My Case

[oscar666]

Hi guys,

I am living Canada.
At the beginning of April 2007, maybe about 10th, I found my left testicle a bit bigger than usual. I didn’t know at all what and how to check, but I felt something unusual there.
Few days later I went to the local clinic and the doctor sent me to the urologist on next morning (04/16/2007) and here are the facts:

04/16/2007 Ultrasound shows 4cm mass in left testis. Tumor markers AFP=95 HCG=2300
04/17/2007 Chest x-ray clear; CT scan found NO abnormal things
04/18/2007 Left Orch;
05/07/2007 Some Pathology data (first discussion with my urologist): 60% Embroynal Carcinoma, 35% Seminoma,5% Teratoma
Relatively big tumor mass.
Vascular invasion? yes or no - i had no answer on this question ???
(Maybe not or not evident ???)
New blood tests (1st after surgery), waiting the results
New CT scan will be done next few days too.
The Doctor said, after these 2 tests they will be more acurate on my case.
Next appointment - 05/23/2007 ( I HAVE TO WAIT 16 DAYS !!! )

How do you think, is it normal to wait so long ?
What are your feelings for my future, guys ?

Thank You.

[Scott]

Hi, Oscar, and welcome to the family. Waiting is tough, but your appointment schedule doesn't sound unusual. As for your future — it's so bright you have to wear shades. :cool: Seriously, you'll come through in great shape. The most important thing is to see your tumor markers drop back to normal and get your CT scan results, so you and your doctors can make decisions about the best treatment approach.

[Already Bald]

Welcome Oscar! You are going to be fine.
One thing I would suggest is to see if you can get a second opinion on your pathology- You really want closure on the vascular invasion question. You may be a canidate for RPLND- that will be determined by future marker and CT results.
You should be ready to ride in Philly in August!

[dadmo]

From what you posted it seems you have as normal (if that's even possible) a form of tc as you can get. If you blood markers keep comming down and the scan and x-rays are clear you may be done with treatment. Joe is right about a second opinion to make sure the staging is done right. Don't worry about hurting the doctor's feelings most of them understand the need/desire for a second opinion and take no offense when it's suggested. If you post the results of the lab work we may be able to give you some guidance as to what course of treatment each of us followed. In any event with proper treatment and not missing any follow-up exams you have every reason to expet a complete cure.

[Fed]

Hey man,
Scott, Joe, and Dadmo have pretty much covered everything quite accurately. The two key things are making sure that your markers come down and that the radiology remains clean; however, you do need a clearer answer on your pathology. Try to get a copy of the report. It should indicate the precise borders and potential spread of the tumor (i.e. rete testis invasion?, epididymis infilatration?, presence of tumor at the surgical margin?); that will determine your staging more accurately. Once all these pieces are together, including your most recent radiology, you will have a better picture of what you can expect. Thus far, though, the data look good. The waiting sucks, but you should be able to retrieve your newest results prior to your appointment with the doc. In the meantime, focus on completing your recovery from the surgery.

[oscar666]

:)

Hi
I am so impressed of your quick response!
Forgot to tell you, I am 39, I have 15-years old son.
I passed trough different fights in my life, but this one is very special. Unfortunately, I am divorced and I am living alone.
But …. I think TC is not disease. It is just different condition of your mind that could make you even stronger.
The orch. surgery went very well. I had no problems with it. The tumor is out.
Now, I have some information. More details are coming soon.
I will post the results as soon as possible.

[oscar666]

I have some questions about post orch surgery period.
Is it normal 3-4 weeks after the surgery to have some light and variable heaviness in abdominal area, sometimes to the back, then again changes somehow, but not strong feeling?
I am concerned about eventual lymph nodes reaction.

[fuse929]

I had my I/O 4/27, and now 11 days later I feel like I'm almost fully recovered. I had some back pains the first few days after the surgery, but I think they were caused by laying/sitting around most of the day. Despite my pants rubbing against the scar, I haven't had any discomfort since the middle of last week. I hope that makes you feel better!

Bobby

[Matt_24]

When your scar starts getting itchy, use white vinegar to get rid of the itch. I have a med-tech buddy who I was complaining about the itch too...I mean, it can itch like crazy sometimes, and he gave me that tip. Besides smelling funny (I only do it at home)...it takes the itch away.

Just my two cents!

[oscar666]

Hello

Today, I had discussion with my urologist and he showed me the results of my last tests.
The blood work (results from May-07-2007) are very good:
AFP dropped from 95 to 4.5 and HCG from 2800 to 5. That means, the half-life times about 4-5 days for AFP and about 2 days or less for HCG.
I was concerned slightly about the HCG decreasing speed, but my doctor said it was good, because the initial blood tests were 2 days before the I/O surgery.
We discussed the vascular invasion, based on pathology report, and this time I’ve got the answer – There are NO any signs of invasion.
The new CT scan, done in other clinic, last week (May-16) almost repeated the findings of my pre-surgery CT scan (APR-16). Generally, no abnormal things.
However, the new results were more detailed regarding the nodes measurement. The “biggest” suspected 2-3 nodes in the area were about 3-7 mm, only one about 9-10 mm. Does anybody know what does it mean?
All the rest looked clean.
I asked my urologist what size of nodes is “normal” and when you could say the node is big, but again, he didn’t give me some exact digits.
So, based on these results, it looks like non-seminoma, clinical stage I.

