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Chemo after surgery?

E.S's picture
E.S
Posts: 12
Joined: Sep 2011

Hi Everyone,

I had my surgery about 2 months ago and have been told that they have removed the tumour and I had clear margins. I now have been referred to and seen an oncologist and have been told that I will need to undergo chemotherapy. I was not expecting this at all. I assumed after the surgery it would be the end of it. The Dr's told me that because I am so young and the circumstances are so unlikely that the cancer must have been aggressive. The chemotherapy will help prevent any growth of any bits that could possibly be left in my body. I am really scared and don't know what to expect. I was just wondering if anyone else has experienced this? And if you have, what were some of the side effects? Thanks :)

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

I would recommend that you join KIDNEY-ONC@LISTSERV.ACOR.ORG - this is an email support website of people who have undergone or are undergoing advanced treatment for their RCC. Some have had recurrances, others, like you, are doing it to prevent recurrance. This group is highly knowledgable about current treatments, possible side effects, latest and greatest advances. The Kidney-Onc Listserv,has over 1500 'members' who all have a connection with kidney cancer, either as patient or carer giver, family or friend..

This is probably the greatest source of information about Kidney Cancer that can be found anywhere. An email to the list can receive an almost instantaneous reply, from someone who is talking from their own experience.

Members are from all over the world, but most are from the United States, To join the list,just go to
http://listserv.acor.org/SCRIPTS/WA-ACOR.EXE?SUBED1=kidney-onc&A=1

Good luck to you.

BG
Posts: 85
Joined: Jun 2011

I totally agree with Ibinmsp ! I've joined the list to help educate myself.

BG

lbinmsp's picture
lbinmsp
Posts: 266
Joined: Jun 2006

I think your doctors are being very wise in suggesting more treatment. You are very young - and if some additional treatment will KEEP you cancer free, it's worth it! I was much older when my RCC was discovered - and, according to all the experts and literature - it shouldn't have come back - but it did. Perhaps had my docs been more aggressive immediately following my radical nephrectomy - who knows. I'm not into 'hind-sight' or 'what ifs' - but for you? I think I'd seriously consider it.

Good luck to you - and please stop back here periodically to let us know how you're doing - and what your decisions have been.

myboys2's picture
myboys2
Posts: 50
Joined: Nov 2011

I am unsure about treatment or not because you are young. RCC shows it's face more often then not again at some later date unfortunately. Traditional chemo does not work but the drugs for RCC are labeled as such. You were very fortunate to have caught it early. At least commit to have scans done every 3 months for the first year. Watching is so important. We were not so lucky to catch it as early as you will see below with our bio but we have no lymph, lung or brain so that is a huge plus.

Gail mother of Cody 21
diagnosis 8/10 unclassified RCC
8/16 checked into NYU as emergency surgeon concerned head tumor was closing ventricle to brain
8/17 embolization via femoral artery to bone lesion on skull 7 hours
8/18 repeat
8/19 10.5 hour surgery to remove skull mass (about 45% right skull)
9/4 titanium skull inserted
9/29 begin sutent 25mg 2 weeks on one week off; then 37.5 2 weeks on 1 week off; then 50mg for 3 weeks then off 5 days (preop tests show 3 tiny liver lesions shrinking) Also Denosumub injection. No lymph or lung
11/16 full neph of lft kidney 5.5 tumor (started at 6cm but sutent was working!!)
12/1 begin sutent again at 37.5 to work into it
12/8 sutent to 50mg for a week then off a week and continue cycle of 50 2 weeks on 1 week off until next scans
12/12 began radiation of remaining skull mets Monday and Thursday for 3 weeks high dose (already noted necrosis of tumor after one dose)

myboys2's picture
myboys2
Posts: 50
Joined: Nov 2011

Sorry hit enter twice.

Minnesota Girl's picture
Minnesota Girl
Posts: 115
Joined: Jul 2011

Do you have your pathology report? What does it say?

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

I agree that chemo follow-up is NOT common for kidney cancer unless it has obviously spread someplace else. In that case, drugs like sutent have a 50/50 chance of helping. But as I understand it, that's for a tumor that has already metastasized. You would know if that were the case.

What was the size of your original tumor? Whether or not metastasis is even likely, depends on the size of the original tumor.

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