An agonizing decision

[QuantumSheep]

Hi everyone!

I had my first consultation with the radiologist yesterday and to my surprise he was very receptive to all options (I assumed he'd strongly push for RT) ... he spent about an hour and 15 minutes with me, answered all my questions, and was quite impressed with the knowledge I've built up so far!

The downside of that meeting is that I came away even more overwhelmed about the decision to use RT or Surveillance. The thing is, I had a T2 tumor with vascular invasion, which led me to believe that RT was the only "real" choice. I said, "I guess that not a lot of people with vascular invasion go on to choose surveillance as a course of action" and he told me that in fact, it's become quite common, and a colleague of his in a more advanced stage than me had opted for it himself.

I'm not worried about the short-term effects; it's the long-term ones that concern me. I'd have the typical para-aortic region done. The problem is that I've already had skin cancer in 2002 and the possibility that I'd have complications down the road is greatly increased. He also seemed to believe that infertility is more like a probability than a possibility, even with the use of the clamshell shield. (Does anyone know the stats on this?) My task today is to start scheduling a few visits at Ye Olde Sperme Banke.

Of course, I flip between these two choices about 4000 times a day. I just can't seem to in good faith choose RT knowing that there's a chance that I have no cancer anywhere in my body. (By the way, my pre-op CAT scan came back as clear as a CAT scan can be, and my AFP/HCG are both normal (2.0 and 3.4, respectively) -- which of course doesn't mean a whole lot seeing as it is a pure seminoma. Regardless, I'm starting to feel that this (surveillance) might be a risk worth taking for me.

I'm also fully aware of the emotional roller-coaster that is surveillance and the tendency to beat oneself up if recurrence should happen (the "why didn't I just take care of it then" syndrome).

I'm not looking for anyone to make this decision for me, but I guess I'm just looking for feedback or thoughts or your own personal experiences. I'll tell you one thing: Whichever path I choose, I'm going to go down it not with a HOPE, but with a KNOWING that I will be 100% healthy, happy and cancer-free. My optimism has been known to be through the roof and I'm not going to let it be anything else even under these circumstances. If there is any cancer even left in my body at this point, I fully intend to kick its seminomatous little a**.

Have a fantastic day!

[IowaBrian]

Welcome
Didn't see your post or I would have responded before now
Surveillance is always a option in your case like mine we are 50 -50 chance of being done with treatment or 50 -50 that we will need more.
Like you posted it is tough I did a bunch of reading and it was the choice for me I always have chemo to fall back on.
I think if I were in your shoes I would do the RT to me it isn't as bad as the chemo I just hate thinking about doing the BEP 9 week thing and wish I could have just had the RT and been done with it... I don't know they both don't sound like much fun would rather not have to worry about it but that wasn't to be. If you have any other questions ask away many good post to read here that should give you a lot of good information.
Brian

[Sans rt1]

Wow. I am amazed you got that kind of a discussion from a radiation oncologist. My case was very similar to yours, pT2 with 4.2 cm and invaision. When I met with the RT doctor, he told me that of course I will do the RT as it is the most reasonable course of action at my staging. Later that week I met with the medical oncologist (who I would later learn will be my doctor going forward from here) and he gave me all of the options and seemed to be pushing me towards single dose chemo.

I had the RT, and hopefully all that is behind me now. At my first follow-up, my oncologist told me that he was glad I went with the RT because he felt it was indeed the most reasonable choice considering my stage, etc., Boy, I wish he would have just come out and told me that in plain English when we first consulted.

For me, I think I made the right decision with RT - I would have been a basket case with "watchful waiting". But for some it makes sense as you don't get treatment if you don't need it, but you do have more frequent followups with CT's, so you still get a fair share of radiation (I have never compared the two, however). From what I read the single dose has some risks plus it lacks long term experience (but the para-aortic RT is also fairly recent). I did not consult with the dermo, as my radiation patterm missed all of my spots - although I guess scatter is still a concern. I was not concerned about preserving fertility as I already had a vasectomy to take care of that one.

You have 3 really good choices - each with its own risks and benefits. If your decision is based on the skin cancer risk, perhaps you should consult with your dermatologist and see if he has any thoughts on the matter. Sounds like you have already taken things into your own hands (pun not intended) with regards to the possibility of infertility.

