Yes, I understand the confusion you must feel, after getting conflicting recommendations in regard to the need for this surgery. (And what I meant by "risky" was exactly what you fear--damage to the bowel that might require a "bag.")
Would it be possible under your medical system to have a 2nd opinion consult with another oncologist for help in deciding whether this surgery is indicated?
(I don't understand how your current oncologist can be so insistent that it is needed, when it is not even known if you even have a deleterious variation in the first place!)
Sorry we don't have any answers to your dilemma, but know that you are in our thoughts and prayers.
bb
BB
What you just stated is exactly what my results indicate. They don't know which of the two I have - if it is a deleterious change or a variant. Apparently Cancer Genetics will be forwarding the results to the lab again to see if there is any update on my status. I was told when I rec'd my results a year ago that I should be making contact with them on a regular basis to determine if there is any news with the type of "variant of uncertain significance" that was identified.
At the end of the day its really not the surgery that scares me, but the risk it poses with respect to my bowels due to the scar tissue left behind when my appendix was removed 40 years ago in Italy. As a result bowels/ovaries all seem to be fused together, and there is a risk of perforating the bowels if this surgery was done (resulting in having a "bag"). The gyn said that he would need to have another dr assist and that they would have to remove and shave the bowles/ovaries in order to proceed with the surgery. He felt it was an extremely risky surgery and did not recommend it. The tamoxifen would take care of the problem according to him Now I am being told otherwise.
Anyways, you are all such a wealth of knowledge, I really can't tell you how grateful I am to have come in contact with such wonderful supportive people. There have been many days, where I have felt so alone, depressed and devasted with all that has happened to me. It is this site and all you wonderful ladies that bring me back up.
Thank you......
Warm regards
Tina
You are certainly welcome.
The part that I found most interesting was, "Some people receive a BRCA test result called a 'variant of uncertain significance.' This means that, at the time of testing, the laboratory cannot determine whether the gene change is a 'deleterious change,' which increases the risk for cancer, or a variant which does not increase cancer risk."
It would be a shame for you to be put through a major and risky surgery, if your variation is not even of the deleterious type. :-(
Hope you will receive information which will help you make this difficult decision.
Best wishes,
bb
Thank you both so much for your warm wishes. BB the site that you recommended is absolutely phenominal. So informative. Thank you, thank you. I am awaiting a call back from the cancer genetics within two weeks or so, and will see the gyn again at the end of Aug... so I will keep you posted with the outcome.
Bless you.
Tina
Hi Tina,
I also remember you very well and I am happy to know that you are doing well under the circumstances
I really have nothing to add on bb's excellent suggestion and the informative link she has kindly provided for you.
I just wanted to thank you for updating us and to wish you the very best and continuing good health.! :)
Hi again,
Here is a link to a discussion of BRCA testing.For info related to your situation, click on the section "Variants of uncertain significance."
http://www.facingourrisk.org/info_research/hereditary-cancer/genetic-testing/index.php
bb
Yes, I remember you well! So nice to hear from you again.
I'm glad to hear you are doing okay following your bilateal mx, and are now lowering your risk with tamoxifen.
I'm not sure anyone here will know much about unclassified gene variants in BRCA1 and BRCA2 mutatation testing, since we deal primary with BC and not genetics. I would suggest continuing to try to get information and recommendations from the genetic counselor and oncologist. (There is also a MH Expert Forum for Genetic Disorders where you could post a question, but I don't know whether this issue would be covered there.)
That said, personally, I would be concerned about the risk/benefit ratio of undergoing such a large and risky surgery...
Please keep us updated about your situation--we care!
Warmest regards,
bluebutterfly