View Full Version : Weird situation, part 1 of 2 (sorry, very long post)
Hi all,
I usually lurk in a forum for a while before posting, to get the "lay of the land" and get as much information as I can from archives before asking questions of my own. However, I'm sure you can understand that time is critical for me right now, and so I apologize in advance for any breaches of forum etiquette.
My diagnosis is Stage IIA Seminoma, with three enlarged lymph nodes in the retroperitoneum (RP) on the side of my I/O (left). The largest node is 1.4cm. I have gotten a casual opinion from the urologist who did my surgery and four formal opinions from oncologists, two of whom are professors at Harvard Medical School (HMS) and practice at Dana-Farber in the genitourinary cancer center. The opinions seem to me to be inconsistent, so I'll just lay it out as follows.
The urologist informally said he thought that any lymph node over 1cm in the RP is a cause for concern, but that it would be "borderline" as to whether I could choose surveillance as a treatment. This I later found was not true - every oncologist I've seen said nothing about "borderline".
The first medical oncologist I saw was not a TC expert, and so he consulted with Dr. Glenn Bubley, who is the director of genitourinary medical oncology at Beth Israel Deaconess in Boston and also a professor at HMS. They both agreed that the standard treatment for my situation is a course of radiation over about 20 treatment days. However, they also said that just recently (last 6 months or so) in genitourinary oncology favor has begun to shift away from radiation toward chemo since the risk of second malignancies is thought to be less with chemo. They offered an alternative treatment for me: 3 cycles of EP. After doing much reading on several reputable web sites (TCRC and NCI, among others), I found that as they said, the standard for stage IIA seminoma is RT. For stage IIB it seems that some may be given the choice of RT or chemo, but in this case chemo is either 3xBEP or 4xEP. I haven't seen 3xEP mentioned as an appropriate treatment for any stage or type of TC. Their reasoning is that since my cancer is in early stage II, they would rather spare me the exposure to Bleomycin or to the fourth cycle of cisplatin.
My oncologist wanted me to speak with a radiation oncologist before deciding, so I met with one at the same hospital for a consultation. He informed me that the risk for second malignancies from RT is about 1%. That didn't sound too bad to me compared to the complications that can come with chemo, so I started thinking maybe I'll go with the traditional treatment.
I wanted to get a second opinion, if for no other reason than to set my mind at ease about my decision. I tried to get an appointment with Dr. Kantoff at Dana-Farber, but the earliest available appointment was in about two and a half months. Kantoff is listed on TCRC's experts page as one of four in the Boston area, but one of only two oncologists. I couldn't wait 2.5 months though, so I scheduled appointments with two other doctors in his group - one a radiation oncologist and the other a medical oncologist.
I met with the radiation person first, and she immediately set my mind at ease by telling me she has treated hundreds of seminoma patients with RT over a period of ten years and not one has had a recurrence or second malignancy! Sounds pretty good to me, where do I sign? She also said that sometimes she likes to hold off on treatment for nodes only slightly larger than normal, ideally for three months from the last CT scan but at least two months. At that time, she would order another CT scan and see whether the node had grown, shrunk or remained the same. If it had shrunk she might suggest surveillance as a treatment option. If not, she would go ahead with RT. She justified this by saying
1) sometimes lymph nodes may become inflamed from the I/O surgery,
2) my CT scan was three days after the I/O, so she said it's possible that it could just be inflammation (God knows there were some, ahem, outside parts in the general area that were still inflamed at that point),
3) she has seen this in seminoma patients with as large as 1.2 cm nodes
4) measuring nodes from the CT scan is imprecise enough that the 1.2 cm node in that patient could very well have been the same size as or even larger than my 1.4cm node, and
5) seminoma is slow growing and so waiting a few months is very unlikely to affect the outcome of treatment
After discussing it a bit more, we decided that I would get a CT scan about two months from the previous one, and the results of that would determine the next course of action. She said if she had to pull a number out of the air she would guess my chances for this "going away" by then to be about 50-50. I left her office in pretty good spirits, as you can probably imagine.
Two days later I had what I thought would be my third and final "second opinion", with a medical oncologist in the same group. After carefully reviewing my CT scans with a radiologist, she thought there was no question that I was at stage II, due to the location, number and pattern of lymph nodes involved. It turns out that the radiation oncologist I saw two days earlier had not been able to view the CT scans because of a computer problem, and she was going by the report written by the radiologist (at a smaller, non-cancer-specific hospital) who originally interpreted the CT scan. The second oncologist felt pretty sure than the first oncologist would change her opinion if she had been able to view the results herself, so they planned to meet between themselves that afternoon to go over the CT scans and come to agreement. Later that day I got a call from the first oncologist saying that now that she had a chance to look at the CT scans, she agreed with the other doctor in that there would likely be no benefit in waiting a month. OK, spirits not so good at this point.