Then, the doctor said “in meanwhile” when he received the post surgery blood results, he discussed ?! already my case with group of specialists and they decided that following treatment should be RPLND surgery.
I tried to ask some details about the names, the reasons and so on, but finally, I’ve got only an appointment next week with another doctor - Jordan Steinberg who should answer my questions, because my current urologist had no enough experience with next steps.
Now, I have the good news – blood tests were good.
But, I have big uncertainty what is next?
Nobody discuss any chemo variant. Is it applicable?
The surveillance was not discussed neither.
I am a bit confused.
I checked some information about RPLND. Looking at the eventual schedule, in my case, there will be certainly delay more than 6 weeks after I/O surgery.
I am also concerned about the required experience for this operation. Who will make it here in Canada, where to find some information?
And… the most important … I am living alone.
I am divorced and actually I have no family or friends. Just 2-3 people but they are not able to stay with me and help me for recovery period.
I don’t know what to do.
I was thinking something like 2 doses chemotherapy will be a reasonable choice for me, or I am wrong?
If the chemo is so effective, according to some articles, why this option is not so popular and RPLND is always the most suggested in such cases.
EC might skip the nodes, why is not good to apply the 2-chemo right now, if something small was still really there or even somewhere else in the body?
RPLND will give more accurate diagnostic but is it a real treatment?
Ok…
Thank you guys.
Any help appreciated.

[dadmo]

Chemo is the nuclear weapon of medical treatment and should not be used unless there are no other options. I think your doctors feel that you are cancer free with one big question. What's in those lymph nodes? The only way to find out is to have them removed and examined. If it should turn out to be cancer then you will get the required chemo. If you get chemo first and the nodes are still large the RPLND will still be requied and it's much more difficult after chemo.
I do have to commend you doctor for getting your case reviewed. It's the sign of a good doctor when he knows something beyond his knowledge.

[oscar666]

Dadmo, thank you for your comments about chemo.
You are right for reviewing my results, and having some additional opinion just I don't know how to do it.
It takes time to find the right specialists and I have no names or places where to go.
Next Tuesday I have to see the RPLND doctor and the discussion will be on this subject only. What will be my choices, to say yes or no?
How long RPLND could be delayed after I/O?
Do you think I might have any other option in this short timeframe?

[Adrr-Atta]

I am also concerned about the required experience for this operation. Who will make it here in Canada, where to find some information?


Hi oscar666,
I had RPLND done in July 2006 at Toronto General Hospital by Dr Michael Jewett (http://www.uhnres.utoronto.ca/researchers/profile.php?lookup=2769). He is supposed to be an expert in these kinds of surgeries. Great guy.

[oscar666]

Robert2112, I did not see an oncologist yet.
I am trying to find some way to get it.
Actually, for me, any access to the doctors is not easy at all, and my test results had some "standard" delays. For the second CT scan, I went to another (private) clinic, because the "standard" delay would be up to 2 months in public hospital (Jewish General Hospital, where is the place of my urologist).
I don't want to compare US vs Canadian health system.
The truth is, that I have no enough information, family, friends, relatives or anything else that could help me to clarify where am I and what to do.
I am asking my colleagues at work, here, there but as you know is not easy to discuss cancer problems.

[oscar666]

Hi all,

I finally received a real copy of my last CT scan.
In my previous message I just improvised about “the nodes” based on the information I remembered after urologist’s discussion. Apparently, they measured “mesenteric nodes”
Here is the real report. Please take a look and give me your advice.

Radiologist’s Final report
Exam #X 2007 May 16 CT Abdomen /Pelvis (C+)

CT-CSAN OF THE ABDOMEN AND PELVIS:

Ct-scan of the abdomen and pelvis using oral and i.v. contrast and delayed sequences have been obtained.

Clinical Information: post testicular surgery for embryonic cell carcinoma, operated May 18 2007.

Apparently there is a previous CT-scan a month ago. We do not have this examination for review at the moment.

FINDINGS:

There is a tiny dot size hypodensity in the segment VII of the liver probably incidental and there is another one in segment III. I suspect those are not highly significant. They should be compared with the previous study.

Gallbladder, biliary tree, pancreas, spleen, kidneys and adrenal glands are normal.

There is no sizeable retroperitoneal adenopathy identified. However we see some mesenteric nodes. Some of them are not size significant. I , however, measured the most important ones: one of 8mm (image#), one of 10mm, one of 7mm and one of 8mm in the ileo-caecal region. Although they are not in the lymphatic drainage of the testicle, in the clinical context, they have to be surveyed I believe.

GI tract unremarkable.

No inguinal adenopathy. There are a post-surgical changes in the left inguinal region. There is slightly elongated left iliac node lateral to the external iliac vein to compare and survey on the next appointments.

Lung bases and bones are unremarkable.

CONCLUSION:

No sizeable retroperitoneal adenopathy in the renal hilar region.
An intermediate node in the left iliac region.
There are some mesenteric nodes as mentioned above. They might be incidental findings, but in the clinical context they need to be surveyed.
No other abnormality.

Reported by … May 16 2007
------------------------------------------


Note that Doctors somehow decided the RPLND as only suggested treatment BEFORE this report! No other possibilities were discussed so far.
They seem to be based only on my returned blood markers after surgery.
I really don’t know if RPLND is the right way, assuming that:

- My pathology shows 60%EC (and no evident vascular invasion)
- Apparently, my case is both tumor marker’s sensitive
- This CT scan shows other things but, no sizeable retroperitoneal adenopathy
- The delay between I/O and eventual RPLND will be > 6 weeks
- Not clear who and when will make this surgery in Montreal

What is the advantage of RPLND in this situation?

