I have been reading the posts from this forum and am really confused. I just finished A/C and taxol and 35 rads. My onc says no follow-up scans or blood tests are needed (besides a mammogram in Feb). He says the only reason to do any tests, more than once a year, is if I have unusual symptoms that last for more than 2 weeks. He says that finding something very early on does not change the overall prognosis and people just get worried unnecessarily with tumor markers, scans and blood tests. And that there is no other chemo for TNBC than what I had. I am triple negative and was stage 3B. But I read here about how the doctors are doing all these tests so treatment can be started early. I thought I was comfortable with just waiting for symptoms but now I'm not so sure.
So I am still confused:)
Blessings, Roxanne
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So Confused
- By harpangel36
- Posted October 31, 2009 at 2:50 pm · 6 replies
- In Living with cancer
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- By chainsawz
- Posted October 31, 2009 at 3:13 pm
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All this information is definitely confusing :> Most of us on this site are stage IV, so our treatment protocols are much different. The "horse is out of the barn" is the weirdest analogy I hear from doctors. Many of us have scans every 2-3 months to monitor our mets. I have probably had over 25 scans of one type or another in the last year. This is definitely not something to do anyone who is not stage IV :>
I know there are other members on here who are also stage 3, and maybe they can post their protocols so you can see if they are told the same thing? Best to you!! lisa
- By R
- Posted October 31, 2009 at 4:16 pm
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Part of the issue is the radiation from the scans. My onc does not do follow up scans on those that are not stage IV primarily for that reason.
A friend who was diagnosed at the same time and in chemo with me (where we met) really gets frustrated with it. You go from seeing the docs every few weeks and then to nothing.
But the scans have their own issues with kidney and liver issues with the contrast dye and each scan is 100 x rays worth of radiation. the buildup not seen as a big issue for those that are Stage IV because, very frankly, the disease will likely get us before the radiation build up does. Not the issue for those without mets.
- By ccarter48818
- Posted October 31, 2009 at 7:41 pm
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I would think that blood work should be done at least.
Carla
- By Natada
- Posted November 1, 2009 at 11:40 am
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Hi,
I was stage 3C for 10 years before a metastasis developed. I had CT/Bone before chemo and one after the end of chemo. Both the oncologists that I saw did not believe in monitoring tumor markers. These oncs are highly respected and are at Comprehensive Cancer Centers. Their experience led them to believe that most women catch their own mets. However, they did tumor marker testing after a stage IV diganoses. I did have routine blood work done every 3 months for the first 2 years, that blood work included bone and liver enzymes. I would wait for 2 weeks when I had a new symptom before I hit the panic button. \
By the way my metastasis developed in my ovary and was caught by my gyn, by ultrasound that was done for routine ovarian CA test.
- By soccermom1962
- Posted November 3, 2009 at 12:19 pm
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I am stage IIIB, I am stage I, I am stage 0 with the tumor wrapped up in the muscle surrounding and on the chest wall. I am HER2+, I am TNBC, I have a mutated BRACA 1 gene. Axilary left side 7/30 lymph nodes. Cancer 2006, 2008, 2009. Cancer after chemo and radiation, masectomy and 6 other surgeries for reconstruction and oopherectomy (sister diagnosed 2 month before my first diagnoses with ovarian cancer). I am watched very closely since the first cancer I have had my follow up visits with oncologist, surgeon, radiologist all set up so that I was seeing someone at least every three months, it is necessary on so many levels. You are not stage IV you have TNBC a very aggressive breast cancer. If something gets by you can rapidly end up stage IV. You are at a high risk for recurrance. Schedule your own appointments at least every 6 months. You may not ever "recur" but better to err on the side of caution. Best wishes and Good luck. Parp is coming it could evolve to help the majority of us.
- By JillAline
- Posted November 3, 2009 at 6:56 pm
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I have Stage IV TNBC. I had ACT five years ago, and now I'm receiving Abraxane, Avastin, and Zometa. I think your oncologist needs to do a little more studying about the options for triple negative breast cancer. I suggest you seek a second opinion.
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