(continued in "Weird situation, part 2 of 2")
(continued from "Weird situation, part 1 of 2")
Well, so what did they think of the three cycles of EP for a treatment? Both said no, that ain't gonna work. They said you can have RT as recommended for your case, or you can have 3 cycles of BEP or 4 cycles of EP if you are concerned about second malignancies from the radiation. So I asked can you quantify the risk of a second cancer with the radiation? The radiation oncologist, during our meeting two days earlier, said that the 1% number is outdated and that the latest research results suggests it's closer to an average of 10% over ten years. This could explain the recent shift in thinking about RT versus chemo for early-stage seminoma. The medical oncologist said you can think of the risk this way: it approximately triples your risk for any given cancer. If you have one or more risk factors for a given cancer, you can expect your chances of getting that cancer to be boosted if you get treated with radiation. So I asked, what about the new equipment that results in more precise dosing and limited field of exposure? It doesn't affect the risk (both actually said this), because the risk is only correlated with the total dosage of radiation you receive, and that hasn't changed over the last 30 years or so. Furthermore, I was under the impression that if you get radiation to the abdomen, you are only at increased risk for getting cancer in the radiation window. Not so, both of the oncologists said. The risk is for any cancer anywhere in your body.
What are the ramifications for my situation? My grandfather had prostate cancer and it looks like my father is probably going to get it (PSA levels rising but no diagnosis of cancer at this point). Given that, they suggested my chances of getting prostate cancer are about 1 in 6 before getting radiation. The effect of the radiation would triple that, so I could expect a 1 in 2 chance of getting prostate cancer. Lovely. My dad also had colon cancer.
They also said another thing to think about is how we would treat one of the cancers you are at high risk for (prostate or colon). Both are in the same general area that would be radiated for stage IIA seminoma, and since they place a lifetime limit on how much radiation (both global and local) a person can get, radiation could very well be out of the question depending on the location and stage of the second cancer at the time of diagnosis. OK, how about surgery for the second cancer? The problem is that radiation leaves permanent scarring of the tissue in the radiation window, making it more difficult for a surgeon to make clean cuts in this tissue. So surgery would be possible but the chances for successful surgery would likely be decreased from the effects of the radiation.
Because of this, both the medical oncologist and the radiation oncologist at Dana-Farber/Harvard suggested that I choose chemo, even though radiation is the standard for stage IIA seminoma, and both said I should choose between 3xBEP or 4xEP. The medical oncologist went further to suggest that I would be at risk for fewer serious long-term complications if I chose the 3xBEP, since the fourth cycle of cisplatin in particular has been shown to be associated with a dramatic increase in risk of long-term problems (I'll have to check my notes for the problems she mentioned, can't remember right now). She felt that the bleomycin's primary risk of lung damage would be small for me since I am 36 and have never smoked, but using bleo would be contingent upon the results of a lung function test that Dana-Farber would run on me prior to starting BEP. They apparently don't use bleo unless absolutely necessary on TC patients aged 50 or over, or who have smoked, or who don't do well on the lung function test. The medical oncologist went on to say that she has been treating TC patients for 16 years and that she hasn't seen a single case of bleomycin toxicity in the last ten years at Dana-Farber (ie, not just her patients), and she thinks it is because of this prescreening that they do now.
But everything I've read says bleo is a bad dude to be avoided when possible. I'm very much looking forward to any feedback or comments on my situation.
I would be particularly interested to hear from those who had to choose between 3xBEP and 4xEP - what did you choose and why?
I would also be interested in hearing from folks who had 3xBEP and had any sort of change in lung function afterward.
I would also like to hear if others with stage IIA or IIB seminoma were given the choice of RT or chemo, and what you chose and why.
One final point I'd like to make is in regards to the risk of recurrence in the remaining testicle. The doctors at Dana-Farber estimated that 2 to 4% of patients with TC in one testicle will get it in the other testical later. This is compared to the risk of about 0.4% for the general male population to get TC in the first place. To be quite honest, the prospect of losing the other one terrifies me. In my reading, I came across a study that showed the risk of such recurrence is less with chemo than with radiation, although right now I cannot find the paper and so I don't know the numbers they gave. Does anyone have any thoughts on this? Is there supposed to be a lower or higher risk for this kind of recurrence with seminoma or non-seminoma, and is the risk affected by stage of the original TC?
Thanks to all who managed to read this far. I'm sorry it turned out to be so long (and kind of stuffy). Any input you can give me will be greatly appreciated.
-TSX
Whew!! The only thing I will comment on is the 3xBEP. My son was treated for embryonal carcinoma from 12/13/04 through 1/28/05. The doctor was concerned about the bleomycin. My son smoked. He was given a PFT for a baseline. By the end of his 3rd cycle he had two bleo treatments left. His PFT showed lung impairment. The doctor felt that the risk to his lungs was greater than the risk from cancer reoccurring so he stopped the bleo. When asked if his lungs would recover, we were given a "shrug". He just had a PFT two weeks ago (14 months post chemo) and his lungs are 100% functioning. Absolutely no damage, completely recovered. He has had no lasting effects from the chemo except for the sterility which we are hoping he will also recover. Good luck making your decision and once you do don't second guess yourself. Just go forward. Dianne
Thanks, Dianne, that's encouraging to hear about your son's lungs returning to normal.
Did the doctors say he would never be able to scuba dive or have an oxygen mask put on him because of the bleo?
-TSX
TSX:
Welcome aboard. Great first & second posts. I understand your concern about future cancers, it's a topic that comes up quite often on this forum. All I will say about that right now is first things first. Your research was wonderful but lets get you cured.
With your staging I would go for the RT. As you know chemo is not that effective in combating slow growing cancer and you don't have any spread to the lungs. Don't worry about the RPLND it's a rough operation but your in the company of hundres who got through it without too much trouble.
