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That's such an interesting and true point, Andrea. It is crucial that we support ourselves and our decisions. Because, as you said, at the end of the day, we're the ones living with the choices we've made and it certainly helps to feel as good about them as we possibly can given the circumstances.
Hope your recovery is continuing to go well. Thanks for writing and stay in touch --
Laura
I, too, opted for a double mastectomy after diagnosis of stage0 DCIS in the right breast. I heard a lot of opposition which mostly died when the pathology report on the left breast showed a stage 1 in the left. I do wish that I had asked for an MRI of the second side. If the second cancer had been discovered, I might have had them check the sentinel nodes on the "clean" side.
Mary Koss
Beautifully put Laura, I think if you got more individual in a room together you would find out that the reason that we come to this decision is because we can't trust what we are being told.. the discussion between one breast surgeon and another, one oncologist and another one pcp and another - they all think they know but they are all contraditing themselves so we are left to make the difficult - no almost impossible - decision that amputation seem to work with so many other cancer perhaps we will be lucky and it will work for us too!
I'm sorry you too had to make such a horrendous choice!
Best
Deirdre
This is a beautiful piece and one I can completely appreciate! I too made the exact same choice of the bi-lateral mastectomy (with immediate reconstruction).. the only thing I see being left out of this article is the incredible confussion on the part of the doctors as they continue to treat patients. I went to 3 breast surgeons and their own confussion on how best to handle this situation was what helped me decide. If we as the patient are making the decision and the information coming from the medical establishment is, at best, mixed then I have to take matter into my own hands and frankly amputation is one of the only ways that cancer was removed 50 years ago and we have to ask how much farther has medicine come?
Also, my DCIS was found on an MRI that I had to pay for out of pocket and then push to get some payment from my medical insurance.. the medical system that we are suppose to trust is broken - I don't intend being a statistic while (medical areana) cleans up their act!
We have come a way in detection but when it comes to the treatment too many of my friends have died of this disease - I want to live and although I would have liked to live with my own breasts I'll take the next best thing!
I agree with Ms. Zigman's thoughtful decision. At this time I am faced with a similar circumstance. My left breast diagnosis (after biopsy and lumpectomy) is one of DCIS in multi-focal sites, with ADH and no clean margins. I am definitely having a mastectomy of the left breast and to quote Laura Zigman's article:
" As it turned out, that choice made the most medical sense, too. Because when the final pathology report came back a week after surgery, my surgeon called to tell me the results: there was DCIS is the "healthy" breast, too: DCIS that the MRI hadn't caught, even though it caught the DCIS in the left breast. "
I know removing the healthy breast is considered "agressive" - however, I also know I would regret not removing it in the years to come... and in Laura's case even sooner than that.
Thank you for sharing your experience. It is helpful to know that your intuition was correct. I am making the same decision now.
With a very long list of risk factors, once they found cancer, my breasts seemed like two bombs attached to my chest. I fully expect the pathology report from my double mastectomy to reveal more cancer, although none has been detected by any of the gross screening tools used today.
I have read soooo many stories and studies of undetected cancer found only through the micro examination of pathology, "recurrences" (as we learn while contemplating radiation treatment, which attempts to kill undetected cancer cells, "recurrence" may be recurrence of diagnosis only; the "recurring" cancer may have been present all along), lethal distant metastases, and generally breast-sparing decisions that were not life-sparing decisions. I can hardly wait to have the tissue that gave me one of the greatest joys of my life, nursing my babies, gone forever.
People may second-guess us. But until they have stood at this fork in the road, they cannot know that there are no good options. But there are safest options. Self-preservation is a very healthy instinct. We need not doubt ourselves.
I absolutely agree with you, Laura! When I was diagnosed back in July 07 (Grade 3 cancer - not staged-probably a 1 due to mammary node involvement-). I wanted a double mastectomy but was advised to do just the one. Recovery would be faster so that I could start chemo ASAP. I'm getting ready to go in and have the other breast removed and reconstruction at the same time....so even after a year...I still feel the same way...I do not want to go through this again so take the "healthy" breast!!! But Laura is right...it is a no win choice for many women...I have had a few people question my decision...thankfully, my family and friends support me wholeheartedly.
Great post!!!!
Laura: thank you for your post. I will be having my bilateral mastectomy on Jan. 21st with DCIS, grade 3. I am amazed at the unsolicited advice I've received from many people, asking if I've "thought about this" (as if!) and even suggesting that if I'm "choosing" to do this, I should get "bigger boobs." Not that the decisions was tough enough, and not that the prodecure will be hard enough, I am appalled at the stupidity of people who aren't in my shoes. Nonetheless, I'm confident that, for me, this decision will allow me to get on with my life without the spectre of recurring cancer consuming my every thought. Thanks for your post and here's to good health for all of us!
Thank you for your post Laura.
