Decisions about surgery??
I was recently diagnosed with IDC on January 25, 2013. I had a biopsy the following week and the sample showed stage 1, grade 2, ER/PR+ , HER2-. My local bs did the biopsy and it is a wonderful practice, warm and very supportive. They are a breast care center so they are only focused on bc. I did get a second opinion at MSK last week and had an MRI, mammo, US, and auxiliary US. I am going for my third opinion this friday at Upenn in Philly and am hoping all three will be the same. I am having a hard time with deciding what surgery/next steps because so far both bs have given me the option of lumpectomy with radiation or mastectomy with immediate reconstruction. All of this is pending final path and oncoDX typing. I am finding it so overwhelming to not only absorb all of this, choose a bs, and plan the whole surgery right now but feel that even though I am ultimately leaning toward bilateral mastectomy with immediate reconstruction, I don't want to wait another few weeks or possibly a month before I can have all of my plastics consults make a decisions about which team i want to use and hope that they are able to schedule me relatively soon. I also don't feel that I have the energy to start learning about reconstructions set up even more appts than I already have right now! My bs at MSK suggested that I can get the lumpectomy first and then wait for my final path and oncoDX typing (I also did the BRCA test but have no family history so they think that will be negative) and then if all path is still the same, move forward with the surgery then.
I would love to hear from more women who have done it this way (lumpectomy, wait for final path, then proceed with mastectomy with immediate reconstruction) and also I want to understand that if I do have the lumpectomy first and then go back after final path and do mastectomy with reconstruction, do I have all of the same options as if I would have If I did the surgery all at once?
My bs at MSK feels like their could be a different course of tx recommended once the final path is back and that there is still the possibility that I may need some chemo or radiation (if I go with mastectomy with reconstruction and my path is the same, I will not need radiation or chemo, just tamoxifen).
I am 40 years old, no family history of BC, breastfed two kids, exercise, eat healthy, don't drink or smoke, and basically have no risk factors! My first mammo was clear back in July but I felt a lump afterwards and pursued it myself and then ultimately found the tumor thru ultrasound. I am a part of the dense breast category of women and my initial reaction was more of anger when I found out that the Radiologist at my local community hospital did not indicate in the mammo report that I was extremely dense. I have learned so much about density and know now that only a few states have laws that require the report to tell women that there is density in their breast tissue. Once all of this passes, I hope to somehow get more involved with my local congressman/senators and work on this issue!
Sorry this is so long! I am usually not one to post but I am realizing what a benefit this group can be.
Thanks so much for sharing!
Comments
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We have a similar diagnosis. I was 45 at diagnosis...no family history, exercise regularly, no smoking,etc.... I had a SNB first but was pretty sure I was going to have a BMX. When my surgeon did the SNB he saw the tumor there and just took it out. I got the pathology back before my surgery for BMX. I did do the BMX with TE's. I got 2 opinions from PS's and BS's before my BMX. I selected the surgeon I felt most comfortable with. My oncotype was 17. I had LVI in my pathology of the tumor. After I got the final pathology back from the BMX there was some DCIS and another tiny invasive area. I am glad things worked out that way with lumpectomy and BMX. I so suggest meeting with the PS's to see what kind of reconstruction they recommend. I was not a candidate for DIEP because I did not have enough body fat so implants were my only option. SInce I exercise so much and teach aerobics neither surgeon would do any reconstruction involving muscle. I hope this helps.
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Similar boat here....met with BS last night and was given same options...having BRAC test tomorrow...need MRI and going to have consult with PS & radiation oncologist by mid next week hopefully....I had biopsy on 1/28 & Rec'd results on 1/31...but as of today the rest of path report that contains the ER/PR/HER info isn't in yet...anyone else hear of it taking so long??
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emort- i was diagnosed had my biopsy on jan 22nd and the bs called me with the initial diagnoses on jan 25 that it was idc. by the following tues, jan 29, i had my er/pr results back but the her2 didn't come in until feb1 (for some reason that takes longer). i would call your bs tomorrow bc maybe they are waiting for all results to be back but my bs likes to give you info as it comes in.
i had a consult with ps today-- i am pretty confident that I am going with lumpectomy first to get this final pathology going and the bmx with recon hopefully soon after that if all goes well.