According to my urologist – “You should discuss RPLND details next Tuesday” with another doctor (who doesn’t seem to be exactly the surgeon he is an oncologist BTW) and somehow, he will try to insert my case in some other’s, say RPLND doctor’s schedule. What I could say on this meeting? Is there any choice, you think?

Regarding the timing, I am really concerned, because any eventual new appointment with known TC RPLND specialist from Toronto or US for me seem to be almost impossible or at least too late. I have some private insurance (Canada is OK for sure) and I could spend some additional money, I am ready to go, but the big problem is that I am alone.

English is not my mother language, so probably I still have problems to explain what is my situation. I've never touched the health system services since I have been in Canada (8 years). I am already Canadian Citizen, but I still don’t know how to deal with so many things. I am not complaining, I just work, pay my taxes, enjoy the weekends and try to get some new friends in meanwhile. Now I need help. At least to make this decision.
Actually, what I might say on next Tuesday’s appointment?
A)No, thanks (What next? Maybe surveillance? But who will take care of it?) No joke. This is a real issue with all delays, CT scans etc.
B) Let’s push the RPLND “as soon” as possible. (Other details like nerve sparing? Lap? Oh boy)
C) ???


Thank you.

PS
I schedulled sperm banking for Monday.
Organizing this simple thing needed at least 2 days for me.

[mstlyn]

Robert,

It's great all you do to help people understand what is happening to them, what the test results mean, what all the possibilities and probabilities are, finding doctors, etc ... I know how much help you, and other members have been to me and I will never forget it... A family for life ;that understands from the depths of the heart and soul, what everyone here is going through.



Oscar, you are in a great place with great people on this forum. You will get some of the very best advice right here. I have learned so much about TC that I have had to point certain things out to my sons oncologist! "sigh"

Robert, do you know of any experts in Canada? I don't recall ever seeing any posted on this forum, but then I have done so much reading that maybe I forgot. Hoping you know someone there!

[Scott]

...do you know of any experts in Canada?The TCRC experts list includes several.

http://tcrc.acor.org/experts.html#canada

[oscar666]

Today I had an appointment with Dr Jordan Steinberg (oncologist)
( http://www.mcgillurology.com/bio/steinberg_j.htm )
We reviewed again the pathology report, blood tests and both CT-scan reports.
The following was emphasized:
-60% EC – too big risk to go to surveillance only
-No evident invasion, Chest X-Ray OK, Blood markers back to normal – good signs
-CT-scans, retroperitoneal nodes unremarkable – good, but still uncertainty
-The other CT-scan (hopefully incidental) findings are not directly related to TC
Dr Steinberg told me that really, the three variants are possible and we reviewed shortly the well-known advantages and disadvantages.
However, he suggested RPLND as a most appropriate.
2-cycle BEP is the other possible choice, and on third place - surveillance.
He gave me some time to think, but I choose RPLND.
No time left, 6-th week is gone - It's very dificult to "think" on this subject.
Now I am waiting the phone call for first available schedule, hopefully next days.
He will perform the surgery. His experience is something like 5 RPLND’s … per year. .
I don’t know how many years, though. He is young.
He promise me his 110% efforts to keep the nerves.
It should be “open, nerve-sparing” RPLND with all typical risks for full bi-lateral type.

I hope I did the right selection !
Hovewer, still some days to change my mind but for today I am done :)
I feel very good and I am going out to enjoy the life.

Yesterday, I did sperm banking. They said the sample was good, with many and fast swimmers etc. Just the count was slightly low but still good enough as a backup.

Thank You.

[oscar666]

Robert2112, please, backup and clean your PM box.
I want to send you a private message.
Maybe I have to clean my box, too :)

[oscar666]

Hi people,
On my oncologist's appontment last Tuesday I agreed RPLND.
I didn't want to cause any delay with additional "thinking" between I/O and this surgery.

Could you tell me what is the real situation regarding this delay?
How important is to make it within 6 weeks after I/O?
How many people actually were in this timing?

In my situation, the 6th week is gone today. No call for RPLND date.
I don't know...
I feel very good and I am asking myself.
7,8,9,10,11 weeks .... or just switch to other way?

Thanks

[oscar666]

Robert2112,
Thank you very much for your comments.
Here are the key findings so far:
-60% Embroynal Carcinoma, 35% Seminoma,5% Teratoma
-Markers: before I/O AFP=95; HCG=2800
-No vascular invasion
-Markers: 19 days after I/O AFP=4.5 and HCG=5
-Two CT-scans (before I/O and 1 month later). Both reported no retroperitoneal adenopathy. Second one noticed some mesenteric nodes (“Although they are not in the lymphatic drainage of the testicle, in the clinical context, they have to be surveyed I believe”.)
The oncologist I met is the (only I know) RPLND surgeon. After short discussion, I directly agreed on this surgery and he told me that in this case I would be scheduled ASAP. He operates in 2-3 different hospitals and because I had no special preferences for the place, schedule would be done ASAP “in several days”.
I had impression that for him it was no so important to give my decision at the moment but I am sure I definitely confirmed the RPLND choice.
The thing is that is really impossible to contact him again in several days.
I am somewhere “in the system”, waiting for this date.
No blood test, X-ray or CT scans prescribed for the moment.
Somebody should call me. Hopefully soon.

