Diagnosis? no path report yet

[veryworriedmom]

Today the staples came out, no path report yet,doctor called and got an oral report said seminoma stage 1. said the path report was sent out and it will be another day or two. said CT scan next and recommended seeing a radiation oncologist.
I have been reading that some with the same diagnosis choose surveillance and some radiation. What sways people in each direction? Does age have anything to do with it? Its a few weeks off work from what I read and side effects. Can anyone tell me when they received this diagnosis what factors did they use to make the decision. Should there be a second opinion from another radiation oncologist? Do people get second opinions on Path reports? We are still in the initial shock stages, only one week since diagnosis and surgery on 8/29/07. I appreciate all the feedback and support. VWM

[Already Bald]

Do people get second opinions on Path reports?

VWM,
People often get second opinions on Path reports, in fact I had my slides read three times.
The second and third read were at PENN and Sloan-Kettering, both centers of excellence.

I recommend that you see one of these experts:
http://tcrc.acor.org/experts.html

As far as making decisions on treatments, that is and always be a tough one.
Me?, I think that you should do whatever you can to avoid the possibility of future chemo.
But based on that oral path report, you son is likely already cured
Why not go see an expert, and learn as much as you can about your options?
Remember, having to make decisions is a good thing- it means that the doctors are not sure if he is cured. If they were unsure, you would be going straight to RT or chemo!
Hope this helps,
Joe

[dadmo]

VWM
I would certainly get a second opinion a diagnosis of seminoma in a 23 year old is unusual, not bad, just unusual. The more common form of testicular cancer for that age group would be non-seminoma. The reason for a second opinion is that they are treated differently. Non-seminoma gets chemo and seminoma gets radiation and you don't want the treatment to be wrong. I don't know where you live but my wife and I are 35min fromn Sloan Kettering in NY. If you should decide to visit them you can stay with us, we have plenty of room.

[Fed]

Hi VWM,

First off, just to put my mind at ease, I would get a hard copy of the pathology report. A diagnosis of seminoma is quite promising. Like dadmo said, it doesn't happen very often in younger guys, but it does occur: a couple of our more active members, fuse929 and Matt24, are 23 and 24, respectively, and both also had seminoma stage I. Fuse929 went the surveillance route, while Matt24 did RT.

I myself was diagnosed with stage I seminoma, and I originally wanted to get adjuvant radiation to enhance my 5-year cure rate from 80% to >98%; however, multiple docs (5 of them, in fact) said that, in my case, radiation would probably be overkill because a) there was no lymphovascular invasion, b) there was no rete testis invasion, and c) the viable tumor was tiny (< 1 cm). Also, radiation increases the long term risk (10-20 years) of a secondary malignancy. My surveillance schedule involves abdominal/pelvic CT scans, chest X-rays and tumor markers every 4 months for the next 3 years. Apart from the anxiety leading on the days before labs (less intense as time goes by), it's worked out well for me.

Bottom line, I think you should get a copy of the path report, because you need to know more details before making a treatment call. If you are interested in getting a second opinion on the path read, I would strongly suggest Victor Reuter at Sloan-Kettering. He is the pathologist Joel Sheinfeld (one of the gurus of TC treatment) uses, and he is top notch and very personable -he did my second opinion. In some cases, your insurance will cover a second opinion, and if not, it usually goes for $200-300 (in my opinion a small price to pay for the certainty of a diagnosis and a sure fire guide to adequate treatment).

Feel free to post any other questions you may have. How's your son's recovery going?

[Karen]

vwm,
Joe, Bill and Fed gave you very sound advice. My husband, at age 46, was diagnosed with stage 1 seminoma which, at his age made sense. We still sent the labs, scans and slides to Sloan for confirmation. Our insurance didn't cover it, but peace of mind is worth it. Confirm the pathology, and I don't believe a second opinion from a radiologist will be any different.

Ray chose RT for seminoma and for him that was the right choice. The increased chance of recurrance and the stress of frequent follow ups was not what he wanted to deal with. RT or surveillance are both options and it really comes down to a personal choice. The size of the tumor and invasion may guide you as well on this.

I know your head is spinning, but moving fast from a suspicious lump to surgery is a VERY good thing.