My son had and still has three lung spots of undetermined origin. When the question of chemo came up I requested the 4EP rather then 3BEP because of our level of physical activity. The doc went with the 4EP to preserve lung function for scuba diving. As I said before I wouldn't worry about the chemo I think your prime for RT.
Thanks for coming out from lurking in the shadows and into the forum! When was the I/O done, what size tumor, was there invasion of the spermatic cord or lymphovascular invasion (by staining and microscopic evaluation?)
My husband had a "few lymph nodes noted to be <1cm" on his left side 3 days post op. His radiation onc and Sheinfeld at Sloan weren't concerned and still called him Stage 1, but he is having a CAT done on his first follow up in May to check the nodes just in case it wasn't an imflammatory response. We were also told that the risk of a secondary malignancy is very slight. Chemo was never mentioned but surveillance was. He schedule the zaps as late in the day as possible and din't miss work. Seminoma is so exquisitely sensitive to RT he went with that and will have chemo to fall back on if heaven forbid we see the beast again!
Lots of information to filter and weigh and lots of conflicting opinions, in the literature and in person... Let us know what you end up deciding.
Welcome TSX,
Very informative posts there.. Sounds like you've done your homework and that you'll make the right decision for yourself. I cant really give you any advise on the chemo or RT since i'm not too familiar with it since I only had the I/O and RPLND.
Sounds like you are taking the right steps to make a decision on a treatment plan. You are in good hands at Dana-Farber also,, thats where I've been treated for over 2 years now =)
I wish you the best and hope all goes well. Keep us updated.
-Kevin
Thanks for your input, Karen.
Thanks for coming out from lurking in the shadows and into the forum! When was the I/O done, what size tumor, was there invasion of the spermatic cord or lymphovascular invasion (by staining and microscopic evaluation?)
The I/O was done on 2/18, the tumor was 3.5 x 2.6 x 2.5 cm. The exact wording of the "Final Diagnosis" in the pathology report is "Left Testis: Pure Seminoma, not present at resection margins. Intratubular germ cell neoplasia, extending into rete testis."
We were also told that the risk of a secondary malignancy is very slight.
That's what the first radiation oncologist told me as well: about 1%.
The radiation oncologist at Dana-Farber said that number is outdated however, and that the latest studies suggest it is closer to 10% in general and higher if there is a family history of any specific cancers. For instance, my risk for prostate cancer would increase to 50% (ie, a 1 in 2 chance) if I get radiation, according to the oncologists at Dana-Farber. I'll explain in a reply to dadmo's post - I'm still trying to find some numbers for a few things.
Thanks,
-TSX
Very informative posts there.. Sounds like you've done your homework and that you'll make the right decision for yourself. I cant really give you any advise on the chemo or RT since i'm not too familiar with it since I only had the I/O and RPLND.
Sounds like you are taking the right steps to make a decision on a treatment plan. You are in good hands at Dana-Farber also,, thats where I've been treated for over 2 years now =)
Thanks, Kevin. I feel like I've learned a lot over the last four weeks (since my I/O), but still not quite enough to make a good decision on this treatment.
Did you have the RPLND at Dana-Farber? If so, who did the surgery? I'm just curious - it's not an option for me since I have seminoma.
-TSX
Hi TSX.
A condition like yours is treated with Radiation Therapy.
I have never heard of a 50% risk of prostate cancer due to RT. Very rarely kidney damage later on, but it's not something to worry about when compared to TC.
3XEP is not in the text books.
3xBEP didn't hurt my lungs (and I even used to smoke).
Stay with the experts, Dana-Farber comes highly recommended.
Best wishes
Jens
I should mention that I got a second opinion on the pathology from Dana-Farber's genitourinary pathologist. He did this from the original slides from the pathology department at the hospital where I had the I/O. His final report was a bit more informative:
-----------------------------
Immunohistochemistry reviewed at BWH demonstrates the following staining profile in tumor cells:
Positive C-Kit
Negative - CD30
Tumor extends into rete testis
No LVI present on the slides received for review.
Tumor is confined within tunica albuginea.
ITGCN is present.
By report, seminoma not present at resection margins.
AJCC Stage (6th edition): T1 Nx Mx
-----------------------------
I don't really know how to interpret this - does it look like there are any red flags in here?
From reading the description of the staging definitions on TCRC's page, I think the "N" component is N2 and the "M" component is M0. The blood markers were normal (AFP=2 and beta HCG<2 is what my report said) so the "S" component would be S0. According to the AJCC groupings on TCRC's page, this combination (any pT/Tx, N2, M0, S0) puts me into stage IIB. I've said above I thought I was stage IIA, but I guess not according to AJCC. The doctors' exact wording for my diagnosis has been "non-bulky stage II seminoma".
From the NCCN Practice Guidelines in Oncology – v.1.2006, the treatment for stage IIB seminoma is listed as "RT (35-40 Gy)". I cannot find the reference at the moment, but I do recall seeing (somewhere else) that stage IIB seminoma usually has the option of chemo or RT.
Can someone define "nonpulmonary visceral metastases" for me? Is this the same as enlarged lymph nodes in the abdomen?
-TSX
A condition like yours is treated with Radiation Therapy.
I have never heard of a 50% risk of prostate cancer due to RT.
Thanks, Jens.
I think it may actually be higher than 50% for me. According to the latest statistics by the American Cancer Society, the risk of prostate cancer for any random male in this country from birth to death (assuming death > 70 years old) is given as 1 in 6.
