Desperately seeking advice
Newbie here, I was diagnosed a year ago with LCIS and ADH after my second excisional biopsy. In Oct. 09 had 2 masses removed from left breast, both 2-3cm. Summer of 2010 my boobs began swelling again with lots of pain. Went to see my Gyn, got mammo, ultrasound and was referred to another surgeon. I have Very dense breasts so mammo not usefull except it showed many microcalcifications, US was very worrisome. My second excisional biopsy, 2 large masses removed from left breast- 6cm and 4cm showing alot of Atypical hyperplasia, and LCIS. That breast is lopsided now. In FEB, 2011 after MRI, mammo and US, Oncologist said they are having difficulty interpreting the imaging-entire MRI showed bright white, US showed most tissue to look the same even though new masses were felt. I live in MN, and Oncologist works out of the U of M, she took my case to a cancer review board there and their conclusion was a bilat PMS. I'm 44 now. Saw the onc. today, she said there is a new med, Aromasin, used like Tamoxifen for 5 yrs, I suffer severe depression, so Tamoxifen was not considered. She set up a mammo, US this week and I see the br. surgeon Monday. I have 4 kids, 2 still in school. Advice would be appreciated.
Comments
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irie4now: I know your question is not rhetorical therefore, and instead of telling you it is a highly personal decision and you must choose what is best for you(which is very true), I prefer to give something more in my responses. Before that, however, I will ask why they waited so long to suggest bmx? Consequently, I am not sure what "bilat PMS" stands for. In any event, I would not wait 2 seconds to get a bmx set up. Breasts are ornamental and you have 4, I am sure, wonderful children. If your questions is to bmx or not to bmx, I say bmx. You have an awful lot to live for.
Consequently, there are several options available for recon, should you choose, that don't involve implants. I am doing Brava and another woman on my thread is getting "butt boobs!" in NOLA later this year. They are actually taking our her TEs (long story why she and I both have TEs in for 16 months) and using those pockets to fill up with butt fat! There are so many options. I really think as time goes on TEs will be used as a means to create pockets and for PSs, with a little vision, to move fat from other parts of our bodies to create new breasts. Brava has been used on women as light as 88lbs so it is fair to say everyone has enough fat to harvest!
My heart goes out to you. If you need anything, feel free to PM or come and join us on my thread. There is a lot of support here on these boards and we will help you sort things out and see you through.
THE BIGGEST OF HUGS TO YOU-
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This is so totally a personal decision, but I had a big blob ( 7 cm by 4 cm) DCIS with LCIS in the margin. I decided on a bilateral ms, figuring I'd prefer to get whatever was in there cooking out instead of risking invasive cancer. I also figured that the other breast, which there had been a number of calcifications and I'd had 4 biopsies, had been exposed to the same things as the DCIS breast. I haven't regretted my decision. I am not waking up worrying about cancer, and I'm feeling pretty good about my body, even without recon.
What would concern me in your situation is whatever is going on seems to be all over. Other people may weigh in, but I personally would go for the bilateral masectomy. Among other things - you don't risk spread and you don't have to have lymph nodes out. But this is something every woman has to decide for herself.
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lizzy- Propholactic mastectomy PMS, I keep seeing it written different ways. Thanks, think because I have no family history and my age are factors to these Drs. I do have somewhat of a butt, I didn't know they did that. Thanks, I have really bad self esteem issues about my body as it is, I would need the reconstruction.
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Thanks to you too Alexandria, I have a great Breast Surgeon I see on Monday.
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irie4now: Just get the recon and you will feel better. I am 41, was 40 at dx, and I immediately decided to go bmx (which was 1/2 pms!) because I figured I would get rid of them as they had decided they were going to try to kill me. Also, speak to the social worker at the hospital. I met such a wonderful woman at Yale, in the survivorship clinic, who was a survivor herself. Often times at the cancer hospitals they have survivors working and are there to help you. I would reach out to someone also to help you sort it all out. It is an awful lot of information to digest but you were blessed 4 times so I am sure a 5th blessing is upon you! Seriously, sometimes we get so caught up we forget to be totally grateful they found this mess before it got too far. For that we are lucky. It is not an accident that you have options. Enjoy the strength of your position and capitalize on what is available to you.