[Fish]

Hi VWM:

I chose survellence for basically the same reason Fed did. My chances of recurrence were low, as there was no lymphovascular or rete invasion, small tumor - 0.7cm. Plus at age 42, this was a positive factor also. I figured if I'd save the radiation in case of recurrence, since seminoma follows a predictable spreading pathway, it's pretty easy to detect early.

I agree with Dadmo, because pure semimona is less common in younger men, having the slides read by an expert would be a good idea.

best wishes.

[fuse929]

I am 23, and I chose surveillance due to the fact that I was diagnosed stage 1a seminoma, had no initial markers, had a clean CT scan 2 weeks post op, and live only 2 blocks from the hospital (making it easy to keep up with my surveillance protocol). My urologist told me he would have done the same if he was in my shoes. I get anxious around the time of my surveillance check-ups, but I can handle it. I hope this helps.

Also, I did not get a second opinion done. I would have liked to have, but my insurance didn't cover it and honestly I just wanted that part of the procedure to be behind me......I think in a way I didn't want the promising news crushed by a different, more dangerous pathology. In retrospect, I should have gotten a second diagnosis, though it hasn't come back to bite me yet.
Bobby

[veryworriedmom]

Thankyou everyone for your advice. The report reads: Seminoma, tumor size 4x2.6x2.4 cm .spermatic cord negative. Stage pT1 NxMx. All of the seminoma confined within the testicle. The urologist had us set up a CT scan for tomorrow if the insurance authorizes. They are a pain and would not rush the request. After the CT scan he suggested we follow up with a radiation oncologist. Now Im concerned if this is an unusual diagnosis for a younger guy. Fed mentioned the second opinion. How do I go about it? do I request the info sent to sloan or do they do the paperwork once I authorize it. I have heard of Dr. Sheinfeld and Im all for the second opinion I just dont know who to start with and if the pathologist has to send the slides out?
The surgical recovery is going Ok just a little sore but yesterday after the docs visit he was very depressed, realized how this is a life changeing event.
To DadMo thanks for the offer. We are in Maryland and I havent thought that far ahead about where to stay. I guess if its a one day consult then we go back the same day. I really appreciate all the help . VWM

[Karen]

VWM,
Call Sheinfeld's office and they will tell you what to send and how. In our case, we FAXed all the labs and reports, the hospital that Ray had the surgery done at sent the slides and we brought the films with us. Sloan will guide you. I strongly encourage a second opinion on the path...even a small % of non-seminoma and the tumor will be treated as a non-seminoma. You may want to meet with Sheinfeld and his team and discuss the options. The tumor is relatively large. The CT and chest X-ray will determie the staging.

Your son may want to post here as well. The emotional toll as this sets in is tough. Yes, life has changed. Life is always changing. He WILL be fine, and we WILL be here for you and your family. Early stage seminoma has a very high cure rate.

I also suggest that you keep copies of all reports, labs and a CD of the scans as well in case your son moves out of the area or changes centers.

Hugs form one mom to another,
Karen

[Fed]

Thanks for the update. For the complete picture, you will need the results of the abdominal/pelvic CT scan to see if there is node involvement. This is also critical in determining the treatment options. Due to the size of the tumor, it is very unlikely that surveillance will be an option. If there is lymph node involvement as noted by the CT, possible options include radiation or chemo. I won't get into these until you find out the results from the CT. Did they specify how far the tumor stretched out? I'm looking for something more specific than "confined within the testicle" (i.e. tunica albuginea, tunica vaginalis, rete testis, etc.).

In order to get a second read on the pathology, here's what I did:

1. Called my insurance to make sure that pathology second opinions were covered. If so, does the new pathologist (Victor Reuter at Memorial Sloan-Kettering Cancer Center) I would be using take that insurance?
2. Called Victor Reuter's office (212-639-8225) to speak with his admin and get instructions on having the second read done. If I remember correctly, I had to retrieve the slides themselves and ship them to Sloan by FedEx along with a copy of the original pathology report, a copy of my insurance card and a cover letter to Dr. Reuter detailing what I wanted examined and what questions I had. I also sent a CD with my diagnostic ultrasound and the corresponding report.
3. Once the slides are received at Sloan, it would take a few days to get the second read. Dr. Reuter himself called me to give me his assessment, and he followed it up with a written write-up. After this happens, make sure they send the slides back to you.