One oncologist at Dana-Farber explained that using RT increases the risk of getting any given cancer by a factor of 3. If she is right, anyone who gets RT for TC has a 1 in 2 chance of getting prostate cancer at some point. For me it would be higher, since there is a history of prostate cancer in my family.
As far as treatment with RT goes, according to the radiation oncologist at Dana-Farber although there are only three enlarged lymph nodes, their relatively wide spacing would require a radiation window larger than she is comfortable with. She said she would prefer I get chemo and reserve radiation for local treatment of recurrences if that happens. I definitely took notice when she said this, because of the four oncologists I've spoken with, she is the only one that recommended a treatment outside her specialty.
Obviously I've still got some things to work out between my doctors before I can get started on any treatment, but thanks for the comments and feedback, and please - keep it coming.
-TSX
Have you looked through this as far as staging and treatment options?
http://www.nccn.org/professionals/physician_gls/PDF/testicular.pdf
Have you looked through this as far as staging and treatment options?
http://www.nccn.org/professionals/physician_gls/PDF/testicular.pdf
Karen, yes, that is the "NCCN Practice Guidelines in Oncology" that I mentioned above. It is conflicting with what the Dana-Farber doctors are telling me right now.
Thanks,
-TSX
oops, missed that, sorry. It's hard to question Dana Farber but it does seem to go against everything I read. Can you push for another CAT now or in 2 more weeks? It's the difference between IIa and Ia (and less Gy and less daysof RT). My husband's tumor was smaller, and he had rete testes invasion too. This is bugging the heck out of me...I'm going to pull out my pilo-o-papers and review, but I though the risk was a tad less than 2X for all cancers. If they do radiation what field would they zap...dog leg or infradiaphragmatic?
Karen, if your husband's family history is clear with respect to cancer, then I think he made the best choice if that's what is bugging you. Even if the history is not clear, I still am searching for answers about that one. But it sounds like he was not as far along as I am, so there probably wasn't even a question in his case at any rate. You did say all of his lymph nodes were smaller than 1cm, correct? From what my doctors have told me, smaller than 1cm is considered to be completely normal.
Keep in mind these doctors are telling me this (chemo instead of RT for early-stage seminoma) is a recent (about 6 months or so) trend and there is still not agreement among the experts that it is the right thing to do. The basis for the change in thinking seems to be recent studies that show that the risk of secondary malignancies from RT is greater than was previously thought. I'm going to try to find out more next week from the doctors who are telling me this.
I said in my initial post I was IIA but in a later post I said according to the AJCC guidelines I am actually a IIB because there is more than one lymph node enlarged. As you mentioned, this puts me in the higher radiation dosage, and given my family history of cancer that is what is bothering me (and the doctors at Dana-Farber, apparently).
I'll check the reference for the increased risk business. I seem to recall one of the doctors giving me a paper that had broken it down by individual cancers, and it ranged from about 2x to 4x. I'll try to find the citation and post it later.
The doctors at Dana-Farber didn't get into exact RT window shape with me. At the other hospital, they described the window as two rectangles: one from the navel straight down to the pelvic bone, then over to the left (side of primary tumor), up to navel height and then back across to the navel again; and the other rectangle is about 3 to 5 inches wide (can't remember the exact number here) stretching from the navel to the sternum and centered along this path. Which of the options does this sound like to you? If your husband had something different from this, can you describe the area he got radiated?
I am going to try my best to get another CT scan of my abdomen this week. It will be one month since my last one on Wednesday. I'd feel better if I knew more about what is currently going on down there before making this decision, but I don't know if the doctors will indulge me on that.
-TSX
TSX,
What's bugging me are the stats they are citing. They are talking about a dog leg field for you...there's controversy about that too. I guess with you I'm thinking if there was no evidence of LVI, markers went to normal, ane the possibilty exists the enlarged nodes may be from the surgery putting you at T1,M0 and possibly N0 not N2 and Ia not IIb. Can I ask how old you are? (I'm older than dirt...or at least feel that way by Friday :rolleyes: )
I need to proof these posts...I'm really not illterate,just REALLY bad at typing!
AUGHHHH I had a typo in that too....I give up!
Karen, I'm 36, and I feel older than dirt right about now dealing with cancer treatment.
The dog leg field was what the smaller community hospital described - Dana-Farber never got into the specific shape with me because we didn't get very far in exploring RT as an option.
I would be ecstatic to see the nodes smaller than 1cm in the CT scan, and I'm pretty sure I would be a surveilling fool shortly thereafter.
I'll try to find that citation on the stats by tomorrow.
-TSX
I need to proo :D f these posts...I'm really not illterate,just REALLY bad at typing!
You can go back and edit your posts at any time (look for the edit button - it should only show up on your own posts)(unless you are a moderator I suppose). That's what I usually do when I find typos in my own posts, because it bugs me too.
-TSX
Can someone define "nonpulmonary visceral metastases" for me? Is this the same as enlarged lymph nodes in the abdomen?
OK, I think I can answer my own question now, after a bit more digging.
Nonpulmonary visceral metastases means metastasis in internal organs other than the lungs, best I can tell, and does not include the lymph nodes.
This is relevant if you are going by TCRC's staging table titled Patient-risk categories according to type and stage of germ cell tumor (http://tcrc.acor.org/staging.html).