I wish you luck with your decision. Rest assured that they are all reasonable choices - and in the end your chance of a full cure is pretty much certain.

[dadmo]

Quantum:
Let’s take a look at this from a different angle. 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. If the chemo you get is BEP you may also lose some lung function, I don’t know if that would affect your singing. If you get treated now the RT shouldn’t cause either of these problems.
Sorry for adding to the confusion but you may want to discuss these issues with your oncologist.

[Scott]

It is a tough decision, but once you've made it, try not to second guess whether it was right or wrong and just be glad you're back on track. The best news is that whichever choice you make, life will go on.

[QuantumSheep]

Hi all, your thoughts and replies are most appreciated.

Speaking of thoughts and replies, I emailed Dr. Einhorn yesterady after hearing so many people getting their treatment directly through him. And he emailed me back today -- something that really floored me. His response was also something I wasn't expecting:

"...the decision is all yours. We usually recommend surveillance. There is not a wrong decision between observation (studies done every 4 months for 2 years and then every 6 months years 3-5) versus radiotherapy, which when correctly given is in a dosage of 2,000 centigrays just to the nodes in the middle of the abdomen(para-aortic), not to the pelvic nodes (we don't use dogleg radition anymore) or a single dose of chemo with carboplatin. The cure rate with orchiectomy alone is 80%. It rises to 97-98% with radiation or chemo. The ultimate cure rate should eb 100% as all patients can be salvaged if needed with further therapy.There are pluses and minuses to all 3 approaches which are above and beyond what can be indirecly stated on an E-mail."

What is interesting here is the fact that he usually recommends surveillance rather than RT whereas most other people I talk to have RT recommended to them. The other difference between his treatment and that which I would be receiving is that he no longer uses the dogleg (hockey stick) radiation, which is what I am so far scheduled to receive next month. I also notice that he is an advocate of one-shot carboplatin for chemo whereas so many others on this site are recieving (or received) long treatments using BEP. Any thoughts on this?

I woke up today leaning more toward radiation where as yesterday I was leaning toward surveillance. And now this email has thrown me for a loop and back into 100% undecided mode! Hopefully I can begin to move toward a decision that I will feel very comfortable with. And don't worry Scott, I intend to pick a path and follow it 110% -- with no room for second guessing!!

I'm definitely going to talk with my dermatologist to see if he has any thoughts about this. (I've never had to deal with so many "-ist" doctors at one time before!) Skin cancer and infertility rank very high on the list of things I wish to avoid, although, at this point I'd have to say that testicular cancer itself tops that list!

[Scott]

I also notice that he is an advocate of one-shot carboplatin for chemo whereas so many others on this site are recieving (or received) long treatments using BEP. Any thoughts on this?

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

[DianeE]

Hi Quantum,

I think Dadmo made a great point about the possible effects of
chemo, if it's needed down the road.

My son opted to have two rounds of chemo after his RPLND,
even though he was technically still stage one, with only traces
of cancer in five of the nodes. (I think six is the magic number that
takes the patient to stage two) The oncologist at Hospital of
University of PA, Dr. Vaughn, told Brian he had a 50/50 chance of
a recurrence if he did nothing. He told him they would still cure him,
but he'd need four rounds of chemo instead of two. We'll never know
if he needed the chemo or not and it doesn't matter now. He
got through the two rounds and feels great now and has no
regrets about his decision.

The skin cancer fear you have is certainly understandable, but Dr.
Vaughn also told us that chemo patients are a bit more suseptible to
skin cancer than those who have never had chemo, so if you would
have to have chemo in the future, you'd still have that slightly higher
risk.

If it were my son and the path report showed vascular invasion, I think
I'd push him to get the treatment, now, rather than wait and see if
it's needed in the future.

What kind of music do you do? Have you ever checked out
Just Plain Folks, Muses Muse, Song, Tunesmith or any of the
other sites for songwriters?

Good Luck with whatever decision you make. The outcome will
be a cure no matter which path you chose to take.

Diane

[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?

[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 ... !

[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.

[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.

[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.

[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

[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!!