You need not be concerned about this being an unusual diagnosis for a young guy. It is uncommon for a young guy to present with pure seminoma, but it does happen, so you shouldn't think this is too out of the ordinary and in no means should this stress you out.

If you want to discuss this further and offline, feel free to PM me or contact me by e-mail.

[Fed]

The focus on the medical aspects of this distracted me from an important issue Karen brought up. How is your son holding up? You mentioned he seemed a bit depressed, and that is not surprising. Cancer usually tends to strike either older people or very young kids, but with something like testicular cancer, it's guys in their late teens, 20s, 30s, and sometimes 40s that usually go through this. The physical issues with cancer and its treatment are one thing, but cancer also tends to mess with the heads of the patient and, as you can probably tell by now, the caregivers. You should rest assured that with prompt and well informed treatment, your son has an excellent chance of being cured. Like Karen said, I would encourage him to come over to the site and check it out (even if he just lurks on the sidelines). Even though we are not medical experts, everyone here has been exposed to TC in some manner, shape or form, and we are all here to help each other out.

[dadmo]

VWM:
Pure seminoma doesn't change your son's potential cure, my intent was simply to make sure the diagnosis was correct before treatment began. I'm sorry if what I wrote caused you any extra stress.

As far as staying at our home we don't need any more notice then to knock on the door. We're here for you if you need us.

Bill & Nancy Moses
48 Myrtle Ave
Midland Park NJ 07432
201-445-2532

[Karen]

VWM,
You're new to this Family....but be assured that Bill's offer is genuine. We all have each others backs here and you should lean on us now...and soon you too will be helping others. Please poke around our research library for the most up to date info on seminoma and treatment. The NCCN guidelines can be found here: http://www.tc-cancer.com/forum/showthread.php?t=4589 ,

I agree with Fed that with the size of the tumor, even if the CT is negative, the chance of micrometastesis is such that surveillance may not be the best choice. My husband did have RT, scheduled it at the end of the day, and did not miss a minute of work. A host of medications can control nausea. We can give tips when you are set on the treatment.

[Fish]

Hi VWM:

I see you're in Maryland. I live in Columbia, MD, if there is anything I can do to help out on this end - if you or your son want to get together and talk, we can set something up, please let me know. I'll send you my cell phone # in a PM.

Stay positive, as the others have said, your son has an excellent chance for a cure.

Best wishes,
Jim

[veryworriedmom]

To dadmo ,you did not cause me any extra stress, please don't think that. In fact you did me a favor because I realize we can never be too complacent about this and must cover all our bases to make sure treatment is correct. I just didn't think of a second opinion on path.
To respond to Feds question on the tumor report reads"the tumor does not invade the tunica albuginea" 'the tumor does not invade the tunica vaginalis" No satellite lesions are identified. Tumor is well demarcated from the surrounding tissue"
I will certainly contact Reuters office for second opinion. The Ct scan is being done this morning. I was on the phone for hours yelling at insurance for not approving doctors rush request. I finally reached the state of california hotline and they contacted Aetna . this morning they called with approval on the ctscan. It unbelievable what stress the insurance company's add to this process.Karen's mention that surveillance may not be the best choice is probably why we got a referral to radiation oncologist.
I want my son to join this forum but I don't think he is ready yet. Im sure you all know the emotional toll this takes when the diagnosis is new. Again I cant thank you enough for your advice and support. VWM

[Karen]

Understood that he's not ready yet...and may want to put this behind him so quickly he may never even lurk on this site. Please post the CT results when you get them.


Fish....what a beautiful wedding photo!!!!!
Sis

[Fed]

To respond to Feds question on the tumor report reads"the tumor does not invade the tunica albuginea" 'the tumor does not invade the tunica vaginalis" No satellite lesions are identified. Tumor is well demarcated from the surrounding tissue"

Thanks for the clarification. This is actually good, because this stages him at pT1 despite the large size of the tumor. The only piece of the puzzle is the CT scan. I'll be keeping an eye out for any post from you.