According to this table, I would be considered good risk since I have pure seminoma, no nonpulmonary visceral metastasis and normal markers. This is curious, since the doctors at Dana-Farber have been telling me that I am intermediate risk. One even said I was borderline high risk because of the size of the primary tumor (3.5cm). She said they consider 4cm or larger primary tumors high risk.
-TSX
My son's doctors always seemed to grade his case a bit higher then I thought it was. All I can make of that is that they don't want to under treat the condition. I'm not sure if that's the right approach but they did save my son.
Presence of non-pulmonary visceral metastases (liver, CNS, bone, intestinum) puts a patient with seminoma in the intermediate risk group.
Seminomas are - to the best of my knowledge - never considered "poor prognosis". At a later point, in case of recurrence, it is a different story, but it really means that you are not a candidate for "poor".
And as your spreading is confined to three lymph nodes, you are in the "GOOD" prognosis group. Congratulations.
All the above according to this source (http://annonc.oxfordjournals.org/cgi/content/abstract/15/9/1377).
Best wishes
Jens
What's bugging me are the stats they are citing.
Karen,
I've had a chance to dig through my notes for the paper that Dana-Farber cited. Click on the following to go to the PubMed entry for this paper, which as you can see was just published this month:
Travis et. al., "Second cancers among 40,576 testicular cancer patients: focus on long-term survivors," Urologic Oncology, Mar-Apr 2006, vol. 24, no. 2, pp. 171-172. (http://tinyurl.com/os2ex)
This was a survey study on patients treated in the period 1943-2001 in Europe and North America. There are relative risks given for a number of individual types of cancer, but these numbers are averaged for treatment with RT, CT and RT+CT. The relative risk numbers averaged over all treatments range from 1.5 for lung cancer to 4.0 for stomach cancer. They also mention that the patterns of risk were similar for both seminoma and nonseminoma survivors, but that risks for nonseminoma survivors treated after 1975 were lower. Not coincidentally I believe, this is around the time that the effectiveness of BEP for nonseminoma was discovered and RT was subsequently abandoned for these patients, at least as the primary treatment.
They did give relative risk numbers by treatment, for getting any kind of a second cancer:
RT - 2.0
CT - 1.8
RT+CT - 2.9
If I am interpreting these numbers correctly, perhaps this is where the "triple your risk" comment came from - for combined therapies the risk is 2.9 times the risk for the general population. However, that wouldn't explain why the doctor told me the risk would be triple for RT alone.
Another conclusion from this study is that the risk for TC survivors who are treated with one of the three methods at age 35 have an elevated risk of second cancers for 40 years, then it falls in line with the general population. Over the period of time from age 35 to age 75, the probability of developing "solid cancer" is given as:
1) treated for seminoma: 36%
2) treated for non-seminoma: 31%
3) general population: 23%
If you look at the probability of developing any cancer as a function of age attained starting from age 35 (http://tinyurl.com/qgnv4), the numbers for the general population rise dramatically in the decade from 70 to 80 years of age, so maybe it has more to do with the general population catching up to TC survivors than the other way around. By the way, here is a bombshell that an oncologist (not at Dana-Farber) just dropped on me: all men over the age of 70 have prostate cancer. He said if you biopsy the prostate you would find cancer in every single one. It is such a slow-growing disease however, that the majority of men die of something else before even being diagnosed with prostate cancer.
One thing I think is important to mention here. The DF doctors told me that both RT and CT are carcinogenic and that this has been proven. They suggested that the risks are about the same for RT and CT if you receive four cycles of chemo, but lower for CT if you only receive three cycles.
-TSX
TSX,
Thanks for the reference and excellent summary, which I'm sure will interest many. Just went through my pile of stuff and found an almost identicle paper published by the same group on the same cohort. J. Clin Onc 22:640-647 (2004), which I notice you also pulled up on your PubMed search. The 2X number was what I remembered. The radiation oncologist told us it is also speculated that men with tc may have a genetic disposition for other cancers. Treatment modality is definately a personal decision and you certianly are armed with the information needed. I still hold onto hope that with all the follow-up everyone has, if a secondary does occur it will be detected early and be more treatable.
Good luck and let us know what you end up chosing!! And whatever you do, don't look back!!
Well, my husband was diagnosed with bladder cancer 15 years after TC. He didn't have RT or CT, just RPLND. He was diagnosed early because he sought medical attention immediately and even though his doctor thought it was an infection because of his history more tests were immediately taken and he was in surgery within the week. The cancer was "superficial" because it was caught early. He had a reoccurrence, but again it was caught early because he was being checked every three months. He has been five years clear even though they thought he had a reoccurence the same week (11/2004) that my son was diagnosed with TC. I had them both in the hospital having surgery within 3 days. Thank goodness the tumors were benign. If they were malignant, he would have had chemo. I guess he and my son could have shared the same room while I was in the mental hospital. One interesting point, he continued to have an "inflamed" bladder until his last test. His bladder was perfect. Guess what, he had gone from drinking 4 cups of coffee a day to two cups of decaffeinated a day. We really believe the coffee was the culprit. Not giving him cancer but inflaming his bladder making a nice home for the cancer to form. The moral to the story is that you have to remain vigilant. Dianne
Karen,
I did see that other paper, although I think it was from 2005. One was probably from a conference and the other submitted formally to a journal. Usually the conference paper comes first since it is easier to prepare and gets the results disseminated fairly quickly, then the journal paper comes later after going through the formal peer-review process which can take quite a bit of time. In academic circles it would be shady practice to publish the identical paper in two different journals.
