Help Questions Please

[Chris'Mom]

Hi all, could really use your input...drove out with Chris to Sloan Kettering yesterday for a ten hr trip...for Chris' follow up after RPLND nine months ago.....just kind of brought it all back to see other other guys there.....anyway, good news was no more cat scans since Chris had a clear one....just blood and chest....but I was very confused...Dr. Sheinfelds nurse said just "just continue to see Chris' Dr. every month like you have been doing to have him always feel for lymph nodes around neck"...I was stunned...I thought I was so vigilant about getting info on follow up...Chris has just been getting blood work at school and chest..then he leaves and the results are faxed to Sloan, never did anyone tell us he should also be seeing oncologist every month...how did I miss that...do you all see Dr. every month when you give blood....????? and I was also surprised about no more cat scans....any input would help...I am a little confused...tired from trip and just plain down with the whole thing...the Fellow of Dr. S also said Chris would also always have to watch cholesterol because cicplatin can hurt the heart......another thing I guess I missed...thanks for listening....Mary Ellen

[dadmo]

Mary Ellen:
The cisplaten leaches the magnesium out of muscles. Perhaps Chris should take a supplement. Jason has never had to go for any form of follow up on a monthly basis. His first year was every other month. As far as the blood work, if they say hello to Jason they stab him. We are 2 years from the original diagnosis and Jason will be making 4 visits to the doc this year, hopefully he will be getting only 2 scans. Jason has lung spot that they are watching so that may be why he gets scanned all the time. We were never told to watch the lymph nodes in the neck, that’s odd to me. I don’t want you to flip but Nancy is doing something for the leukemia society and they said that the neck is where you check for leukemia.

[huckchef]

mary ellen, for myself i was seeing the onco every month after my initial surgery. blood work every month and she would go over my scans and x-rays with me. she did listen to my lungs and prod around on my neck and stomach for lymph node enlargement. of course since i'm getting further out the less frequent the visits. i'm sure that since his blood work has been normal there hasnt been that much missed. i know these follow ups are important as far as labs and scans but i dont think the doctor would know anything outside of those being done! just my thoughts and continued success. my thoughts and prayers, brian!

[Scott]

That follow-up does seem a little strict. The TCRC site has information about usual post-chemotherapy surveillance on this page.

The same page also recommends that "an exam of the neck be done to assess for lymph nodes (especially supraclavicular nodes), palpation of the male breasts be performed to rule out gynecomastia, examination of the orchiectomy and other surgical scars should be done and, especially, a thorough examination of the remaining testis should be performed. This also gives the opportunity to query the patient regarding symptoms like sexual function, back pain, shortness of breath, fatigue, social function and other issues that may impact on survivorship. The exam obviously would be expanded if new symptoms are reported."

[Kim]

Hello Chris' Mom, I am a wife of a testicular cancer survivor and an oncology nurse. We have had to see our oncologist every month for the first 6 months, every other for a year and a half and starting now - every three months. We just reached our 2 year mark. The chemotherapy can sometimes make you more prone to developing lymphoma and other types of cancers later. And the lymph nodes are a popular place for the cancer to spread. So, that is the reason for checking the nodes. It is just a standard precaution. The chest x-rays and labs correspond with the visits and the CT scans are every 6 months for us. You are doing great. It sounds like it was a lack of communication between your doctors. Don't beat yourself up about it.

[jdunn]

Hi MaryEllen,
Josh has been seeing his oncon doc every 3 mos. with blood work every 3 mos. chest x-ray done last month with CT scans every 6 mos. He sees his doctor today for his 3 month. Waiting on results for blood work yesterday. I'm anxious to say the least.
I too was never told to check the neck area. As for the cisplaten, that's news to me also. ?????
Jane

[Chris'Mom]

Thanks all...and thanks Kim for the encouragement..I needed that today....I think there also may be some confusion because of the following...after the RPLND, we could not do our follow up with Chris' oncologist at Sloan because she was on maternity leave, so Dr. Sheinfeld said to do it with his office. and now I am wondering if that is where the different protocols I am hearing hear may be from...so I have a call in to Dr. Kundagunta''s office..the oncologist, and I want some answers from their side...Chris was told he was a good cure candidate...AFP 84, only in lower ab....not in lungs, yet he seems to be having more followup than most...I think I want followup with onco at Sloan, not surgeon, (who I think is the best), so I will let you know...thanks for Help...Mary Ellen

[Chris'Mom]

Jane, I just saw your post...I know the bloodwork for Josh will be fine...the confusion with Chris may also be that his local oncol is here...and he is getting tests up at college...so we don't see him, that would be a two hr ride for Chris every month...so I have to get this straightened out...and yes, I was never told about the heart deal...what a day yesterday was...take care Jane...Mary Ellen

[jdunn]

Thanks Mary Ellen for the encouragement. I sure helps!
Have a great weekend.
jane

[Mom]

When my husband's fraternity brother had a reoccurrence, it showed up as a swollen lymph node in his neck. I do not know whether he had a seminoma or a non-seminoma. BTW, he is doing fine and it has been 30 years for him. Since Jeff's one year post chemo anniversary, he has CT scans 2x a year and blood work every three months. He did not have a RPLND. I don't understand the no CT scans unless because he had the RPLND, there is nothing to see and they figure the chest X-ray will pick up anything in the lungs. I know, MaryEllen, it never gets easy. Dianne

[Chris'Mom]

Hi Diannne, thanks for input...yes, because Dr. Sheinfeld did RPLND, and it was clear ....no need for another cat scan.....I just got off phone with Sloan, and they said that in August Chris could go for chest and blood work every other month...but was kind of made to feel bad that I was not having him see an oncologist every month...so right now I am in tears at my desk...but I truly never knew that...so from now on I am having the local oncol do followup questions with oncologist at Sloan...just having a really bad day...thanks Mary Ellen

[huckchef]

i know its tough on you! you don't know how great it is to hear someone take care of their loved ones like your doing. your son is really blessed to have you at his side. this will make him stronger in many ways you never thought possible! he will one day look back on this and it will be love and kindness he can pass on for generations to come! your are truly what being a mom is all about!!! hang in there and try to take a really big deep breath and relax this weekend. you desreve it! many thoughts and prayers, brian.

[dadmo]

love and kindness he can pass on for generations to come

Isn't this really all we can ever hope for?

[Individuation]

The chemotherapy can sometimes make you more prone to developing lymphoma and other types of cancers later.

Just as a note on this, cause it totally freaked me out when my boyfriend's doctor told him this -- My best friend, who is a doctor, looked up the stats and it was like .5% chance.

[huckchef]

i'm thankful each day that my passage through this was an "easy" one compared to others. i really am thankful for that. as we expect our first child, as a man i believe we always would like to have little boys. with this little girl on the way i believe it was Gods way of not putting us through this again with the chances familial cancers. but i will love her with every ounce i have. its just great to see the love in these parents because there are so many out there who dont care!! thanks