[mstlyn]

To dadmo ,you did not cause me any extra stress, please don't think that. In fact you did me a favor because I realize we can never be too complacent about this and must cover all our bases to make sure treatment is correct. I just didn't think of a second opinion on path.
To respond to Feds question on the tumor report reads"the tumor does not invade the tunica albuginea" 'the tumor does not invade the tunica vaginalis" No satellite lesions are identified. Tumor is well demarcated from the surrounding tissue"
I will certainly contact Reuters office for second opinion. The Ct scan is being done this morning. I was on the phone for hours yelling at insurance for not approving doctors rush request. I finally reached the state of california hotline and they contacted Aetna . this morning they called with approval on the ctscan. It unbelievable what stress the insurance company's add to this process.Karen's mention that surveillance may not be the best choice is probably why we got a referral to radiation oncologist.
I want my son to join this forum but I don't think he is ready yet. Im sure you all know the emotional toll this takes when the diagnosis is new. Again I cant thank you enough for your advice and support. VWM

Insurance companies are a pain in the neck. I remember waiting for approval for an anti nausea med for Anthony while he was going through chemo. He had the first prescription ok'd fine, but when it came time to refill it, it took them a week to approve it, and it was denied a few times before they finally ok'd it. I don't know how they can place restrictions on cancer care. Its nauseating, and it causes more stress for the people that are already dealing with so much.

As for this forum, sometimes Anthony will sit and read certain posts, but when I try to get him to join in, he always says- maybe later. I stopped trying to get him on here months ago. Anthony is a quiet, thinker, type of guy.. I think thats all it is in his case.
I thought it would be good for him to get on here and communicate, let his thoughts out etc .. but Ive been on here for probably 9 months now and he still hasn't posted. I don't bring it up to him anymore.

I hope to see good scan results- will check back in a few days on that.

my best-
Tammy

[Scott]

As for this forum, sometimes Anthony will sit and read certain posts, but when I try to get him to join in, he always says- maybe later.

Hi, Anthony! ::waving::

[Russell's Mom]

Hi to Anthony too! Russell has a different slant on all of this also. He is interested, talks and shares with me, but uses his energy elsewhere. I sometimes wish he would use this forum, then again, I find that I learn a lot from "his" travels. Altogether, it is one amazing group!! Sharon

[Scott]

VWM, I assume you'll be hearing about the CT scan results in the next few days. How are you all doing?

[veryworriedmom]

scott, thanks for asking. He is doing OK I guess, a bit better as he seems to be taking an active interest in getting second opinions whereas last week he was quiet and didn't want to discuss or read much. He went back to work yesterday for a few days. Unfortunately his job involves travel, lifting suitcase into overhead so soon after surgery concerns me. I think work is good for his head.
The difficult part of the process is second opinions etc. Our urologist said we can get a second path report but he assures us in his opinion it was correct. Even though members of this site said pure seminoma was unusual in a 23 year old and that was confirmed by a respected expert. So today we requested a second path reading locally and in addition will send all paperwork to sloan to see if we can get a consult there.
I am glad Im able to navigate the process but I see how frustratiing it is for patients and the family's to have to deal with all this red tape after getting this diagnosis.
The Dr. didnt seem concerned with the CT results but I was and he said "we will keep an eye on it"??? Thanks for the continued support. VWM

[Fish]

The Dr. didnt seem concerned with the CT results but I was and he said "we will keep an eye on it"???

Hi VWM:

That's not a very good answer to your concern. Is there something to keep an eye on? Whatever the results are, you deserve to know. The doctor should not try to be coy about test results. Do you have a copy of the CT scan results. If not you should get one, and of all relevant test results. You have a legal right to have copies of this information, and it will also be helpful if you go to a consult with another doctor. You'll have all the info with you, in case the docs forget to transfer files.

[fuse929]

I agree with Fish that the doctor doesn't seem to have done enough to ease your worry. My urologist sat down with me and went over the entire CT scan "video": chest, abdomen and groin. He explained to me everything on the films, and showed me the high priority areas to check for cancer (lymph nodes, lungs, etc). I would ask to at least sit down with the doctor and have them quickly show you the slides or go over the radiology report.

