DCIS and Mastectomy?
Comments
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Teri, I chose to have BMX, although the MRI had detected some suspicious spots in my right breast that turned out to be nothing. I had F cups and couldn't imagine having a surgery on my right breast for matching that would not decrease my risk of BC. Some people are fine with keeping their other breast and hardly consider BMX. I think of my breasts as a matched set -- when one had to go, so did the other -- especially since the reconstruction I chose is rather complicated. It all boils down to what you can live with, what will make you feel safe, what will minimize your regrets later. I hope your surgery is successful and chemo is not needed! Best wishes!
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I am a DD as well and while so far no mastectomy, I did have stuff on my most recent mamo that had me thinking about what I would do if the biopsy had come back bad, my decision was that I would do a double mastectomy to just have the same look on both sides. In my mind, I was not planning on reconstruction, or at least for the time being.
hope you will not need chemo and best of luck
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Thank you LAstar! This site has been very helpful for me.
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Teri,
I am also a DD and have a very large DCIS lesion 8 cm at greatest measurement in the left breast. Even thought my right is clean, I am having BMX. I am BRCA2+, which is one of the reasons for the BMX, but I was also concerned about symmetry, and I have wanted a reduction for several years since I finished nursing mu daughter. Even if I were not BRCA2 +, I think I would want BMX. The stress of the MRI, mammogram, biopsy cycle is unbearable. Some people react very differently and only want lumpectomy, etc. I knew Immediately I wanted MX. My mother was very young, 38, when she died from BC so I am taking no chances!
Heather -
howhm02l-
I'm really scared to see myself after the BMX. It will be so strange. It seems like the majority of ladies have some type of flap reconstruction. My PS is recommending TE and implants. This sucks
I hope your surgery goes as smoothly as possible! -
Thanks, Teri. I am terrified about that as well. I am planning to DIEP, which is scheduled for 8/30. My PS wanted at least a week after the BMX to make sure I will not need radiation or other treatment. I hope you ate able to make a decision you are comfortable with and have successful surgery!
Heather -
Howhm: So does this mean you just stay in the hospital for a couple of weeks? I understand the reasoning behind waiting a week, but in NH they recommend not waiting and having it all done at once - 10 to 12 hours of surgery - very scary. However, is that better than doing surgery twice???? I have wondered how they know I won't need chemo or rads and are going to go full bore ahead and what happens if I do after the path is back?
Well, I will be thinking about you and praying on the 30th that all goes well, I'm sure it will - keep the faith.
I am trying to decide if it is more important where and by whom I have my surgery, or the type of surgery I have. i.e. I have two choices, either to have a TRAM here close to home, in a small hospital, with surgeons I really connect with on 9/5. Or, go to Boston on 9/17 and have a DIEP - I like the PS, but did not really connect with the breast surgeon. How do you make this kind of decision?
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Positive, sounds like a hard decision to chose the place and the logic for the doc. I do remember once years ago when I was having sinus surgery. I thought the surgeon was a flaming jerk! I wanted to back out! My PCD who was also a pulmenary specialist told me to go ahead...she said all surgeons are jerks with no bedside manner!
not sure if that really applied to BS surgeons but do think my MO has more bedside manner than my BS even though I believe my BS is really good.
Hang in and know that you are fortunate to be near Boston with some awesome docs to chose from!
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Positive - i will have the bMX on 8/16, probably go home the next day, and then go back in for the DIEP on 8/30. It was interesting because the BS said the preference was for immediate recon, but the PS said the plastic preference is to wait until that final pathology report comes in. The PS said the concern is that they will do the flap, find out 5 days later that I will need radiation, which could kill the flap, and then have to do it again. I dread two recoveries, but I think it will be best long term for me.
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How do you know what grade your DCIS is, I thought they could not do that until after surgery?
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My grade was determined from my biopsy.