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Irie: I'd second the suggestion to meet with a medical social worker- your hospital probably has one. I found it very helpful. I too have four children and at the time of surgery they were 2, 4, 5 and 7 and I was 42. Happy to talk with you about your feelings, questions, etc. There are many others who can also offer advice should you choose not to go the surgical route. All the best, Kelly
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Many women who do reconstruction actually like their looks better after surgery. When I was agonizing over my decision, a woman at my church took me into the restroom and yanked up her shirt to show two perfectly beautiful breasts - both reconstructed. It was a little weird - but a sweet gesture.
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I thank all of you, I just needed to hear what women who are dealing with this issue have experienced. Great suggestions and insight, I really appreciate all your thoughts. Since my sister passed away, the only women I have to talk to {my mom, and close friend} are in another state. My mom is 77, I hate to worry her, so I say very little. So, again, thank you all.
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It was 3 years ago that I was going through the same experience that you are going through now with ADH, ALH, LCIS. I kept a blog of my story (http://www.breastcancermom.blogspot.com), including choices, decisions, consults, and ultimately surgery. I live in Maine, but opted to go to Boston for a bilateral mastectomy with DIEP reconstruction with Dr. Adam Tobias at Beth Israel Medical Center. Since my surgery in March '09 I have spoken with women all over the country who have found excellent surgeons within driving distance of their homes. Now, 1.5 years after surgery I can say that, for me, it was the best thing I ever could have done for my family. I have two daughters, ages 5 and 9. Now my risk of bc is 0-2%. I feel better than I ever have and would do it all again. Although I must say the decsion to move forward was agonizing. So glad that you reached out to this group. They are wonderful and that's where I turned for my research and support.
Joanie
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I too had LCIS and went for the bilateral prophy with diep reconstruction. This week marks 11 weeks since the surgery. I honestly think the anticipation was worse than the recovery has been! And my anticipation goes waaaaay back, because I lost my mother, her 2 sisters, their mother and their grandmother to BC, and believe me I spent 40 years wondering when my turn would happen.
When I learned that I had LCIS, it dawned on me that I had been given a gift. Fully expecting to develop cancer, and with high risk corroborated by the LCIS finding, I could now actually do something about it! Given my LCIS diagnosis, it took me all of 30 seconds to make my decision for bmx, although I spent lots of time afterward researching my recon options and making that decision.
My thought: you have been blessed with the opportunity to do a pre-emptive strike, and to do so while healthy. My heart goes out to all the wonderful women in these forums who had to face mastectomy and recon (or making the choice not to do recon) after a cancer diagnosis, chemo and/or rads, and all the physical and emotional trauma that goes along for the ride. You have an opportunity to take control of what for most women feels so out of their control.
I don't want to minimize the pain and stress of making the decision in front of you, nor of the surgical intervention--there were some pretty tough days right after my bmx/diep. But truly: just days! It's been less than three months and I feel great, am doing daily 60-minute cardio workouts, am back to work, including air travel, and just love telling my kids that they better be nice to me, because a new lease on my life means I'll be in their lives well into my nineties!
Best wishes as you process all the information you are being flooded with. Spend as much time as you can spare, poking around all the forums here, learning from all the women who have had mx, done all the varieties of recon, and how they worried before, then how they feel afterward, etc. Also look for input by women who decided not to go the bmx route and for whom vigilant monitoring was the best answer.
I think on measure you'll find most women look forward, not backward and the general attitude I find in the forums is pretty darn positive. You're entitled to feel worry and even despair now, but I hope that time spent dropping in on everyone else's experiences will help you see just how empowered you are to turn things in a more positive direction.
Sending positive thoughts --
Carol
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Ire4now,
I totally get where you are coming from, My back story is I was 27 at dx and a mother of 2 kids under 5. Due to the fact that my largest tumor was 11cm i was told i would have to have at least the unilateral mastectomy. But what to do with the other breast was left up to me. After a long process of going back and forth I chose for the bilateral. I figured that I was young and had aggressive cancer, I wanted to avoid precisely the problems you've encountered. Really it boils down to i'd rather be safe than sorry. For my kids I needed to know that I did EVERYTHING possible to fight this!
Self image is another issue we have to deal with. Unfortunately as women we are bombarded with images and messages on how one should look, so when we don't fit into that mold we can be harsh on ourselves. And that is WITHOUT us going through the maze of cancer treatments- so add to that being bald, flat chested and bloated! I am glad reconstructive surgery is an option out there. When we feel normal on the outside we can begin to feel normal on the inside.
Remember we are all here for you, and feel free to PM me if you need to. Good luck monday and keep us posted!