No matter what you are told, no one cares more about your particular case than you and your son......from my experience, being proactive and demanding information (politely) works.

Bobby

[Fed]

Hey VWM,
Two things come to mind. First, your son should do NO HEAVY LIFTING!!! If it weighs more than a gallon of milk, he should not lift it. Period. The last thing he needs is to go back under the knife for a hernia.
As far as the second opinion on the pathology, make sure that is done by someone experienced. TC is very rare, and the average pathologist only gets to see, on average, 5-10 cases a year (I got this stat when I went to the pathobiology workshop). I will also reiterate what I have said before: seminoma in a young guy is unusual, but it can and does happen.

[dadmo]

VMI:
I don't know if you follow the posts by dannysbrother but Danny's origional doctor said he would stake his carrer on his problem not being testicular cancer.
Push for that second opinion. The surest way to a cure is to start out with the correct treatment.

[veryworriedmom]

Thanks everyone, its very reassuring to have the input. I actually picked up the CT scan and the report was in it(oops) the doc hadn't even read it. Apparently the report usually doesn't go in with the film. He did read it online and didn't seem concerned as the enlarged node was neck area and he said the pathway it travels is through the abdomen. we have an appointment monday for the post op check and he will look at the film with us and hopefully explain. So I have the report, and they sent me all the markers which are normal. Hopefully he will spend time with us on monday. I called Sloan and they said I need to fax in all the reports and they will review and have someone call us. Apparently Dr. Sheinfeld sees people who need to have surgery which is not where we are right now. We are having the pathology slides sent to the armed forces pathology lab, in DC. Several people said it was an excellent facility and they see many cases especially doing all the path reports for the military.Hopefully it will be back end of next week.We can always do a third one.
A family friend physician suggested we see an oncologist to consult with and who could direct us. He said this person will navigate the process for us and also consult with experts usually in Indiana or New York and guide us. We hopefully will do this before we meet the radiation oncologist. I guess my big concern was when a well respected expert said pure seminoma is rare at that age and the urologist disagreed. So who sees more TC? I think we are on the right track. I even ordered the binder from the Lance Armstrong Foundation that helps us keep an organized log of all the paperwork, medical journal treatments and reports. It looks like a wonderful tool since its evident this needs to be tracked for a long time.You guys are great!!!

[dadmo]

VWM:
It would be wonderful if you had a local oncologist who is willing to consult with a center of excellence. That's what our guy did and it worked like a charm. Dr. Motzer (Oncologist) at Sloan did want to see us in person to confirm the diagnosis because of lymph node involvement and lung spots but our local guy was wonderful about the second opinion, he even gave us Motzers number at Sloan.
Did I miss something before? I don't remember hearing about an enlarged lymph node in the neck. Are the doctor's going to investigate that? The fact that it’s not on the normal path of the disease doesn’t mean it should be overlooked.

[Scott]

I guess my big concern was when a well respected expert said pure seminoma is rare at that age and the urologist disagreed. So who sees more TC?

Maybe this perspective will help: "Nonseminomas tend to occur on average ten years earlier than seminomas. Incidence of nonseminomas peaks in the 20–35 age group while incidence of seminomas peaks in the 30–45 age group. Some GCTs (10–15%) are a mixture of seminoma and nonseminoma and have a peak age incidence halfway between the nonseminomas and seminomas."

[veryworriedmom]

We did get the name of a local oncologist who hopefully will review our file and consult with another center and guide us through the process. What you mentioned is exactly what our friend said. We need a coordinator. The enlarged node was pretracheal which is what the urologist said we should keep an eye on. Less than<2 and other than that scan was normal. I guess seeing any node enlarged is a red flag.I am hoping things will come together next week with the oncologist, new path report, review of the Ct scan with urologist. Thanks for clarifying the seminoma/non seminoma age classification.Not getting much sleep lately. I think my son is starting to get involved in the process and I really hope he will feel more in control when we meet the oncologist. I dont think hes very trusting at this point because of the misdiagnoses to begin with.

[dadmo]

VWM:
Having an oncologist co-ordinate things for you makes me feel better. You still need to watch everthing like a hawk (being a mom you would anyway) but this would be a huge step.