[oscar666]

I just received a call.
Thank you Robert for the e-mail!
He called me 10 minutes after I sent him the e-mail.
My doctor could not schedule RPLND before end of June!
However, he will try to check for any earlier available date in other guy's schedule.

What I could do?

[oscar666]

Robert,
Your e-mail template was great.
I have a question for you.
Please take a look again on my CT-scan report.
I published here the second one. (The first said nothing at all about nodes.)
Which 2 nodes you are talking about?
They really noticed some nodes, but not retroperitoneal ones ?!
As long as I know, RPLND takes care only for them because they are in the lymphatic drainage of the testicle.
Am I wrong?
What is the normal (not the scary one) relation between mesenteric nodes and TC?

[oscar666]

I received phone call today regarding RPLND.
It is scheduled for June 28.
That means 10 weeks after I/O.
Hope, I am on right spot.
(I almost started to accept the surveillance fortune.)

[petep]

I sent you a pm in response to your pm to me...

I re-read the thread....it seems as though your markers came down a great deal post surgery...bhcg still slightly elevated....some say 5 and under is normal...some say 2 and under....and some say anything above zero is not normal....I asked einhron once and he responded by email saying some males have slightly elevated levels of bhcg and will never have tc.

I suppose I was wondering are the doing the rplnd as a post surgery follow - preventative (like they would do 2 rounds of BEP)...or are they doing the rplnd because of the CT scan is showing enlarged nodes...if it's the former, it would seem surveillance is an option...if the latter, then clearly action must be taken....either rplnd...or chemo...

If action must be taken because of a positive CT scan, I'd be interested to hear others opinions (understanding we are not the experts of course) on the following...

with embryonal and teratoma, if they do an rplnd...there is still the risk of embryonal straight to the lungs, or not getting all nodes...which we all know....but the question, is what if an rplnd is done first, then there is a recurrence - chemo would be req'd of course...

but sometimes I read about people with teratoma having chemo, and then needing rplnd to remove the residual mass due to teratoma not shrinking with chemo...

so if you have an rplnd first with this pathology, is there a risk of needing a 2nd one...

the data suggests no matter what course is taken, the cure rate is very high either way....but just trying to understand why one would choose rplnd over chemo, when there is a recurrence or residual post orch. with this specific pathology (embryonal + teratoma + seminoma)....maybe the percentages of pathology drive the decision.

[oscar666]

Both doctors strongly suggested RPLND as preventative and for better diagnosis, NOT because of CT-scan (at this moment the results were not yet arrived).
They were based on pathology + “good” post I/O results (not on “suspicious” ones).
I agreed on RPLND, but honestly, I share your thoughts and I am still hesitating.
The missing part is an appointment with medical oncologist and I will try to have one.
I am thinking for second pathology report too.

[petep]

good post robert -

what I was looking for was a reasoned discussion and you provided one. It was clear that the rplnd advice was given before the CT scan was in...so all the docs knew was there was no invasion, and they had markers available....but they were strong on rplnd...I just wanted to understand the reasoning given the embryonal and teratoma components and it seemed the CT scan and chest x ray were clear.


I'm still not clear though if there are involved/enlarged nodes or not - that was the central issue...if there are, you need to act no doubt...but if there are no enlarged nodes (clear CT scan), markers normalize, chest xray is clear, then surveillance is a viable option, as is RPLND or 2 x BEP.

I do recall asking einhorn what he would do in my specific case and most importantly I wanted to know why....he said he would choose surveillance (for my particular diagnosis)...and he gave his reasoning, for himself...and a major component was he felt he would not worry every month for the test...that was me - I don't worry...but its not for everyone.

For me - the most important aspect - I wanted to know that if I wait and face a recurrence, would I diminish my cure rate chances by waiting...and he said no, as long as I keep my monthly checkups and if I do have a recurrence, act quickly. For some, the apprehension would be unbearable...not in my case.

I think in the end it is a personal choice and as I pointed out, when you get beyond the subjective discussion, the data suggests that for an early detection, the choices are equally good and depend on the person. I rely on data first, then take the subjective compenents as a secondary consideration.

Fortunately there is a great deal of data for this cancer.

[petep]

robert - I re-read your post and had a question. You wrote:

"Maybe one could have the RPLND , and have less chemo than they would if it came back in a year. No chemo is best, less chemo is better than more."

Is there a protocol for this...my understanding was when it came to chemo...it was either 2xBEP, post surgery when all seems clear, as a preventative measure...

or 3xBEP (early lymph node detection) or 4xBEP (more advanced cases/lungs)....and of course, alternatively to 3xBEP, 4xEP.

But it would be good to know if there is a protocol that says if you have rplnd, then a recurrence, that you need less chemo...but it would be a factor in the analysis.

[oscar666]

Time Comparison

Petep, I am checking your log:
I/O: Dec 08 2005
Chemo: Feb 20 2005
About 10 weeks.
How many tests, appointments and waiting did you have?
Where is the surveillance starting point?

My RPLND is scheduled about 10 weeks after I/O.
What happened so far:
1 Blood test.
1 Chest X ray
1 CT scan.
Pathology
Waiting ....1 appointment (3rd week)
2 blood test
1 Chest X ray
2 CT scan
Waiting ....2 appointment (6-7th week)
Is this surveillance, since when?
Could be something different during this time?