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The decision on what to do with a diagnosis of LCIS, ALH, ADH is very difficult. Each one o f us has to make our own decision based on our diagnoses, family history and most importanmtly our comfort zone. I have been doing the every 6 month follow ups for a while and I am not sure how long I can keep doing it. My decision time may be coming soon.
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Just to throw this option in the mix: I decided against recon - five months ago - and have not regetted it. I still feel pretty, and, I don't have to put on a bra. I go completely flat and comfortable - and nobody notices anything except that I am very thin. Recon. like the bmx, is a very personal decision, but I just wanted to let you know that either option is reasonable.
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Carol57 I feel just like you! My mom died of bc, her two aunts abover her had it. I had all kinds of risk factors: dense breasts, no kids, history of oral birth control. When the LCIS biopsy came, I really felt like I had been handed a "get out of jail free" card. I knew if I did not take action, do the BMX, and later I did get a cancer diagnosis that I would not be able to forgive myself. So I did it.
Happy! I can still recall the young doctor who told me my final path showed no cancer. That feeling I will never forget: like the weight of the world off my shoulders. There I was in a cancer hospital, surrounded by others fighting and this sweet young resident told me I was free. Blessing.
Anyhow, like you I am back to normal, very active and though I wish I didn't have to do all this, I am grateful as heck for the technology that spared me what my mom suffered.
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Irie4now, Three years ago I received the diagnosis of LCIS and it was overlooked by everyone. My breast surgeon , after my lumpectomy , told me everything was benign. It wasn't until I saw the pathology report ,stating Locular Carcinoma-In-Situ, that I said to my husband...Whoa, what's this?? This isn't a negative report??? I was the one that insisted that I see an oncologist. Again I was repeatedly assured that this was NOT cancer and that the chance of developing cancer was very, very low.I was put on a screening schedule. MRIs, ultrasounds, mammos, clinical breast exams.Every 3-4 months I saw someone or had something done.Never once did anyone ever mention mastectomy.In Oct 2010 my Mammo was negative. In January2011 my MRI was negative. In March a mammo was done due to a small lesion that I felt near my nipple. That lesion proved to be negative BUT a new group of calcifications appeared in another area of the breast. Biopsy revealed IDC,ADH and more LCIS.OPnly then did they srart talking about PBMX. If I had to do it all over again I would have opted for the PBMX right off the bat. No meds to take ,no worries about little cancer cells roaming around my body, setting up house in other organs.You're 44, you've got a lot of life ahead of you.My advise,have the surgery. As far as body self esteem issues, I'd venture to say every woman has that to one degree or another and she denies it , she's lying.Reconstruction is amazing , especialyy when the PS is working on a breaststhat have not been messed up by previous surgeries or biopsies. The mastectomies done today conserve as much skin and muscle as possible, not like years ago. Those ladies went through hell!
I know it's not an easy decision to make for most women but I would have preferred to have done this when I didn't have an actual cancer.Thses hormonal drugs are the pits> Good luck with your decision. Again, these are just my own personal thoughts.
Barbara
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Again, thank you all for your input. It's very confusing when One Oncologist says "YOU DO NOT HAVE CANCER" and you have nothing to worry about, the second one says it does put you at a higher risk, but because your breasts are so dense the radiologists are having a difficult time reading them. I had a mammo and US Thurs. and was told the calcifications are still seen on mammo, US is inconclusive. I have been thinking I will get the surgery, but my insurance (govt.) won't pay for recon unless I have cancer. So confusing also because I just got an invitation from the oncology clinic yest. to go to a seminar for women with cancer and meet others going through cancer and how they are dealing with it, but yet I don't have cancer? As a former RN, I am feeling really lost with all the mixed signals from the Drs, Radiologists, surgeons. It is really helpful reading what all of you and others on here, have dealt/dealing with, I can't thank you enough for sharing. I see the surgeon tomorrow.
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Yes, those are the words that I found confusing and frustrating too, it puts you at a higher risk.Insurance companies are run by morons. They would rather wait for you to actually develope cancer and then all the possible complications from that , rather than treat you before hand with a sucessful surgery. and reconstruction. Do they think we'd actually get rid of out breasts if it weren't necessary??? It is a confusing diagnosis and I really think that you have to go with your gut feelings.
I'm an RN also and I'd never heard of LCIS till it applied to me.No one ever talked about it at all.