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Mom to Lisa and positive energy, I have been through a similar journey from finding lump to many biopsies, 3 lumpectomies and a surgeon who kept telling me each step that we could take the wait and see approach. At first I hated the thought of mastectomy but each time they went in they found more that hadn't shown up. Tumor board recommended rt mx with rads and hormones for left which only showed papillary pre cancer but to my mind the possible side effects from those treatments far outwayed having BMX. Then I did a lot of research on reconstruction including doing nothing. My original surgeon said with my body type..size 22 that I would not be happy with concave chest and bulging sides. I talked with many friends and friends of friends, read these boards to get info on types. My surgeon who I really liked was at our local hospital but the only do expanders with inserts. I just knew I didn't want to go that route. Ended up at Smilow Yale New Haven with Dr. Lannin BS and Dr Au PS. They try for DIEP but if feel outcome better they do muscle sparing TRAM. Had this on 7/25 and have to say other than few glitches (beware of thrush..side effect of antibiotics. Sore throat white patches in mouth..insist they treat you!) all has gone quite well. Still a bit swollen but pain was minimal. In fact only true pain is from hemrhoids which were an issue prior to surgery. Had 6 drains and they are a pain to deal with. Down to 2 but stick straight out from hips so constantly wacking things. They come out next Monday. All in all things went well. Some fuzziness from 13 hrs of anesthesia and 4 days of morphine but now just using tylenol and doing ok. Pm me if you have questions. And best news is path report did show more areas missed by many mammograms and MRI BUT all non invasive and ducts clean so no rds, chemo or hormones! And everyone...md, nurses even hubby says boobs look great!!
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Hoya03Mom, I see that you're also being treated at Smilow! I had Dr. Killelea as my BS (love her!) and am also using Dr. Au for reconstruction. I'm small breasted and opted for a uni w/ TEs because they thought they could do a nipple/skin sparing MX and get a good result (thankfully, they did). My surgery was on 6/7 and so far everything has gone pretty well. I'll be seeing Dr. Au this Monday too for my next fill...maybe I'll see you in the waiting room!
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Hoya03mom, so which procedure did you end up with the DIEP or the TRAM? I am very encouraged to hear how well you seem to be doing, knowing it is not easy. My prayers to you for continued recovery and glad to hear the boobs are a thumbs up LOL
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MomtoLisa: I feel for you, you will be ok, I'm so sorry you are dealing with this. I had some similar experiences, recently lost my mom 64 and dad 66 and father of my children 49 from cancer (lung, prostate and rectal). Hold on to God in your heart girl, that is what has been carrying me through. I was diagnosised on 6/6, still waiting to make my decision for surgery, but getting close. I have the option to do a BMX with TRAM on 9/5 or a BMX with DIEP on 9/17. I have been through quite the journey and do not know how I have continued to live my regular life (with some slight modifications - a breakdown here and there and a day of sleep and this discussion board - that's how!), so I give all that glory to God I could not do it alone. I am amazed every day that I am able to hold it together
Keep reading these ladies posts, give yourself some time to make the decision and listen to your body. You will make the right decision for you. For me, I am not taking any chances, I have DCIS in my left, which I was told originally was .8 mm (recommended lumpectomy and rads), it has progressed from there with additional testing to be an 8 cm area of DCIS in my left and my right is fine. I am having them both off, I do not want to have to do MRI's and Mamo's every six months to monitor my health, especially since they didn't find this, I did. I'd rather just be done with this and move forward with my life. That's my choice, but we all make different choices for different reasons. Allow yourself to be TRUE TO YOU!!! Hugs and my prayers are with you in this tough time!!! Brenda -
Mom to Lisa,
You don't need to make a decision before you have a lumpectomy. That surgery is pretty easy for most of us. I had both of mine under a local and could work from home the next day. They will get the DCIS out, and you will no longer need to worry so much about the comedo necrosis progressing to microinvasions.
The pathology reports from the lumpectomy are much more complete. They will know whether the DCIS is widespread or localized. You can make a more informed set of decisions. It buys you time and information.
Radiation is no picnic. For BC patients, however, it's generally a lot easier than for people with cancer in other locations.There are ways to reduce fatigue and skin problems to a manageable level for most but not all of us. The radiation boards here are full of them. Read through the recent ones for a sense of how people are coping.
I live in Canada, where no health decisions are based in the costof the treatment to the patient. So I can't say anything about the cost of a lumpectomy and rads vs. Mx and reconstruction. I am not an MD, so I know nothing about the risks of a Mx.
The trick is to feel like you have as much control, information, and support as possible so that you can be confident in your decisions. And that sure doesn't happen easily with BC.
We're here. Glad you found us.
Keep us in the loop, eh?
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I don't know that I should even weigh in because I had low grade DCIS alone, so it was a lot less complicated. But if I were in your shoes with anything more than what I had, I would go for a double mastectomy. There is too much going on with you to give you any peace of mind going forward and you have seen the results of rads first hand.