[petep]

to follow up on my timing...

dec 6th - primary care visit in am for feeling lump in testicle, urologist in pm
dec 7th - ultrasound, blood work...back to urologist with results
dec 8th - orch.

following week, urologist has the ct scan and chest xray done - back to him with results...(all clear) - he presents options - says he can do an rplnd, but says I should see an oncologist/expert first before deciding on anything as surveillance may be a good option for me - suggests benedetto in miami. I schedule that appt for early jan.

between xmas/new years - visit with einhorn who re-reviewed everything, including slides. he also referred me to an oncologist at the univ. of miami - same guy, benedetto - for local follow up...at the end of that visit I said I was leaning towards surveillance....as a side I paid for the airfare out, a hotel room and the visit...probably about $700 for everything...best money I ever spent for peace of mind that I saw an expert.

very beginning of jan, visit with dr. benedetto in miami...he re-reviews everything - agree on surveillance.

first of monthly checkups, in early feb...chest x ray fine...blood bhcg at 2.6

one week later have blood and ct scan to follow up the slightly elevated bhcg (my markers were all normal pre surgery)....bhcg at 4.6 and enlarged node shows up...that was on a wednesday.

start chemo that monday, feb 20th.


my last chemo was april 17th - and I went for surveillance then every month....now I'm every other month.

I hope that helps....

pete

[mstlyn]

I sometimes try really hard to understand why people choose surveilance in these instances. At this point, it is a personal choice. I respect that but the part I can't really understand is why someone in a situation where they had small nodes, would not do the surgery. Being that we all know about bypassing nodes to lungs etc etc, lets just skip that, and go straight to the reasoning. If someone could have surgery, that COULD possibly keep from having chemo, why would they not ? Dr Nichols says it best when he says that he would rather have surgey than chemo, and he is an oncologist. The RPLND value in staging is well documented. Maybe one could have the RPLND , and have less chemo than they would if it came back in a year. No chemo is best, less chemo is better than more.

If someone had an blood clot, and were told that they had a 30 % chance that clot would move without surgery, and cause a major health issue, or we can sit and see if it goes away, what would you do? I would have it out in a heartbeat. I would do everything possible to have it not be worse.

There is a time issue. You have already joined the "game", why would someone want to wait for the possiblity that you have to join again down the road, with a more progessed problem? small problems get bigger if they are allowed to remain. Big problems dont get smaller without bigger intervention.

People do surveilance to avoid an operation, why not have the operation for the chance to avoid chemo? I can tell you personally that I would do the operation 10 times before I ever would want to do one more round of chemo.

PCRPLND is harder than an RPLND. Why let possible cancer spread further to avoid an operation you might need anyway? If it turns out you didn't need it, and everything was clear down the line, then maybe you avoid chemo.

I am not sure what you meant by " if they cant get all the nodes" so I will skip that one.

I can say that in my experience over the years, you can trace the problems in treatment to a couple of different places. First would be the lack of knowledge or action from when a Ultrasound confirms a mass. Second one would be when someone who probably needed a RPLND , had to wait for whatever reason, or chose to watch things, and presented later with advanced disease. I have seen this happen sooo many times in the attempt to avoid the operation, or a Dr using the back-up of chemo later. Yes it works, for the most part, I dont understand passing on the chance to limit or avoid chemo. I understand it is a personal choice, but I have often said that with the advance and achievement of chemo, I think that they now discount the value of the RPLND, and the value of the RPLND/adjv chemo to get the best possible odds. There was a time they did RPLND straight on, but the problem was they were finding that a high % of men did not need it. 30 % stiil did, and were lucky to have it.

What if there was a false negative scan? it happens 20 % ( roughly) of the time.

To me, surveilance is playing the odds. That's ok if you are comfortable with doing that. Some are, some are not. Sometimes it is very clear when to do that. Many times it is not. If you wanted the best odds of being cancer free, as fast as possible, RPLND/Chemo offers the highest numbers. If someone is playing the odds, wouldnt you want the best odds of being cancer free?

That is the ultimate goal. With the least treatment possible.

I am not speaking about Oscar. I am speaking in general. I would personally rather be agressive upfront, instead of saying what now later. I will say this again. When they told me that they saw a couple of very tiny nodes, I said get them out. If ( playing the odds again) there was any chance that this could be cancer, get them out. I want cancer out of me as fast as possible. even though this choice was the lowest possiblity for me by %, it still didnt work. I had advanced cancer. There is reasoning for both. To me , the biggest reason was to get rid of it, as fast as possible, and as sure as possible. Because of the action I took, I have never had another problem again, and I knew that the whole 11 years that I probably wouldnt. To me, that removes alot of stress. I never had to look back.... Priceless

R

I would give anything to go back when Anthony first started having symptoms, and have the knowledge that I now have about TC.

I would be all over the doctors (my sons doctor waited several weeks until Anthonys teste was completely rock solid to send him to an urologist)

And then I would have insisted that the urologist IMMEDIATELY get the orchiectomy done, (instead of waiting an additional 10 days) AND if there was still lymph invasion; RPLND TIME .. and as a mother I would not want to see my child have such an operation.

Surgery, especially a biggie like RPLND is not a decision to make lightly, but in light of all I know now, I wouldnt want to wait.

Thats just my opinion, but things are scarier for us now; so that naturally influences my feelings about TC treatment. I say that since TC is so aggressive, BE aggressive!

Something needs to be done about DOCTORS. They shouldnt wait to find out about how to deal with this by waiting for TC to show up at their door.