Regarding my decision on treatment, right now I am leaning toward what the DF people are recommending: 3xBEP.
There are several reasons for this:
1) As I mentioned, three cycles of chemo has a lower risk of second malignancies than a course of radiation, and the radiation they are talking about for me would be on the high side (30-35 Gy).
2) I mentioned earlier that I was concerned about recurrence in the contralateral testis. I have a paper that states the probability of this happening is 5% with RT and 1-3% with chemo.
On a related note, another paper I read was a case description on a pediatrician in Europe who was diagnosed with a contralateral recurrence at age 29, three years after the first diagnosis. The doctors suggested a second orchiectomy, and he refused since he wanted to father children and he was concerned about the effects of HRT and probably the whole loss of masculinity fear. At any rate, he asked that they do chemo without the orchiectomy and that he would take his chances. After chemo there were no signs of the tumor remaining in the testis, and two years later (when the paper was written) he was still disease free and his fertility numbers were recovering. The subject of the paper was the idea that chemo could eradicate TC in situ and save the remaining testis in cases of contralateral recurrence. This was not a study, obviously, just the experience of one patient, and I think it was given to foster discussion of possible new research in this area.
3) Almost all recurrences of seminoma happen outside the radiation window. My enlarged nodes are relatively spread out. These are the ones that can be seen on a CAT scan, but there are likely other nodes that have malignant cells, and I don't want to take the chance that the radiation window would miss them and I'd have to get chemo later anyway. Supposedly one of the more common recurrent sites is the left supraclavicular lymph node (just above the left collarbone on base of neck), and I've been told this is a common area for seminoma to move after development in the retroperitoneum as a natural progression. Well, I have a lump in this area, small (maybe 5-8mm) but bigger than I remember it being in the past. I've asked every oncologist I've seen about this lump, and they either say they can't feel anything (they are pushing too hard - it's soft and requires a light touch to feel) or they say it's nothing, just a normal lymph node or a node on a blood vessel. In the early days of seminoma treatment the supraclavicular area was radiated as well, but it's no longer done. I will feel better knowing that if it's not "nothing", the chemo will in all likelihood take care of it.
So that's where I stand right now. I will not know if I am eligible for the 3xBEP until I do a lung function test at Dana-Farber later this week. If I do poorly on the test I will have to reevaluate, since the choices would then be RT or 4xEP.
I've also seen an interesting paper on the use of smaller-window, low-dosage RT combined with single-agent Carboplatin that shows better 5-year relapse-free rates than higher-dosage RT alone for seminoma stage IIA/IIB patients. I'm going to try to find more on this and possibly discuss it with the doctors at Dana-Farber, particularly if I fail the lung test and would not be able to get Bleomycin.
-TSX
huckchef
03-21-06, 11:30 AM
i wasnt giving an option. i was told that it was pretty good % that recurrence wouldnt happen(96-98%?). i recently spoke with my rad onco and he reassured me that it would be highly unlikely for something to come back into the filed that was radiated (i was having some pains in the area and had a ct scan done to ease my mind and all was clear). as far as other areas i believe i would just have to deal with that situation if it was to ever arise. i dont think i would have done the chemo based what you are stating. just my thoughts! best of luck and my thoughts and prayers are with you daily!
brian
With a potentially suspicious supraclavicular node chemo definately sounds like it might be the best route...assuming the node is involved. :confused:
PS. You're right, the paper (12 pages with 73 references, definatley not a meeting abstract) was from '05 and not '04, citation below. Yup, double dipping is a shady practice, but it is done (although never by me :cool: ).
J Natl Cancer Inst. 2005 Sep 21;97(18):1354-65.
Second cancers among 40,576 testicular cancer patients: focus on long-term survivors. Travis LB, Fossa SD, Schonfeld SJ, McMaster ML, Lynch CF, Storm H, Hall P, Holowaty E, Andersen A, Pukkala E, Andersson M, Kaijser M, Gospodarowicz M, Joensuu T, Cohen RJ, Boice JD Jr, Dores GM, Gilbert ES.
The paper I cited was Mortality After Cure of Testicular Seminoma, a study of 477 men with stage I or II treated at MD Anderson.
J Clin Onc. 2004 Feb 15;22(4): 640-647. (gotta go back to using citation manager!)
Brian,
Thanks for the well wishes.
One thing I am learning from this experience is that doctors like to give lots of percentages but often don't like to say where their numbers come from. I didn't start questioning them until I started to get significantly different numbers from different doctors.
I have heard similar numbers to what you are saying for IIA seminoma, and I have also heard lower. More often than not what I have read is "a success rate of >90%" for using radiation on stage II seminoma, which I assume includes both bulky and non-bulky. I have also heard that there is only a 1% chance of developing a second cancer from the radiation, but then the doctors at Dana-Farber said that was thought to be true until recently, when it was discovered that it is closer to 10% on average. When I told the DF doctors that another radiation oncologist said that the chance was 1%, they replied that "he has not kept up with his reading." It's still pretty good odds, I think.
Similar to what you've been told, I was told (and also later read) that the chance for a recurrence in the radiation window is nearly negligible, and that recurrences in patients given radiation are almost always at the border of the radiation window or just outside this area.