I am trying to take it day by day and everyday i feel stronger emotionally --although i find that after talking to survivors i tend to change my mind often! the consult with the ps was really informative--i now know that i am not a candidate for DIEP and that my breast are not droopy enough so that he can use the skin from them! i guess being in shape and healthy is not paying off at this moment!
I have one more consult on friday at a university hospital and then hopefully will make a decision about which bs to use!
btw- i live in bucks county pa too!
good luck!! -
mdg- thanks for your reply. i did see ps today (locally but it was good info). he doesn't think i am a candidate for DIEP for the same reasons as you. now i just have one more consult with a bs on friday at upenn and then hopefully will schedule my biopsy for the next week or so! i tried to get another appt with a ps but he doesn't have an appt until april! the office said that once i see the bs on friday, she would be able to call and have me get into him soon so that I can figure out a plan for bmx. as much as i go back and forth i just feel like once/if i do radiation, a ps will not be able to use an implant and then since i am not a candidate for the DIEP what would i do? what if i have recurrence? two days ago i though for sure i would do bmx with reconstruction but then today i spoke to a 19 year survivor with similar diagnosis and she is highly against bmx and thinks that too many bs are overly aggressive. she said she has met so many women who regret their decision for bmx and make it under such stressful conditions that they never get over it. it's hard to tune it all out and i'm terrified of bmx and recon but i don't want to regret in the long run not doing it!
did you struggle with your decision?
thanks! -
(((jsrose14)))...this is a very difficult time for you, I know what you are going thru, it's so hard to make decisions and not second guess yourself...my breast surgeon did a lumpectomy first followed by BRAC testing, MRI and PET scan so we had as much information as possible to decide whether to do a Bilateral mastectomy. I was glad we were able to get the lump out and do the axillary node dissection quickly after the biopsy so I had the time to complete chemo while I met with plastic surgeons and discussed my next steps. I had already decided that I did not want radiation due to the side effects and I am concerned about recurrence or a new occurrence in the contralateral breast, which radiation to the tumor bed after lumpectomy would not prevent so in light of my risk factors and the fact that I want reconstruction I decided to schedule the bilateral mastectomy. The plastic surgeons have been very clear - if I have radiation they may not be able to do implants and, like you, I don't have enough of my own tissue to do a DIEP. My surgery isn't until March 4th so I can't tell you how that surgery went but I think I am making the best decision and my team supports it (oncology, plastic surgeon, breast surgeon and internist) so....like others on these boards have told me - make the decisions you need to based on the information you have and don't look back...Good luck with your decisions...(((hugs))) Maureen
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jsrose,
This is a very difficult decision for so many women. When my BS asked me whether I wanted a lumpectomy or an MX, it took me about a 5 min pause before answering LX + rads. He was relieved because there was no indication I needed an MX. I knew that going into surgery, there was an outside chance he would have to take more tissue than planned, and he found a cyst and fibroadenoma to remove. This breast was larger than the other, and remarkably it still is. If it had been my smaller breast would I have decided otherwise? Not sure.
Do I worry about what will happen if I get a local recurrence? Of course. Will I have a local recurrence? Odds are I will not. As I've learned more about MX and reconstruction, I suspect I'm not a candidate for a DIEP. With rads implants are unlikely. Would I now choose an MX? No. Except for no nipple, which I would have had to lose regardless because of where the cancer was, I still have my natural breast with all the sensations that go with it. And my surgery was rather minor (except for the nasty SLN part of it that couldn't have been avoided with either).
Good luck with your decision.
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wow such wonderful responses and all so personal--this is what my experience since being diagnosed has shown me. Everyone has their own personal experience and process after being diagnosed. Mine is different in that my MIL died of bc 5 1/2 years ago. She had lumpectomy with rads 12 years ago after having a stage 0 precancer tumor (i don't know what her type was but it was hormone receptive). 7 years later it metastasized and somehow came back at triple negative--she was gone in less than a year. Nothing anyone or any statistic says can help me not consider this previous experience but at the same time I don't feel that women who don't choose mx are making a wrong decision. it's just so personal. I am 10 years younger that she was when she received her first dx. For me the anxiety that this experience brings is unquantifiable--not matter what statistics are thrown at me--this experience stays with me and connects with me more. In my heart, I know that what happened to hear is so rare and that I will come out of this healthy and here for my children and their children for a long time but the fear is always lurking somewhere deep within.