And when it does show up at their door, they need to immediatly consult with experts, and move quickly.

[oscar666]

My RPLND schedule was changed from June 28th to 22nd.
Weird thing …
As the date comes, every day I feel better and … not sure for need of RPLND.

[oscar666]

I've got the blood work (yesterday test).
AFP 1.4 bHCG<1

I am “officially” preparing for RLPND scheduled June 22. (9 weeks after I/O)
Honestly, I am still hesitating
Apparently, not many people from standard medical staff know about TC and RPLND.
I hope my surgeon knows.

Should I sacrifice this good summer and my real wiling to live now!
I feel so healthy and strong

[dadmo]

One of the hardest things to do is choose between surveillance and treatment but once the decision is made you should stick with it. You really don't want to live with the anxiety of questioning your decision. It's great that you "feel" healthy, The RPLND will confirm that. You won't lose the summer, just think how sweet the back half will be when you get an "all clear".

[petep]

just keeping up with your thread - great news on the markers...normal...which is a very positive sign...cancer grows - especially embryonal...so markers coming down to normal is very positive.

dadmo is right - not matter what choice you make, will be a good one - and either choice will not diminish your cure rate....

pete

[oscar666]

Pete, thanks for your concern.
I want to do my best. But …
Looking for your and my first weeks after I/O you could easily see the difference.
I am not talking about the reasons just the facts.
You succeed to do times much more tests and see TC doctors within these weeks and you even started the best treatment for you, while most of the time I am waiting calls or leaving voice messages.
I am thankful that I feel very good, my last blood test are good.
Tomorrow, I have an appointment with the residents (of my surgeon).
I think, theoretically I know much more about RPLND than they do.
What to ask them? Why they are going to make a bi-lateral while all good TC centers suggest a template / nerve sparing one? Guess why?
Or … if they prescribe the CT scan now (I could not prescribe one “myself” earlier), would the results be available before scheduled date? Who will see them? What do they change actually?

These are the things in my head.

[oscar666]

I was wrong about the RPLND technique. I thought that they are preparing me for old-fashion bi-lateral type.
The young doctor from Dr. Steinberg’s team told me that they would perform a modern nerve-sparing one.
I hope I would contact the surgeon to confirm this.
RPLND is scheduled for June 22.

[petep]

Yours is a good post for others to follow - for the message of being your own advocate.

If there is a nice thing about TC relative to many other cancers, is there is a great deal of data...so when a doc suggests something, you can ask why...and listen to their logic.

My roommate from college specializes in cancers of the retina - he is an eye surgeon at mass eye and ear....and years ago, he told me whenever a doc suggests something, ask them how many times they have seen your type cancer/pathology, and how many times they suggested the same procedure/protocol....his point was that often there are several options, depending on the pathology, and many docs just do what they are used to doing...

It is unforunate you must wait for results...where I go - sylvester center at the Univ. of miami - it's all digital and everything is there...you walk from ct, to chest xray, to labs...up to see the doc...and he pulls up his computer and everything is right there....

Even with film, a doc can have them process the film while you wait, and you can deliver the film to the doc in person that day - for my first set of tests from the urologist, (where everything was not under one roof) that's what I did with my chest xray and ct scan. He sent the orders to the hospital - Pete must get his reults immediately after the film is shot, so he can bring the results to me...he squeezed me in between patients...it only takes a couple minutes to view the results he said....

Don't hesitate to be demanding if you think that you are not getting enough attn or getting answers quickly....

Feel free to print out my timeline, walk it in and say this is your expectation. If Dr. Einhorn, a world renown expert, can get back to people he does not even know, your own doc can do this for you.

pete

[oscar666]

I am just waiting a confirmation call to start my bowel preparation for RPLND scheduled for tomorrow. Honestly, I could not handle any reschedule now.

Strange thing is the primary RPLND. You go to such big OP and hope to be unnecessary.

Thanks.

[dadmo]

Remember even if they don't find cancer the teratoma still needs to come out. Anyway let's hope you find out you didn't need it.

[Scott]

We'll be thinking about you, Oscar. Don't be in a rush to start eating again after surgery, and be sure to stick with the low-fat diet for a while. Let us know how you're doing as soon after surgery as you can.

[Margaret]

I am thinking about you OSCAR and hoping all goes well. Keep in mind what Scott said about eating or drinking too quickly. About 5-6 days post surgery is when safe to start drinking sips if your Dr. says you are ready. I know it seems like a long time, but you will be happy you waited in the end.

About 2 weeks of no fat in your diet post surgery...if you need meal ideas just ask me. I got pretty creative in making meals that contained zero fat.

Hang tough!!! You can do it!!

[Margaret]

Oh and I forgot to add that Boyce had a full bi-lateral RPLND and they also did the nerve sparing. It was a great success. Good luck with everything.

[Already Bald]

We are pulling for you here Oscar!
Don't eat any fat for a few weeks- just as Margaret wrote. I know not all centers follow this practice post RPLND, but it will help if you do. Let us know how it goes, and enjoy the weight loss :)

[Mom]

Poor Already Bald, I made him show me his scar a couple of weeks ago, same as my husband's, wear your's with honor. It represents a heck of a challenge in your life. One that you met and overcame! Good luck. Dianne

[Fed]

Oscar,
Hang strong, and take it easy during your recovery. Don't rush into things. The baby steps will ensure that you will be back in tip-top shape at the appropriate time. We're pulling for you,

[Already Bald]

Oscar,
I just realized that today is my first anniversary of my RPLND!- I'm a wimpy fattie and I came out fine!
I ws in you shoes a year ago yesterday, and I know how you feel.
You just need to have faith and have trust in the skills of your surgeon.
Just remember, there will be a lot of people in that OR with you.
Now, Saturday is my 6th year wedding anniversary- I guess I have to do better than a card this year...
Post an update when you can.
Joe

[Scott]

I just realized that today is my first anniversary of my RPLND!That's cause for celebration, Joe! Congratulations!

