Does anyone understand?
Not for one moment do I think that women should not have the option of a prophylactic mastectomy and I think it has been a hard won battle to convince surgeons that this the right decision for some wo...
Forum Discussion
Dear Deane,
One vital issue that bothers me about the information given to women choosing between a lumpectomy and a mastectomy is that we are told that both have the same outcomes in survival rate. But only a few sites, like the Susan Love cancer page, will tell us that part of the deal with the lumpectomy option is that you almost always have to have radiotherapy (unless it is under .5cm, or for certain less-common breastcancers) And the other part of the deal with lumpectomy option is that even with radiotherapy, there is an important increased risk of local or regional recurrence with lumpectomy that does not exist with the unilateral mastectomy option. But these are generally picked up in the 3monthly checks by surgeon or oncologist, or in the annual breast ultrasound and mammogram before they develop too far, and are quickly treated with further surgery (generally a mastectomy because the radiation cannot be repeated so you cannot have a second surgery plus radiotherapy on the same breast as your first one) and/or chemotherapy/hormone therapy/targetted therapy. So the lumpectomy option is: definitely have the lump removed, may need a second surgery if the margins are too close, definitely need radiotherapy, and significant risk of further round of treatment including mastectomy if a local recurrence happens.
My concern is the distress and most of all the loss of hope that hits the women who find themselves having to have a second round of surgery and treatment because they have had one of these local recurrences after lumpectomy and radiotherapy and maybe chemotherapy. In fact, they really are not on a downward path anymore than anyone else who has had BC and currently no evidence of metastases.
But they do not realised that this is a factored-in risk, and that they just got unlucky, and ended up back having a bit extra treatment for their primary breast cancer.It feels like they have had to go back into hell and are once again confronting their own deaths. And the second time round is harder to dismiss.
I wish there was some way to get this info out there. The three women I have met in this situation were all angry, despairing and believed they would have cancer to deal with for all the rest of their lives. And it was not any more true for them than for all of us post initial diagnosis of BC