Frankly, I don't like any of my options at this point. A large part of my motivation for posting this thread and the follow-ups is to try to organize and work through my thoughts so that I can come to a decision that makes sense to me. According to the AJCC guidelines, I am at stage IIB. Also according to the AJCC guidelines, I should be getting radiation. According to the European guidelines, I am at stage IIA, but they also say I should be getting radiation. The people at Dana-Farber are on the front lines and will see any trends before they get incorporated into the formal guidelines, and what they are telling me now is that they recommend chemo as my best long-term option.
I am really interested in finding out more about this combination low dosage radiation with single-agent Carboplatin. It may be a good compromise that would allay my fears of a recurrence in the contralateral testis or in the supraclavicular lymph nodes, while eradicating what can be seen on a CT scan now. Carboplatin is supposed to be far less toxic than Cisplatin but similarly effective as a single agent, but if I have my story straight it is not as effective as Cisplatin when used in combination with Bleomycin and Etoposide.
Cheers,
-TSX
I think the one thing to keep in mind is that though many others have been diagnosed with the same cancer and stage as you, every person's case is unique in it's own way given tumor make-up, markers, age, other health factor and risks, life style and the list goes on and on.. Doctors are getting away from the days of standard protocol and really looking closely at each case and prescibing treatment on a case by case basis.. The Dr. at Dana Farber more than likely having recommended this treatment option for YOU based on YOUR particular situtaion and not based on standard protocol.. At stage IIIC with afp at almost 50,000 and elevated LDH, an 8.5 lb tumor, spread to the lymph nodes liver, and lung --if the doctors followed standard protocol for My situation I would be dead--At some piont you have to start putting your trust in what these Doctors are telling you and get your treatment started. Being educated and reading all this info that you are right now is great but there does come a time when all this info can start to confuse you.. Perhaps you should catch a flight to Sloan or Indiana for a second opinion and then if they agree, get started....Best of luck with whatever treatment option you decide on!!!!! DON :)
PS : Go Red Sox and Patriots!!!!!!
Thanks, Don. Nice avatar, by the way.
When I saw your abdominal tumor size listed as 34cm (~13.4 inches) I thought that must be a typo, but if it was 8.5 pounds then I guess not. I cannot even begin to imagine what that felt like.
The peripheral neuropathy is something I am worried about, and I am sorry to read that it is something you are dealing with. How bad is it for you? In other words, what does it feel like and is there anything you can take to alleviate the symptoms? When did you first notice it, and is this something you'll have to live with permanently or does it gradually decrease over time?
Regarding the second opinion, Dana-Farber is my second opinion. The first was at a smaller community hospital (which is still a teaching hospital for Harvard Medical School and so is still very good), where my oncologist consulted with the director of genitourinary oncology at Beth-Israel Deaconness Hospital (here in Boston) to offer treatment of chemo or radiation. So the breakdown is five oncologists consulted so far at three hospitals in Boston: two recommended chemo over radiation, two said I could choose between RT and CT but "off the record" said they would probably choose chemo if it were them and one (a rad. onc.) recommended radiation. Tonight I was joking around with my wife saying we should get all five of them together and have a cage match, WWF style, and the last one standing gets to say what treatment I'll get!
Cheers,
-TSX
Edit: If you are a Pats fan you probably know we lost David Givens and Willie McGinest to free agency, and we stand a pretty good chance of losing Adam Vinatieri. McGinest and Vinatieri leaving New England is a real shame - I'd prefer they both be allowed to finish out their careers here. Still, it's hard to question the Patriots' personnel decisions with all of their recent success, but you have to wonder if this is the straw that will break the camel's back.
I think they call that the "hell in the cell" match.. Neuropathy is a bummer... I found out later that precautions could have been taken while having chemo(IV medication and creams(?)).. I,m taking Lyrica for the pain and I have Oxy codone for the really bad days( I try not to take it if at all possible)..I first noticed the neuropathy after the first round of salvage chemo.. Ithink the fact of the 6 rounds of chemo and being bed ridden for almost 3 months caused the neuropthy(my opinion).. You would have much less of a chance of getting neuropthy with Carboplatin.. I can see your piont with the different opinions--its makes you feel like flipping a coin and going with the results!!!!! Neuropathy can decrease over the course of time---Mine has actually gotten a little worse--Guess I'm just luck... I remain optomistic that it will go wake up every day to see my wife and kids--- that's really all that counts..I think that the chance of eliminating all the cancer and not having a reoccurrence is better with Chemo than Radiation- which treatment are you leaning towards?????
I'm leaning towards the chemo, Don. Basically for the reason you mention, and I'm concerned about this lymph node I can feel on my neck by my collarbone, even though the doctors seem to think it's nothing to worry about. I should also mention there were three tiny spots on my lungs (about 4mm to 6mm), but all five oncologists I've seen said they didn't think they were cancer but a byproduct of a past illness of histioplasmosis. This is a lung infection caused by airborne spores released by bacteria in bat or bird droppings (!) as far as I can tell, and it affects 80% of the population in the Ohio River Valley and often goes undetected since it is so mild. Even though I've never been to the Ohio River Valley (the doctors were keen to find out if I had), I did live in Austin, Texas for five years, and there is a large Mexican freetail bat colony there (about 1.2 million when I was there). There were a couple of spots next to a trail near downtown where you can see/smell the bat droppings (under the Congress Avenue Bridge), and I used to run on that trail.
