An agonizing decision

[Krokar]

... in the case of recurrance, regardless of whether I opt for RT or surveillance, is carboplatin still an option? Or by that point is it a whole different ballgame?
!

I believe you thought if after initial treatement with Carboplatin you still can be cured in the case of recurrance ? From my research there is the same tratement like you are on surveillance, depends if lymph nodes are smaller you can get RT for recurrance or BEP.

I was treated with Carboplatin 2 years ago and it was very hard to explain anybody from USA that this could be good option. I'm happy that Dr. Einhorn send this mail to you, some kind of proof that this is something which can be consider for cure Seminoma in I. stage.

[Sans rt1]

Dadmo - -

That is tragic, but I think all too common. About a year ago, my cousin was diagnosed with throat cancer. He chose to follow the advice of his doctors, rather than to do any research himself (his wife did some, and he refused to heed what she had found). His surgery was botched, and there were major complications with his treatment - and he chose not go through the final rounds of chemo. So far, it looks like all is OK 1-year out, but I think his odds would have beem much better had they first consulted with the experts and verified his battle plan.

I have told folks I know that one thing I have learned through this is that knowledge is a key in cancer treatment. There are so many kinds of cancers that oncologists may not see yours very often, so might just be referring to standard published treatment protocols, some of which may be a little out of date. Also, there are probably medical centers that specialize in most types of cancer and many will consult with you or yourr doctor for no charge over the phone or e-mail. Sometimes traveling there for a face to face consultation or even treatment will save your life.

In the beginning I was just going along with what my doctors said. But I read Lance Armstrong's book, and saw how he approached it and it opened my eyes to the fact that he and his mom's research probably made all of the difference - they were not afraid of offending their doctors (and their doctors were professional enough to support their decisions). At that point I spent a lot of time on the computer, gathered my own information, and eventually found this Forum. So far, my TC journey has been fairly simple - but even so, my doctors consulted with the best. With the information I gathered, I understand the whats, whys and what ifs, so I am confident going forward. Yes, I still worry about the what ifs - but as I said in another thread I used to be a "can't do anything about it anyway, so why worry" kind of person. However with this, I find that understanding what might happen and knowing what you would do about it, greatly lessens the intensity of the worry.

[Chris'Mom]

I agree with Bill ....knowledge is power...when Chris was diagnosed...I was on the internet that first night til 3am...and then I found this website...and learned so much...that is how I knew about Sloan...and Dr. Sheinfeld...and I felt empowered when the Dr.'s here in our town knew less than me about TC cancer...when we went to Sloan, we felt as though we had found the right place...Mary Ellen

[Fish]

Quantum:

Don't lament your curiosity too much. Knowledge is most definitely power. It might be easier in the short term to be that patient who takes no interest in their disease or treatment, but the outcome of that pathway can be tragic.

Dadmo, I'm very sorry to hear about your friend. I lost my mother to breast cancer when I was 16 because no one ever questioned the doctor's decisions or took time to learn about the disease.

When I was first diagnosed, I wanted to learn everything I could - good and bad about TC, and all the treatment options.

So Quantum, continue to question and question and question.

[dadmo]

Can we ever have enough information. When my son was diagnosed I got in the zone, I read everything and called everyone, I was even second guessing Sloan. My wife and son were certainly in "a" zone, but they were seeking wellness, and they could only do that because they knew I was taking care of the grunt work. In all honesty it's one of the things I'm most proud of.
At the same time Jason was diagnosed we had a very dear friend develop cancer, when she and her husband came over my first question was, "who is doing your research" they told me that they were leaving it up to the doctor. They just lived as if nothing was going on. Well, that didn't work and she will lose her battle. It may not have made a difference but two years ago our oncologist gave us the name of someone at Sloan who specialize in her particular form of cancer. They couldn’t be bothered making the trip into the city so they never met this specialist, about six months ago the team she was being treated by recommended that she visit a doctor at Sloan and sure enough it was the same name from two years earlier. Tragic just tragic. She waited so long that she has no shot at a cure.

[rjs]

You are right that there is a good amount of angst when the decision on follow-up treatment is left up to you. It does seem that there would be some amount of calm if the choices were more clear cut. But, in the end, you should find comfort in knowing that which ever path you choose, they all lead to the same destination - a cure! Oh sure, there are things to consider, but the good news is that everything is working in your favor. Continue to educate yourself, ask lots of questions, re-ask questions if you don't understand, want to hear it again, or forget...then make the decision that works best for YOU. It's your body, your life, and your journey!

Hang in there and continue to be strong.

-rs

[Sans rt1]

Quantum - -

Information is good when it comes to these decisions. However when there are multiple good choices, each with in many ways equal and offsetting pros and cons, it is confusing. I stated before that I wish that my oncologist would have just come out and told me what he actually recommended. Instead, he presented the pros and cons, focusing on the cons of each, and told me it was my decision. I did not find that too helpful, as I could have told him the same based on my reading to prepare for out meeting.

