Congrats to all of you still on surveillance

[ndboondockid]

I don't mean the title of this thread sarcastically, I really do mean it. I found out last week that my surveillance is officially over for right now as I have recurred, at least we think so. In the past I have asked about PET being used in a surveillance capacity, and was told not to use it. Well I fixed that problem by switching oncologists. Well my first CT scan with my new oncologist showed a lymph node in the correct area, that is at 1 cm in size. My tumor markers where normal, but the problem is that this node coincides with a node that lit up on one of my previous PET scans with an SUV of 5.9. My new oncologist basically told me that I still have cancer and that it is time for chemo, so I have a couple of questions for everyone out there.

I have read all of the horror stories about chemo, so needless to say I am scared out of my mind, but I have also read about alot of those that don't have many complaints, so first question is: What is the general percentage of people that suffer from some of the nastier side affects, ringing in the ears, neuropathy, lung irritation? I can hear it from the doctors, but they really don't know from a patients perspective.

Next I was wondering about the costs of chemo. I have read that BEP treatments run anywhere from $28,000 to $35,000, not to mention the drugs, scans, blood work, and other crap that they put you through while you are going through this. What are the real numbers here, just needing an estimate? I know that I can probably get this from the business office, but I would like to go in there with a general idea about things.

My last question is about fertility. I am a 27 year father of one, with another one actually due in a month, but we aren't sure that we want to be done yet, so my question is (and I have looked all over the internet and not found anything) what percentage of men are able to reproduce after the affects of chemo wear off? We are probably going to bank sperm, but I would still just assume make it work the old fashioned way if possible.

I appreciate everyones comments and I wish the best of luck to those of you still on surveillance, wish I was still one of you.

IO August, 65% seminoma 35% mature teratoma, No VI, No LI, nothing in the surgical margin, tumor completely encapsulated, HCG 12, returned to normal within a week after IO, surveillance for 5 1/2 months, found enlarged lymph node looking at 3 BEP

[tonytigre]

Sorry to hear the news ndboondockid, but I know everything is going to be fine. We are all fighters and even though we all may take different routes on this journey, we will all reach the same destination "Being Cured". I will hit my 5 month surveillence mark in a week and I go in for a CAT SCAN on Valentines Day. I have 2 doctors on my surveillence team and will see the alternately, this way I have 2 sets of eyes looking over me. Do they know if the enlarged lymph node is seminoma or teratoma, or is it something completely different. I ask because I thought that seminoma and teratoma didn't respond to chemo, but I am not sure. Take Care

[Larry B.]

Other options?

ndboondockid, you said that your tumor markers all all normal. I really dont think a 1cm node is significant enough to go directly into Chemo. Have they disscusssed the posibility of RPLND surgery? You had Taratoma present in path report and that would not be responsive to chemo. It may be in your best interest to get a second opinion. Just my thoughts. As for the side effects of Chemo, they will vary from person to person. I was a lucky one. I have had none of the side effetcts you mentioned, only some scarring from a reaction to BLemycin. Good luck, and let us know the outcome.

[LindaM]

pet scan question

dkboondockid, you mentioned a node on your pet scan with a suv of 5.9. Would you mind me asking what exactly does that mean ??? Is that a measurement of some kind ??? This forum is so helpful to us all, because there is so much to learn from other people sharing their knowledge and experiences. Thank you and that was a very kind comment for those like my son danny, who is still under surveillance at Sloan. He has passed the 9 month mark the end of January and so far everything is looking good.

[ndboondockid]

response

As far as I know the seminoma component is very receptive to chemo, and I really do worry about the teratoma component, but will have to wait and see if that lymph node goes away. The reason for the chemo is because the PET scan showed an uptake, or a hot spot in the lymph node that was detected on the CT scan as well. I have been told that tumor markers are some times not present at all during cancer, so it is hard to base it off of that. As far as what SUV means it stands for (I think) Sugar uptake variance, not sure on the variance part. You see in a PET scan they inject you with radioactive glucose (sugar), you are then required to sit and do absolutely nothing for an hour, then they put you through a scanner, which looks alot like a CT scanner, which then reads where the sugar went. Cancer cells require alot of sugar is my understanding, so if the scan shows a concentrated spot of uptake or SUV of that glucose, then it is suspect for cancer. In my case since my previous PET scan showed some uptake, the CT scan basically confirms that there is something there. It was mentioned that this is possibly teratoma, which it could be, but teratoma usually doesn't show up on a PET scan, as teratoma is basically normal cells that are going a little bit crazy, so their uptake is usually like a normal cells uptake. These are the things that I have been told by my doctors, so I take no responsibility if they are incorrect. Just passing along what I have been told.

[ramfan13]

sorry to hear about recurrence

I am sorry that you may have to be going through chemo. I read your post with a lot of interest since I have been on surveillance since 8/05 IO which turned up Sertoli cell tumor. I have been having just PET scans for my surveillance since my Dr. likes these. I had a positive light up on a PET in 1/06 but then after a review by other doctors, they determined that it was just the ureter and not a lymph node. I have been uneasy since then wondering if I should have more testing. How soon after your PET did you get a CT. I am wondering if a CT would show anything more for me. I have also been having some pain in my right side (maybe in my head, I dont know). I dont have another PET until 4/06 and I still feel uneasy about that "false positive." I know all will go well for you. Keep us informed.