A good friend of mine told me that maybe this is an opportunity for my children and myself and my husband to see that people survive this disease and life goes on---I truly believe it but I also feel that making these initial decisions for me has been all the more challenging.
Thanks for the responses and support! I hope once I get thru this phase I will be able to support more people going thru it.
This truly is a transformative journey,
Jill
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jsrose - I too was a lumpectomy candidate, but I chose BMX with reconstruction beause I knew that as someone with dense breasts (my 2cm IDC was not seen at all on mammography) that are fibrocystic I would never relax unless I removed both breasts. I had half a dozen cysts in each breast, and I could not tell a benign lump from cancer just doing self-exam and because I don't image well I did not trust mammography going forward to keep me safe either. It turns out that I had both Atypical Ductal Hyperplasia and Atypical Lobular Hyperplasia in the non-cancer breast - never seen on any imaging, and I also felt that if one breast could manufacture cancer so could the other. Even though my road was not easy I have no regrets, I had a skin sparing/nipple sparing BMX and am happy with my choice. One thing to remember about doing a lumpectomy and radiation is that should you decide to do MX/BMX afterward you do limit the recon choices down the road due to radiating the lumpectomy breast.
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My situation was very similar to doxie's. I had lumpectomy + radiation because nothing more drastic was indicated. Although I have dense breast tissue, my risk of developing ipsilateral (same breast) or contralateral (oppositive breast) is fairly low going forward because of the treatment protocol that I had.
The issue between to have a mastectomy or a lumpectomy is not one of long-term survival. Both types of surgery have the same survival outcomes because the surgery itself does not affect your risk of developing metastatic disease in the future. Your risk of developing metastatic disease is determined on the stage/grade/hormone/node status of your cancer - and your genetic predisposition towards developing metastatic disease - not on the type of surgery you choose. That's one of the reasons why some oncologists don't recommend a mastectomy when a lumpectomy will do the job.
That said, opting to have a mastectomy when it's not clinically warranted is a deeply personal decision that must take into account not only the nature of your cancer, but - also - your physical condition and emotional health. A mastectomy is not an easy surgery; neither is the reconstruction process, if that's what you decide to do. It has more risks and a longer recovery time than a lumpectomy. A bilateral mastectomy is, even, harder. However, if you are physically up to it and, emotionally, you know that you will just be too anxious moving forward if you don't have a mastectomy, then a mastectomy would be better for you. You have to be able to move forward with your life without being terrified every time you have to go for a check-up or mammogram or dealing with unrelenting anxiety in between check-ups.
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thanks maureen, i am hoping to have a similar path as you and would love to know how you fare on your surgery. please let me know. right now i am scheduled for my lumpectomy wednesday and will hope to gather more information while waiting for the final path and meet with ps to see what my options are for reconstruction. i am hoping that by giving myself a bit more time, i will ultimately know what the right decision is for me!
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Amen re breast density. My case is not exactly like your, but I had a ductal excision aka partial mx aka lumpectomy that revealed ALH and ADH . I had a preventive mx three mos later which reveal a 1.1 cm Idc hiding in those dense breasts. The first surgery was not a big deal for me and I felt fine soon after. The second was tougher. The surprise dx was devastating.
I had mx to expanders to implants. It was tough but worth it to me. I'm thrilled with the new me. It doesn't feel the same but I'm glad the old ones are gone. -
(((jsrose14))) I'll keep you in my thoughts and prayers on Weds that all goes well with your lumpectomy and there are no surprises...please let us know how you're doing and what you find out...sometimes time feels like our enemy when we are waiting to "get the cancer out" but time is also our friend when it allows us to get the information we need to make a decision we can feel confident with - the roller coaster of breast cancer! Take care, Maureen
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