I agree with Iowa's comment that when you make your decision, go forward and don't second-guess. Good luck to you and keep us informed.

[IowaBrian]

The only thing I can tell you is once you decide just go with it as a good choice don't second guess yourself all the time the doctors will back you up as long as your choice is a good sound one and in your case all of your choices are good ones. What I am trying to say is everyone will back you up no matter what and we will be here to support you no matter what. Once you decide your life will start to get back to close to normal meaning you will worry more about work, bills and keeping people happy more then worrying about cancer . Good luck
Brian

[QuantumSheep]

Hi everyone, thanks so much for the responses. I'm in the process of getting an appointment to Sloan-Kettering as my 2nd opinion, so that will inevitably make me feel a bit more at ease. Maybe. Possibly. I'm reading on TCRC that Sloan-Kettering is a proponent of the 4xEP method of chemo as well (rather than 3xBEP) and being a musician, the neuropathy/hearing loss are of vital concern to me.

Regarding R/T, if they just do the para-aortic radiation field (minus the "dogleg"), that might make me feel a little warmer toward the R/T. I'll have to ask about that when I have my appointment. So far, however, I'm still leaning toward surveillance based on what Dr. Einhorn wrote to me.

You know, I'm getting pretty jealous of the type of cancer patient who basically just says "tell me where and when to show up" and doesn't even try to learn about the disease OR the treatment!! Does anyone else ever feel this way? Of course, I know it's much much better to be informed but given how much there is to learn and ponder and agonize over, I find myself lamenting my curiosity from time to time!!

[Chris'Mom]

My son Chris had four rounds of chemo, and we were so nervous about neuropathy, Chris is a Music Major going for Music Education and plays piano and guitar, and is in two different bands in school as well as here at home that he plays with......and we lucked out...Chris had no ringing in the ears, never even a tinge of tingliing in hands or feet...so not everyone reacts the same way....he is out of chemo over a year, a senior in college and playing his heart out at school once again....hope that gives you another perspective.......Mary Ellen

[Rory (UAE)]

Hi,

Only joined today and just read your thoughts. You are almost a mirror image of me. I had Seminoma St 1 in the right fellow and the op back in March 04. I then had R/T targeting the lymph nodes and all went well until Oct 05 (18 months ish) when my markers went up (bHCG at 200). In Nov 05 started 4 rds of EP which finished in Jan 06. So what am I trying to say? Having Radio now will not mean you will be in the clear later (look at me) and doing surv will not mean that you just sit there waiting for it to come back. It may not help you in your decision but I was lucky enough to have two children before this all started. However, before Chemo I went to a sperm bank and I still had some little fellows swimming down there (I did not use a clam for my R/T ) and managed to bank a useable sample .

I know that may not help but good luck with the decision.

[Scott]

...in the case of recurrance, regardless of whether I opt for RT or surveillance, is carboplatin still an option? Or by that point is it a whole different ballgame?

To my knowledge, carboplatin is not an option in case of recurrence. If you start with surveillance and relapse, radiation therapy or standard chemotherapy (3xBEP or 4xEP) may apply depending on the degree and location of spread. If you start with radiation therapy and relapse, standard chemotherapy would apply.

[dadmo]

stevenh77:
Neuropathy is certainly a concern. Most people do not have a problem but for some it's horrible. Pins and needles in the hands and feet, cold sensitivity and ringing in the ears. This is something your oncologist should monitor very closely. My only first hand knowledge about what happens during treatment is with my son and he was asked about this a lot. Typically the week after treatment he would have some ear ringing and it would only last a few days. I’m sure others who, unfortunately, have first hand knowledge will jump in and discuss this more. Don suffers terribly from this, but then again his treatment was very severe.

[QuantumSheep]

Single-dose carboplatin is adjuvant treatment for stage I seminoma only.

Hey Scott, let me ask you -- or anyone else on here for that matter -- in the case of recurrance, regardless of whether I opt for RT or surveillance, is carboplatin still an option? Or by that point is it a whole different ballgame?

I'm still trying to wrap my head around the fact that Dr. Einhorn now recommends surveillance for all his stage I seminoma patients and in the case of RT, favors the para-aortic region only as opposed to para-aortic plus pelvic nodes.

The fact that there technically isn't a "wrong" decision at this point is comforting since the cure rates are equal (with additional therapy as needed), but at the same time it makes that decision an even harder one to make ... !

[stevenh77]

If in the future you do need treatment it is quite possible that chemo could be a component. With you being a musician the neuropathy might be a concern.

I haven't heard that one before. I'll be starting chemotherapy for nonseminoma (embryonal/yolk sac) soon. I play guitar and can't imagine giving it up, I also type about 87 wpm which is a skill I really need in the workplace. Is neropathy something I should be concerned with?