Amen Dawn! I too have DCIS- grade 3...mulitfocal in my rt breast only...and am planning on a double mastectomy. 3 years ago i had a benign tumor removed from my left breast. Each year i feel terrorized when i get a mammogram. I want this to be over. I am amazed at the ingnorant statements people can make. I am all for better safe than sorry. I chose to be free of this threat. These decisons are highly personal and I don't understand at all why people, other than a husband, should feel the need to get involved in that decision.
Moni - Best of luck to you! I'm about 3 weeks post surgery and have discovered I don't convalesce well (we type A's don't do well unless we're in charge.) I had a lat flap as part of the reconstruction (that's taking more time to heal than the mastectomy) and, although I know I'll feel better in the long run, the muscle relocation is very uncomfortable and causes problems when I try to sleep. I still think it's the best process; just wish I'd been more realistic with recovery timelines. I learned to: let other people help; take all the frozen/ready-to-eat/dinners friends offer (they were a Godsend!); kick back; allow yourself 3 times as long to get stuff done that you used to whiz through; kick back; take someone with you to doctor's appt's. to hear what you forget; kick back! I gained 15 lbs in 5 days - fluid retention - and was surprised. I've lost 12 of it but it was a shock. Good luck. Stay in touch! Dawn
Hi Dawn!
Wow! Thanks for writting back! Boy, I am one of those who is gonna have a tough time sitting still, and letting others do for me too...yikes!
Well, i have to say that i am not certain as to what a lat flap is..I am so curious (i see the plastic surgeon tomorrow so, i am real ignornant here) as to what the pain level is gonna be like. Can you share? Did they do a sentinal node? Is it super hard to raise your arms up to say..wash your hair, etc? I appologize if my questions are elementary, but, like i said, I haven't been to the Plastic surgeon yet.
So, it is really rough emotionally? I am a strong person, and I have strong faith in the Lord, so, I feel ok right now, but, i keep wondering if I am gonna fall apart somewhere here. I got the news 5 days ago. I am more worried about my mother and my husband and my daughter (29yrs old had already had 2 biopsies last month!..they were ok).
You are the first person that i have 'talked' to that has breast cancer/had!
I am the Lone Ranger in my family. No history. I know of distant aquaintances that have had it, but, no one to talk to.
I appreciate your response. It all helps. God bless you and your recovery! :) How long is the Dr. antisipating for recovery time?
With graditude,
Moni
Laura: thank you for your post. I will be having my bilateral mastectomy on Jan. 21st with DCIS, grade 3. I am amazed at the unsolicited advice I've received from many people, asking if I've "thought about this" (as if!) and even suggesting that if I'm "choosing" to do this, I should get "bigger boobs." Not that the decisions was tough enough, and not that the prodecure will be hard enough, I am appalled at the stupidity of people who aren't in my shoes. Nonetheless, I'm confident that, for me, this decision will allow me to get on with my life without the spectre of recurring cancer consuming my every thought. Thanks for your post and here's to good health for all of us!
Thank you for this important clarification: the decision about the double mastectomy. Last year I had a double mastectomy as a safe decision and I did the right thing: the healthy breast was not so healthy acording to the pathology report. One of my relative told me: "you do not want to cure the cancer you want to take it out". I am glad I did take it out. Unfortunately I had to go through 2 lumpectomies for "conserving the breast". Thank God I am strong and all the depression for the same call "margines not clear", a lot of lost blood, pain, days off with no pay - did not put me down.
I have to admit for me the decision was easy: I am old (50), I had small breast, I was scared. I am sorry I was not tough enough to have it from the first time.
Thank you again,
Nadia
I am 66. I have had my second mastectomy two days ago, the first one having been done in April. I do so agree with what is being said about opting for having a double mastectomy. I had a lumpectomy in 2004 and the cancer was HER2. Surgery was followed by chemotherapy and radiation. In March of this year (2010) I felt another tumor in the same breast and was advised to have a mastectomy immediately. This was also Her2. I then received 3 different (very expensive) opinions on what followup treatment to have. I opted not to have any as advised by one of the 'experts'.
On 1 September I did an MRI as a regular checkup on the other breast and a tumor was found, hence the operation this week. This time the cancer is DCIS, but I have not yet received the full pathology report so don't have all the details. Between the two operations I did the genetic test and found that I am a BRAC1 carrier and have been advised to have my ovaries removed as a preventative measure. That operation was actually booked for this week too, but has now had to be postponed.
My advice, following my experiences, is read whatever you can on this sort of forum and go informed to your doctors so that you know what questions to ask and are not fobbed off with answers such as one of you received -' I am the expert so trust me'.
Good luck to those of you still deciding, and a speedy recovery to those of you who have already had surgery.
Frieda
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Hey PJ,
I think that all of us who read your amazing posts week in and week out know that you are the consummate TO EACH HER OWN person! The post you're referring to is no exception -- I felt you were informing, not judging.
Your post was great because it's crucial for women to know and understand the facts that are available so that they can make their decision. Whatever that decision is...
--LZ