From what I have read here, mastectomy is not that difficult though reconstruction strings out recovery a bit. Do what your well informed mind is telling you to do.
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MomToLisa, my heart goes out to you. You have had to endure too much, but you sound like a strong woman and I know you will make the right decision for yourself. I gave myself deadlines on decisions and just researched during the interim without feeling any pressure to decide. By the time my decision date came around, the decision had percolated to the top and was clear to me.
You can find information on interpreting your path report here: http://www.breastcancer.org/symptoms/diagnosis/
2-3mm seems really small. Has anyone suggested having an MRI to determine the extent of the DCIS? There is some research (I think just presented at a symposium but not yet published and peer-reviewed) that found MRIs to be more accurate than mommograms at determining the extent of high-grade DCIS. I had an MRI between my lumpectomy and re-excision and it indicated that the DCIS was much more extensive than previously thought. If your DCIS is very small and not widely distributed, a lumpectomy may be just fine. With high-grade (fastest-growing) DCIS, you will probably not get out of rads.
I was never able to choose the MX option -- I was too scared -- but two surgeries with involved margins required it. The survivial rate for lump vs. MX are the same, but the recurrence rates are not! Now that I have the BMX behind me, I am relieved that it ended this way. I have a 4-year old daughter that I want to be here for, and I am glad that I ended up with the more aggressive surgical treatment. You have already had the experience of going with your gut against a doctor's recommendation and ending up right. You have to listen to yourself every step of the way, because you are the one that has to live with these decisions. There are plenty of people on these boards that are glad they were more aggressive. I had a prophylactic right MX after an MRI found suspicous spots but nothing was found there after all. I have no regrets! There is something to be said for peace of mind after your treatment.
You sound like you know what you want, but you feel like you need to justify it to the doctors. You don't need to -- it is a reasonable option. I have had uncomfortable conversations with three of my physicians about my treatment plan, and it has impacted my treatment positively. In every case, the doctor came back and told me that it had been a helpful/instructive interaction and that it would change his/her approach in the future. Don't be shy about challenging them about decisions -- they want to help you.
Best of luck with your decision and treatment! The recovery is what it is, but the decision-making is torurtous!
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MomtoLisa,
You've had a lot of suggestions from others so I will only comment on one point that hasn't been mentioned yet. You say that you have calcifications in both breasts that have been there for years. Calcifcations are very common - about 50% - 60% of women get them - and about 95% are benign. The most important thing to understand is that benign calcifications do not become cancerous. So if you've had benign calcs for years, those will remain benign; they are harmless.
At the time that I was diagnosed, I had calcs in both breasts. Through biopsies it was determined that the calcs in my right breast were breast cancer while the calcs in my left breast were benign. Because of how extensive the DCIS was in my right breast, I had a single right breast mastectomy. The benign calcs in my left breast are still there 7 years later, causing no problems.
From the description of your preliminary diagnosis (recognizing that the you will only know the full diagnosis after surgery), it sounds as though your options may range from a lumpectomy only all the way to a bilateral mastectomy. Only you can know what the right approach is for you; I won't suggest that one option might be better than another because I don't want to influence you or direct you... obviously anything I say would be a reflection of my preferences and my risk aversion or risk tolerance, not yours. In any case, there is so much about your diagnosis and your risk that you don't know yet. What's most important is that you have as much information as possible about your situation so that you can make the decision that's right for you and to that end, I thought that this information about calcifications might be helpful. It's certainly something that you should discuss with the oncologist, to get her take on things. I hope that you have a good discussion with the oncologist on Tuesday and that she explains well all your options (lumpectomy, mastectomy, BMX, rads, Tamoxifen) and how your risks, both for recurrence and a possible new primary BC, are affected by each option. That's the information you need to make the decision that's right for you.
And in the meantime, here are a couple of links to information that might be helpful as your prepare for your Tuesday appointment:
Treatment for DCIS (from BC.org)
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Mom to Lisa your post summed up my thought process perfectly. And final pathology results did show more that they failed to detect on many MRIs and mammograms. Now I can void radiation and hormones.
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Momtolisa, I had Dcis in my right breast they recommended a UMX or a LX. I said, due to family history, if you take one, take them both. They didn't really fuss too much just wanted me to knowy options, some of my coworkers thought I wad nuts, but I went with the BMX. Glad I did, a 1.6 IDC was hiding in there, missed by both mammagrams, and ultrasound. So onto chemo (it was her2+) and Herceptin for me. The BS and PS both said that was extremely unusual, and they were surprised, and happy for me. So if it is something you really feel the need to do,.they will do it.