[oscar666]

Thank you, guys

I am returning from my hiking / running exercise.
I feel in very good shape.
They confirmed my surgery for tomorrow morning so I am starting to mix my first PICO-SALAX sachet.
I enjoyed the simple breakfast and I am already on transparent liquids only.

I waited to see some news from Ski1181, his RPLND was a week ago.
Hopefully everything is OK!

Joe, happy 1st anniversary of RPLND!

Now is my turn.

[Fed]

I just realized that today is my first anniversary of my RPLND
[...]
Now, Saturday is my 6th year wedding anniversary- I guess I have to do better than a card this year...

Congratulations on both fronts, Joe!

[Already Bald]

Poor Already Bald, I made him show me his scar a couple of weeks ago, same as my husband's, wear your's with honor. It represents a heck of a challenge in your life. One that you met and overcame! Good luck. Dianne

Dianne, sorry to frighten you by showing you my belly :eek:
Is was great meeting with you.
Majbritt and I are celebrating our anniversary at a Danish summer solstice bonfire- there is a name for it that I've forgotten- Rune??
Then next week- Tim McGraw and Faith Hill, and I got good seats :) .

[oscar666]

I understand your idea about the chest x-ray and CT-scan.

:cool: These weeks, we have bunch of holidays.
Do you think any chemo could start in next 4-5 weeks (even I need one)?
I don’t think so!
Let’s go with the nodes now, and pray that everything is clear.

(My PM mailbox is ok now)

I am very happy for Ski !!!

[NavyHoldi99]

I understand your idea about the chest x-ray and CT-scan.

:cool: These weeks, we have bunch of holidays.
Do you think any chemo could start in next 4-5 weeks (even I need one)?
I don’t think so!
Let’s go with the nodes now, and pray that everything is clear.

(My PM mailbox is ok now)

I am very happy for Ski !!!

Hey Oscar -

Good luck tomorrow! I'll be thinking of you and wishing you a speedy recovery. I'm still getting my appetite back...some things sit better than others. You will do fine.

WRT your question about chemo...my oncologist mentioned that I'd need at least 4-6 weeks of healing before we start any chemo...so there you go. Hopefully you don't even need it!

Take care, buddy!

[mstlyn]

Just don't drink or eat too soon. Going by Anthonys experience and what the experts say, 3 or 4 days after surgery is risking a bad episode that you don't want.

Will be glad to hear from you, so let us know how things are going for you when you feel up to it.

We will be thinking about you, and it will be over and you will be on the mend before you know it.

hugs,
Tammy & Anthony

[NavyHoldi99]

Just don't drink or eat too soon. Going by Anthonys experience and what the experts say, 3 or 4 days after surgery is risking a bad episode that you don't want.

AMEN to that! Take it slow with the liquids!

[oscar666]

Just to restore the missing info and add some news:
I had my RPLND done on June 22nd.

My post-RPLND period goes very well.
The wound heals well. I am able to do all my home work without any problems.
I drive my car, walk around and so on.
However I am getting tired after several hours’ activity.

News:
The official RPLND pathology came today. They removed 19 nodes. All clear.
My doctor said because everything is clear, he wants me after 3 months with X-ray and blood work.

Peter (oscar666)

[Already Bald]

Peter,
TERRIFIC NEWS on the All Clear!! :)
Congrats.
You will get your energy back, it takes time to heal.
Keep walking and moving around, nothing vigerous.
Joe

[Karen]

Peter,
Fantastic news :D !! Sounds like you are recovering very nicely and well on your way to putting this behind you!

[Mom]

Great news, Peter. Please do not be concerned about being tired. The only time I have ever seen my husband "tired" was after his RPLND (and of course after biking 70 miles in LAF last year). He had his RPLND in September and didn't start to feel strong until January. You have done remarkably well and quite frankly it is good that you feel tired because it keeps you from doing too much. When your body speaks, listen. Dianne

[Margaret]

I am really happy for you Peter!!!

[MRMRSU]

Hi Peter: ALL CLEAR - that's great news. Happy to hear your post-RPLND recovery is going well. That crisp Canadian air has to be the reason why things are going so well! :) We were there last year, and the air was so clean, it hurt to breathe!!!

To many more future "ALL CLEAR's"

[oscar666]

Here is the story:
04/16/2007 Ultrasound: 4cm mass in left testis. Tumor markers:
04/16/2007 Blood: AFP: 96.1 bHCG:2880 LDH:228
04/17/2007 Chest X-ray clear; CT scan: NOTHING abnormal in retroperitoneal area.
04/18/2007 I/O surgery. All OK post surgery period, 5 days off and back to work.
05/07/2007 Pathology: Non-Seminoma, 60% Embroynal Carcinoma, 35% Seminoma, 5% Teratoma
05/07/2007 Blood: AFP:4.9; bHCG:6;
05/16/2007 Second CT- Scan.
May 2007: Struggle to get “ a second opinion ”
May 2007: Decision: RPLND. (My 3 doctors suggested it because of EC%, CT-scans had no definitive findings). Chemo not discussed.
May-June 2007: Big struggle to get an earlier RPLND date. Earliest: 2-months post I/O. Agreed.
May 2007: Sperm banking,
06/07/2007 Blood: AFP:1.8; bHCG<1;
06/22/2007 Left side, Nerve Sparing RPLND. Dr Steinberg, Montreal, Canada. All GOOD! RPLND Pathology: ALL CLEAN!