[Russell's Mom]

VWM, Russell was mis-diagnosed by 5 doctors for over a year. It is a long walk back! Russell trusted his nurses and I found that I could lean on the Onoclogy Pharmacist during Russell's chemo. The surgeons were outstanding. I think that if anything, we have learned better how to read into a situation and know who is with us and who is distracted. I still do not sleep well, there is a dormant volcano inside of me, but I am also growing stronger in other ways. Russell still lets me take the lead dealing with the medical crowd, we work together side by side. I know he is taking it in, he shared a comment..."well at least now I know how hospitals work." Slowly we will shift the responsibilty. I wish that I had a magic wand for you! All that I can say is that you are not alone, I understand. Sharon

[fuse929]

Thanks for clarifying the seminoma/non seminoma age classification.

The numbers don't lie, but I'm proof that a 23 year old can be diagnosed to have a pure seminoma. It's been almost 5 months since surgery and still no evidence to prove I'm anything but seminoma. Keep up the hope!

Bobby

[veryworriedmom]

We met again with this new oncology consultant. He finally was able to call the AFIP and received confirmation on the seminoma. We had already seen the radiation oncologist who recommended radiation as that has been the standard of treatment. However the oncologist believed that surveillance was the way to go and my son absolutely agreed. He cited the studys done at Princess Margaret Hospital in Toronto which we already had received. He will consult both with Princess Margaret and Dr. Einhorn but he feels good that as long as my son has the regular scans,chest xrays and markers it will be well monitored. The Pet/Ct showed a tiny reactive node near the surgical site They said the possibility is that it was as a result of the surgery and recommended close follow up. I dont know if anyone has had scans soon after the I/O that showed anything similar. I believe that with careful follow up surveillance is the correct choice for now.
I welcome all your comments and advice. Without this forum I would have been lost. VWM

[Fed]

VWM,

This is fantastic news, and I am glad that you were able to obtain good confirmation of a diagnosis. The reactive node near the surgical site sounds like par for the course, and I am sure that in future scans, they will compare to the original just to make sure (hopefully you have copies of everything and making a file).

Based on what you have said before, a pT1 staging is pretty much identical to mine, and I'm on surveillance (in fact, I have labs tomorrow, so I guess I'll be toasting your good news with some contrast agent ). I had said before in an earlier post on this thread that surveillance probably wouldn't be an option due to his primary tumor size, but considering that there is neither rete testis invasion nor lymphovascular invasion, surveillance could suffice just as long as he sticks to the lab schedule. Stage IA seminoma treated with surveillance carries a cure rate of 80-85%; radiation would likely be overkill, but at least that option is still on the table in case of a relapse (and even in that event, the cure rates are excellent). The important thing here is that your son cannot miss any scheduled labs. After every visit, I schedule the next appointment and mark it on the calendar; that takes priority over anything.

My guess is that now you can breathe a little easier. I hope that your son's recovery from the I/O is going smoothly. Thanks for the update, and keep asking questions as they arise. My best to you and your son,

[dadmo]

VWM:
That's wonderful news. Surveillance can be stressful but with the radiation option as a back up I would say your sons in as good a spot as possible. I'm not worried about him with the follow-ups, that's one of the things that moms can certainly make happen. Congratulations and please keep us up to date on any new information or questions.

[Already Bald]

VWM,
Sounds like you two have made your decision- just be sure to keep all of his appointments, and you should be fine.
You will be the one giving advice here, and soon I just know it.
(Your perspective will be a blessing for new Mom's).

Fed, best to you tomorrow.
Let us know how it goes

[Fish]

VWM:

Glad to hear the good news. Are you doing the followups in Maryland? As I said before, Let me know if you need anything.

Best wishes.

[veryworriedmom]

Hi Fish , yes we are doing the followups in maryland,the oncologist will manage his case and get all the reports so we dont have to call 3 different places. I guess the urologist still will do regular checkups but its a relief to have one coordinator to manage the case. Too bad we had to find that out from a friend and that the urologist didnt advise us that it existed. When I read the NCCN guidelines it said during workup physician should discuss sperm banking but he did not. Im going to post this as a new thread because it seems that its only done after the surgery or before other treatment. Thanks for your help.