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Hopeful,
I have the same diagnosis. I have already been through 3 lumpectomies not successful. Scared of radiation. meeting with doctors for a right mastectomy. Scared as all hell but I feel that If I go ahead with the mastectomy I will not have to ever worry again(on one side anyway) Such decisions no one should have to make. I am also thinking of both sides and having a hard time there. No one can tell you for sure that it won't happen on the other and being only 46 I really do not want to go through this again! I would love to know how you are doing!
JMH46
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Clp821,
How did you like DR Au? I am researching a PS. It is hard. I have been to UCONN and like the PS there but DR AU was on my list also. This is such a hard decision to make.
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Jmh46
Dr Au did my surgery 3 weeks ago. I think he is great! So far so good. If you have specific questions pm me. Just sitting around with time on my hands!! -
JMH46
It is a really tough decision! To answer your question, I really like Dr. Au as a surgeon. So far everything looks great and I haven't had any real complications. I'm not sure if you are thinking of having TE to implants like me, or DIEP flap, but I understand that he is skilled in both types of procedures. He is letting me call the shots as to the fill schedule - to my tolerance and according to my work schedule. He's very personable (while still being professional) and I would definitely recommend him.
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Well, the surgery is finally scheduled for me! Gotta wait until 9/17/12, but decided to go to Beth Israel in Boston. It's really true, when you finally come to the decision you really do know it is the right decision for you. Not that I'm not scared because I am terrified. But, at some level I am relieved. I am going to have a DX with immediate DIEP reconstruction. Got lots of support on board already, feeling quite blessed. So, in the meantime, how do I deal with the anxiety WAITING WAITING 26 days. I'm trying really hard to look at it as if I have 26 days to be the me I am now, because things are going to be different. The idea of how life changing this is has been difficult to accept, but I'm getting there. Hope everyone is having the best summer they can!!! Hugs to all.
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positiveenergy...you have 26 days to enjoy life, get yourself in the best possible shape healthwise...eat healthier, (blueberry protein shakes are great...freeze fresh blueberries, dump in scoop of vanilla protein, couple of table spoons of lowfat vanilla yougurt and blend....) work out, especially your stomach muscles and legs and arms which will help you be more mobile in the days ahead. Know it is a long road, but it does get better each day and you will wake up and look great! I am 4 weeks out from mine and other than few minor problems with wound closings, things have been pretty good. Back to driving, can sit at computer for hours vs mins just a week ago...SO glad I went this route. If you have specific questions, feel free to PM me!
Kathy
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I went to my appointment at Yale and I must say I am more comfortable there than I was at the other. I am waiting now on my appointment with PS. I understand how you feel positivenergy. But I must say I would take hoya03mom's advice. I have already started working out again as I had stopped when I went through all the lumpectomies I had one after the other and it was hard for me to start and have to stop. So that being said it was time to start again!! It does make you feel better if that is at all possible. Positivenergy I wish you the best on the 17th. I hope everyone is doing well!!
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Thank you so much for your responses ladies. Hoya03mom, if you are not a coach of some sort, you should be, you pumped me right up. Thanks for the uplifting message.
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Postivenergy: Ditto from me on Kathy's recommendations. In addition to preparing your body for surgery get your recovery plan in place. There is another message board here I think under before/during/after that addresses this. I had 3 weeks after my decision for nsbmx to prepare for the big day, a close g'friend took the lead and organized 3 other g'friends to make dinners for me and my husband for 2 weeks post op; I got clothing loans from my friends [big button or zip front shirts]; I talked to family almost every day; my bro and his family came and visited me for a few days; I bought a nice new pink robe; I got my hair colored & cut. Basically if you have any unfinished projects or to-do's at home, take care of them, recovery takes a lot energy and time and you will have limited ROM. The wait was agonizing, but when the big day came I was relieved to just get it over with. Oh, if you have not started a journal or calendar (American Cancer Society has free Health Manager packets they'll Fed Ex you, includes a calendar) I highly recommend you start one. I'm 8 weeks out and I always have question that I write out for my doctors and bring my journal to appointments. In my journal I recorded the fluids that come out of my drains and the daily pain meds I took, to avoid overtaking. I wish you the best in the days ahead.
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