Check-up schedule: Every 4-months (for 2 years). Blood & Chest X-ray only.
Post RPLND: Very good! About 3 weeks, almost like new.
July, August 2007: Enjoying the Life.

--------------------------------------------------------------------------------
10/23/2007: 4-month follow-up: ALL CLEAN!
Blood: AFP:0.8; bHCG<1; LDH:160
Chest X-ray: OK
--------------------------------------------------------------------------------
2/12/2008: 8-month follow-up: ALL CLEAN!
Blood: AFP:1.6; bHCG<1; LDH:150
Chest X-ray: OK
--------------------------------------------------------------------------------
Next check-up: May 2008

[Fish]

Great news Oscar,

CONGRATULATIONS!!!!

[Margaret]

Great news Oscar and snappy new picture :D

[Fed]

Fantastic, dude! Keep enjoying life after cancer!

[S L]

I am thinking about you OSCAR and hoping all goes well. Keep in mind what Scott said about eating or drinking too quickly. About 5-6 days post surgery is when safe to start drinking sips if your Dr. says you are ready. I know it seems like a long time, but you will be happy you waited in the end.

About 2 weeks of no fat in your diet post surgery...if you need meal ideas just ask me. I got pretty creative in making meals that contained zero fat.

Hang tough!!! You can do it!!

Margaret,

I'm finally (was originally going to be done last Halloween but Bleo Toxicity changed that) going in for my RPLND at MSKCC with Dr. Sheinfeld in early March. So, I will be looking for meal ideas. Kindly pass them on.

Thanks,
Steven

[oscar666]

Thank you!
I forgot to mention, my ejaculation is returned.
After RPLND was almost zero. Now is restored.
As Dr Steinberg said, “you will not shoot the wall from 10ft but it will came back” :) .
He is a great surgeon and he did a perfect operation.
BTW, he is not anymore in Canada (He works in US now).

[Margaret]

Margaret,

I'm finally (was originally going to be done last Halloween but Bleo Toxicity changed that) going in for my RPLND at MSKCC with Dr. Sheinfeld in early March. So, I will be looking for meal ideas. Kindly pass them on.

Thanks,
Steven

Yummy, let the fat free ideas start rolling :p

Chicken Noodle Soup:
NO chicken of course
Cook onions, celery, mushrooms
Add fat free chicken broth
Add fat free no-yolk noodles
Salt pepper (garlic if you like) and parsely

Baked potatoes
Stuffed with grilled veggies
Topped with fat free sour cream and fat free cheese

Omlets
Fat free egg beaters
filled with spinach and mushrooms
Fat free cheese

Keep in mind there is always fat free gummy bears and Beer (no fat ;) )

NO nuts for 6 months!!

Let me know if you need any other ideas

[Fish]

I had to eat very low fat for 4 weeks after having stones cleared from my bile duct and before the operation.

If you crave chicken, I found that if you take the breast and remove all visible fat, then cut into pieces and boil virtually all of the fat is removed-- of course so is the flavor :D Unfrotunately you can't use the cooking water.

White albacore tuna packed in water is only 1g fat per serving.

Wine is also fat free :D , but doesn't mix with pain meds :( .

I ate a lot of cereals with skim milk, pasta, be sure to check pre-made pasta sauces, some add quite a bit of fat, oatmeal, low fat soups. I made bread-maker bread, omitting the oils, not quite the same , but edible.

Fruit smoothies with non-fat milk - you can add powdered skim milk or powdered whey for extra body.

For candies, licorice and red "licorice" are usually fat free, check the labels.

Jello, I think is fat free.

I could get away with the harder cheeses like parmesan and romano, they tend to have less fat and because of the strong flavor, you don't have to add to much to pasta or a salad.

Salads with basalmic vinegar or non-fat dressing are good also.

Most veggies and friuts are low fat, as are some of the soy-based meat substitutes. Again, check labels.

Tofu - I can eat this plain, double check labels for fat content.

Eating low fat can be done, just takes a bit more planning and attention.

Good Luck.

[Margaret]

The only thing I would caution about Fish's ideas (and by way, he gave lots of wonderful ideas :) ) is I would avoid the tuna and chicken.

Really no meat or fish is allowed for 2 weeks according to Sloan. Maybe other hospitals are not as strict. Not even that fat free lunch meat is allowed. Once you pass the two week mark, the tuna is a super idea, so is grilled chicken.

[Fish]

Good point Margaret. You should definitely go with whatever the doctor recommends. You could probably even write up a list and ask them to look over it. It's interesting that when I had my RPLND in 1988, there was no mention at all about eating low fat.

[Margaret]

That is funny. Just think what they will have you doing in another 20 years! :p I kept the food list from Sloan for easy reference because it is hard for me to remember. You should have seen to look Dr. Sheinfeld gave me when I told him I thought I saw fat free hot dogs and if that would be okay :eek: .