What's this about the precautions against neuropathy? Can you point me in the direction of some more detailed information on this?
Thanks,
-TSX
My son had and still has several small lung spots. Since they were unaffected by chemo the doctors at Sloan decided that it was residual thymus. They told us that in general about 10% of the population has meaningless lung spots.
We decided to go with 3xBEP. Started yesterday, ending on May 19th. No adverse reactions after two treatments, one of which included the bleomycin, so it's very early but so far so good. My pre-chemo PFT numbers (tested yesterday morning) ranged from 110-135% of the average for my demographic, so I've got some margin there if things go bad with the bleo. They are going to check this before each weekly dose of bleo throughout the nine-week treatment.
I spoke with the Dana-Farber radiation oncologist who was the only person recommending a treatment type outside her specialty. Her concern after looking at my CT scan is that, although there are only three lymph nodes enlarged, they are all along the same chain and spread apart such that the relatively large radiation window would include the base of the lungs. She said that if we radiate the lungs now, this may preclude the use of Bleomycin in salvage chemo if necessary. (Aside: Can't they come up with a less morbid name than "salvage chemo"? I mean, really now.) Plus there is the whole business of tripling the risk of second cancers to be concerned about, particularly with the high doses I would receive as a stage II case. Although I'm still a bit nervous about the possibility of lasting side effects, I feel more comfortable with three cycles of BEP than anything else at this time, outside of waking up and finding this is all a bad nightmare.
I understand that this treatment is not what the cookbook says I should do (hence the title of this thread). Keep in mind that I went to Dana-Farber precisely because I will not get cookbook treatment there. So far I've been nothing but pleased with everyone there from receptionists and technicians to nurses and doctors.
Thank you all very much for your input, thoughts and best wishes, and I'll see you on the other side.
Cheers,
-TSX
TSX,
Glad you're doing OK so far with the BEP, you're in great hands at DF. Best wishes for an uneventful treatment course and beating this once and for all! Keep us posted!
Sounds like the right choice, TSX.
Hi TSX.
3xBEP has cured an enormous amount of men during the past 30+ years. Glad you are joining us.
Hang in there, BEP wasen't bad for me. Mostly fatigue, practiaclly no nausea and no bleo-reaction.
So just have them pour away, it's all for the better.
Best wishes
Jens
P.S. As Scott wrote the other day, 2. line is a much more appropriate term than salvage.
TSX
I don't want to sound like your mom here but make sure you take your anti-nausea medication, and get ready for your hair to come out. The chemo may be constipating so be set with something to take care of that. Good luck.
TSX
I don't want to sound like your mom here but make sure you take your anti-nausea medication, and get ready for your hair to come out. The chemo may be constipating so be set with something to take care of that. Good luck.
Thanks, Dadmo.
I'm already having a bit of nausea - no throwing up, but a general queasiness in the evening after I've gotten the day's infusion. Today my nurse recommended sublingual use of Ativan for quick relief of nausea - we'll see, I'm trying that today. I also have Compazine for anti-nausea, but another nurse said I should wait until the end of this 5-day infusion period to start trying that. I knew it was probably going to be bad when on the morning of the first infusion I got prescriptions for three different anti-nausea drugs. Yikes!
One of the nurses explained that the Zofran anti-nausea medication was the usual culprit in causing constipation, and a 24-hour dose of this is given just before each chemo session over the 5-day EP stretch. She recommended Colace if no relief after one day, then Colace + Senekot if no relief after two days, then let someone at the hospital know if there is still a problem. Personally I don't mind the taste of prune juice (as long as it is high quality) and so I have started to drink a glass of that in the morning and evening instead of my usual orange juice.
Previously I've used Metamucil for similar "situations", but one of the nurses said Metamucil, while normally no big deal, might make one very nauseous if taken while on chemo. Enough said, I don't want to test her theory personally.
For some reason, the prospect of losing my hair doesn't bother me one bit. Maybe it's because my wife is a Star Trek fan and digs Jean-Luc Picard? If I were younger and still single it would almost certainly bother me, but that is probably the last thing on my list of worries now.
Take care,
-TSX
As a follow-up to my previous post I can now report that sublingual Ativan is doing a great job at anti-nausea so far. Seems to be required once every four hours. This drug is apparently well-tolerated by many, and it is used also for anti-anxiety and anti-insomnia.
Incidentally, in the three treatment days since I've started there has always been (in the same treatment room) at least one other TC patient with chemo going at the same time. Today (Sunday) there were three of us.
Cheers,
-TSX
It sounds like your as ready as can be. Goodluck with the treatments. Don't be surprised if you start to get jumpy, my son and a few other have had that problem. Midnight walks become common. Heated prune juce kicks butt :) .
Incidentally, in the three treatment days since I've started there has always been (in the same treatment room) at least one other TC patient with chemo going at the same time. Today (Sunday) there were three of us.A friend of mine who had chemotherapy would call your fellow patients "Chemosabe."
A friend of mine who had chemotherapy would call your fellow patients "Chemosabe."
Now, THAT is too funny!
-TSX
huckchef
03-28-06, 07:59 AM
glad to hear things are going smooth for you. i hope it continues!!!! many thoughts and prayers for you. keep up the positive attitude!! chemosabe........good one!! :p
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