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Docbabs I think it is terrible that they did not fully explain your path report to you and that you had to be the one to sort it out. That's just so wrong! LCIS is a confusing thing. I see my BS in dec and will ask, "did I technically have cancer or not?". Meaning if I had to fill out a legal form, like an insurance paper, do I check "yes" or "no" on the cancer box.
My insurance didn't blink an eye at the BMX and though I did not reconstruct I dont thin they can legally withhold it.
Everyone is perplexed by LCIS. My obgyn, who first saw my bx result told me I had cancer. She did not know was LCIS was! Then I went straight to another doctor in the same bluing who told me I did not have cancer. My head was spinning! From there I went right to the library to sort out what the heck I DID have. I'll never forget that afternoon. Horrible! -
Beacon800, don't be surprised when your BS says "technically" you did not have breast cancer. I was told that I should checl no when it came to that question.Several MDs flat outright told me that PBMX was way over=reacting for this diagnosis. Ah, hindsight!!
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Thanks for this info docbabs.
Like you said, many docs were also against me doing the surgery. The medicine oncologists were most against it (of course!). My surgeon didn't really say one way or the other. Only the radilogist, one of the senior ones, she told me privately that if it were her, she would do what I was doing based on how "complicated" my breasts were. I thanked her for her candor.
My decision was easy for me to make due to my family hx. If I only had regular LCIS and no family hx I might have gone the tamoxifen route. But I couldn't do that and stay sane, not with what I knew.
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It was my BS that totally refused to do PBMs for my classic LCIS - this was before she ever asked about my family history! (which is weak - paternal grandmother, 2 maternal cousins, 1 maternal aunt, all postmenopausal.) I have a bunch of other complicated issues involved (but doesn't everybody have complicated issues?)
I'm just finishing up my last month of 5 years of tamoxifen. I'll have some tests done this month, to see if I am at risk for osteoporosis.
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Again, thanks everyone. I have scheduled my BMX with direct to implant surgery for the 25th, very nervous. My Gyn, BS and Oncologist have all agreed it needs to be done. My BS basically said, I do have cancer, it was just caught early before becoming invasive.
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I was diagnosed with LCIS last August and had my BPMX last December 2010. I could not be happier with my decision! I look more in proportion with my body type after the silicone implants went in March 2011. In fact, they look more like augmented breasts than a reconstruction. And the added bonus? I never have to worry about taking drugs like tamoxifen or other miserable chemo drugs in the future for breast cancer. On the flip side, whose to say I might not get some other stinking cancer but at least breast cancer should be ruled out. Feel free to visit my LCIS and Preventative Mastectomy blog should you want to get a feeling of the process. I have had quite a few women write and call and tell me it was really useful before they underwent their surgery. www.arleneflick.blogspot.com Also, make sure you feel extremely comfortable with your PS since he is THE PERSON you will rely on the most going forward.
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Irie, congratulations on the peace that comes with making a big decision! Now give yourself the homework assignment to aggressively research all the wonderful tips you'll find in these forums, on how to prepare for your type of reconstruction. This resource is incredible and I think if you can find time to read what women say about having walked in your shoes, you'll find some courage to replace some of that nervousness.
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Irie4now: I am really glad you have arrived at some decisions and hopefully have some peace for yourself now. I will be in the hospital around the same time you are basically for recon that should have taken place over a year ago (long story.) I will be thinking of you and sending you the best vibes. Honestly, hard as it was I really think you made the right decision. It maximizes your chances at beating this stuff and having a long life ahead of you. I am very happy for you and PM me if you have any questions. Don't forget to pack an ace bandage for the drains (you will be happy you did!!).
Best of luck to you-
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Well, I am 1 week post-op, having fluid issues, think I have developed a hematoma over left implant. A dark red bruise showed up yesterday and has doubled in size, also feeling very flu-ish. I am glad I had it done as is my BS. Path showed multifocal LCIS in right breast which did have many calcifications on mammo. We agreed it was a good decision/time to have it done. I am hoping the size of my boobs is mostly due to fluid, they are so hard and bigger than the B cup I had. I have cried looking at them because they aren't mine, has anyone else felt this way?
They did a skin/nipple sparing, I don't know if I should be worried about cancer cells finding their way into what was left.
Thank you everybody for your personal stories, so helpful, especially when people said it was extreme because it's really not even cancer.
I haven't been on for awhile so didn't see some entries before surgery. Lizzymack- hope all went
well, I wish I would have brought an ace wrap, PS took it off the day I left.
I hope all of you are well-gentle hugs to all.
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