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owl_tn
Fresh Boarder
Posts: 7
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My wife recently finished chemo, and is about to start radiation. Her oncologist originally said that she shouldn`t get a mastectomy; now, the doctor says that she should get genetic testing performed, and would recommend a double mastectomy if the result comes back positive. Unfortunately, it seems, her doctor didn`t listen very carefully when we explained my wife`s family history the first time, months ago. Her dad died of colon cancer, and many people on her dad`s side of the family have had breast and/or colon cancer. We recently revisited this with the doctor, who then recommended the genetic testing.
Anyway. This could (and should) have been done months ago. But, its just been ordered now. The results won`t come back for at least 3 weeks, maybe longer. My wife needs to decide whether to wait for the results - and then proceed with either mastectomy or radiation - or go ahead and have radiation now, followed by mastectomy if the test result is positive.
Is there any problem with having radiation now, followed by mastectomy later? We`re hesitant to delay therapy to wait for the results - her tumor was 3.4cm and very aggressive (grade 3, Ki67 = 92%), but fortunately node-free and no signs of vascular invasion.
Another thing is that, in my opinion, she should have a double mastectomy no matter what - because, due to family history, it most likely IS genetic, even if this particular test comes back negative.
Thanks for any comments or suggestions.
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Boxing is a lot of white men watching two black men beat each other up.
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AngelVS20
Senior Boarder
Posts: 48
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Hi Mike, I am in agreement with you that treatment of at least some sort be started. She is very fortunate that it was node-negative--at least in the nodes that were tested. Latest findings suggest that internal mammary nodes, which are not tested, may be positive in a certain %age of those with b.c. You write <>
How does your wife feel about that? If both are in agreement, it is something to consider. I felt very strongly about having a bilateral because of my horrific family of b.c. on both sides. My husband had no problems with it. I did have genetic testing but it would have been awhile before I could have gotten the results back. Even so, I wanted the bilateral because of the above and because I had invasive lobular--the type most likely to recur on the other side. I have no regrets. I did want immediate reconstruction but that was denied for `wrong` reasons, although I am not at all sorry that I didn`t have it. The new prostheses are great---and even feel and look natural in a regular bra. The results of the genetic testing was negative for the KNOWN but all my dr.s (as well as my husband and I) believe that there was most definately something going on family-related--there were too many close relatives who died from b.c. at a young age starting at age 28 (age of death, not when she got it which, obviously, isn`t known). I saw a total of 4 surgeons for 2nd opinions--2 private and 2 within our HMO. Only 1questioned the bilateral--commented why remove a healthy breast and also thought that if it were to metastasize that it would be better for there to be a breast for it to go to. That is just one `new` but not validated theory. I also talked with two friends who had had single mastectomies without reconstruction. Both reported back related difficulties because of the assymetry. It has been almost 28 mos. since the surgery. I have no regrets. I do hope it was caught in time since I did have positive nodes and lymphovascular invasion. The only thing I might have done differently since dx was maybe start chemo before the surgery, but then again, my surgeon still feels it`s best to do surgery first. However, I wish I had had the surgery at the same time as the biopsy--since that never healed--and it was 23 days after that until the surgery.
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Ability is nothing without opportunity.
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owl_tn
Fresh Boarder
Posts: 7
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Thanks for the comments, and especially for pointing out about those internal mammary nodes. She has gone ahead and started radiation. The oncologist thought she should wait for the genetic test results, but even when the results come back in 3 weeks, we would still have to schedule surgery, which may add another 3 weeks to the wait. Not to mention it has already been 3 weeks since my wife`s last chemo. All together, the wait might have been more than 2 months. (Of course, we`re still irritated that the oncologist didn`t order the genetic testing months ago, when we requested it. The doctor sort of dismissed the idea at first, because the cancer relationships were paternal instead of maternal.)
My wife is in favor of having the prophylactic mastectomy, and I am in complete agreement. Even if the genetic tests come back negative, that doesn`t mean that the cancer tendency wasn`t inherited, as you point out in your own case. The tests can only report on what they are specifically looking for. So, she will probably have the double mastectomy sometime after the radiation is finished.
Thanks again, take care,
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Boxing is a lot of white men watching two black men beat each other up.
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AngelVS20
Senior Boarder
Posts: 48
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<< Of course, we`re still irritated that the oncologist didn`t order the genetic testing months ago, when we requested it. The doctor sort of dismissed the idea at first, because the cancer relationships were paternal instead of maternal >> ??? There is just as much a risk if the relationship paternal as if it were maternal. Although I had it on both sides, my paternal first cousin was recently dx`d with b.c. She has no hx of b.c. or as far as she knows any type of cancer on her mother`s side. Our grandmother died of b.c. in her 40`s. Our uncle died of melanoma. Her father, my paternal (blood-related) uncle had colon cancer from which he was `cured` in his 30`s and then developed non-Hodgkins lymphoma in his 70`s. In my case, I have an even greater negative hx on my mom`s side with two of her first cousins dying at very young ages (28 and 31) from breast cancer and the rest getting it at age 50 or younger. It sounds like you are both feel the same which helps emotionally. I can also understand the rationale for doing radiation now, too. However, you may have to wait longer for surgery because of healing related difficulties/risks from the radiation. Take care and all the best!
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Ability is nothing without opportunity.
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wmaster
Fresh Boarder
Posts: 8
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Hi mike, 2 years ago I had Lumpenectomy on left breast followed by 6 weeks radiotherapy , then had agressive cancer in right breast so had mastectomy ,surgeon suggested also taking left breast as possible for cancer to return , had Mastectomy in May this year so far have had no trouble. The only concern I have is that dr. had to take a lot more of the chest wall, as radiation had caused a massive hard lump that they called an orange because that`s what it looked like. hope all goes well Good luck Balsey
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There are people who put their dreams in a little box and say, Yes, I've got dreams, of course I've got dreams. Then they put the box away and bring it out once in awhile to look in it, and yep, they're still there.
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