DCIS...some thoughts...
Comments
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I feel lucky that my doctors (both men) did not minimize what I was going thru. They were very reassuring, as in telling me, "it's non-invasive, very early-stage" but they also reminded me that I needed to make some tough decisions because to do NOTHING would not be smart.
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Having just been diagnosed with DCIS I am definitely the newcomer here, but I feel strangely reassured by the raw emotion of this thread. I like the 'no holds barred' attitude and welcome the honest viewpoints of those of you that have been under the knife already.
I felt both relief when told that my cancer (yes, they did use the word) was non invasive, but this was quickly followed by anger that I would still need a full mastectomy. My surgeon actually said it would have been better if it had been a tumour because the chances were they would only need to do a lumpectomy - great, that made me feel so much better!
I am currently in the limbo land after diagnosis and before the 'plan'. I am enjoying having both my breasts for a few more weeks and making the most of taking them out to show them off while I still can. I don't know what the future holds, but could do with some advice about which type of reconstruction gives the best outcome and the least complications.
I agree with Beesie that this type of s---- happens, but what is so important is how you fight back. This website has allowed me to understand my condition and gain control of my treatment I want to thank you all for the invaluable information and support that you continue to give. I know that some of you answer similar questions from different contributors. but take it from me, when you have been knocked for six by the big C and are on the ropes, it is a relief to discover such a wonderful group of fighters
Thank you -
Scilla,
I am a fellow DCISer. Mine, too, was non invasive. I am 45, so I defn wanted reconstruction after BMX. I knew from the start I didn't want to worry about the cancer coming back. My PS felt I was a good candidate for the TRAM flap, but I chose TE and saline implants. I am 4 1/2weeks post exchange, and I see the light at the end of this journey. I was blessed to not need chemo or rads, so the pain and discomfort I feel is nothing compared to a lot of people. Not a day goes by that I wish things were like they used to be. But I have come to realize this is the life God handed me, so we have to deal with it the best we can! Good luck with your journey! You can private message me if I can help you with any questions you might have! -
Hi Amyrich,
Thank you for your post.
I see you are having implants and I would definitely like to know more as my surgeon seemed very keen on this route. For me, the other types would involve 3 operations - mastectomy, reconstruction and then reduction of the other breast. I have just over a week to make up my mind and decide on my final plan. Since I am relatively new to the site I do not know yet know how to private message - I'm hoping it is easy.
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Scilla,
I posted up-thread. I was recently diagnosed with a recurrence of DCIS in my left breast after 4 years. I had a 1cm lesion originally, treated with lumpectomy, radiation, and tamoxifen. Since I have recurred, I have elected a bilateral mastectomy (right prophy) with DIEP reconstruction. Having had radiation, I am not a good candidate for implants -- and I don't want them for many reasons. Autologous tissue was the way to go for me, and DIEP involves no muscle, so that was also important.
I elected a BMX because I have a very strong family history, although I am negative for BRCA 1 &2. I'm in the States with private insurance, so a BMX is possible given my history. I don't know how it would work with the NHS, or if you were even interested.
Just wanted to tell you my story. Good luck and ask any questions you want.
L -
Hi Happy Libby,
I thought about DIEP reconstruction because of the lack of involvement of muscle, but I was a bit put off by the thought of 3 operations. The surgeons are not keen on BMX here - they do not like to remove healthy tissue without strong family history of breast cancer. Mine is just chance and age so I'm told! I'm still considering all the options and would be interested to here more. I've just found out how to private message and could send you a message if that's OK. I want to hear all sides before jumping off my own personal cliff,
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The good news is, you have lots of treatment options. The bad news is, no one is going to tell you what to do! And none of it is easy. Yes, we get to skip chemo, but that's it. You may call yourself whatever feels right for you. This may change as you go through treatment.
No matter what you're going through, they're will ALWAYS be someone who is worse off. But that doesn't mean you're not suffering. It's like when I broke my leg... Simple break, six weeks in a cast and crutches. I got off WAY easier than those who had compound breaks, surgery, pins, external fixators, etc., but that doesn't mean I had it totally easy. Far from it.
Good luck as you make your decision and start treatment, whichever path you choose. -
Absolutely, Scilla! Please PM me and I will be happy to fill you in on the particulars of my situation and answer any questions you might have!
L -
gosh. I have had terrible internet service recently and finally had enough time to come back and read the posts...I am so blessed by the number of open and honest words found here.
I am having my BMX with tissue expanders on July 25, and will eventually have silicone implants. This was hands down the hardest decision of my LIFE.
I talked to the NP at the surgeon's office a couple days ago about how I was feeling as described in my original post..she said You had Cancer. You ARE a survivor. What you are going thru is not easy, and you are BRAVE. I tell you, I was almost in tears.
Tonight, I tried (again) to talk to my mother. she says that I should be concentrating on being "cancer free" right now, and not worrying about treatments etc. She does not agree with my choice. She said "I'm old and see things differently" Which of course made no sense to me whatsoever because as I told her, the traditional tx for DCIS was mastectomy. She said she just can't talk about it, and "you're making the choice you think is right" which seemed to imply that its the wrong choice, but I think its right. Then she said "end of discussion"
So disheartening because this would be a really good time to be able to talk with my mother. (yes the same mother who's mother had breast cancer and still won't get a mammogram...some denial going on there for sure). (and the same mother who said "if you are worrying about it coming back, radiation isn't going to stop it. There has to be another option") She REALLY doesn't get it. To the point that even tho I told her over a week ago that I am having surgery on July 25 she was still surprised tonight when I reminded her of it. "Oh really? You are still planning to do that?" No mom, I just figured I'd make the whole thing up. grrr So I have decided, yeah, I'm a survivor. And you are too. And you...and you...and you...on and on.
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Wow. Great thread. So honest! I appreciate this so much, because I too am struggling with calling myself a survivor. I'm BRCA2, so I have watched many family members fight (and eventually lose the battle) with late-stage bc, and watched them do chemo, rads, mastectomies, the whole nine yards. After seeing them tough that out and eventually succumb, I feel like I don't count because "all" I had to do was the bmx. Yet that was no small thing to go through, and I am still dealing with the emotional fallout.
I'm so glad to know I'm not alone. Maybe someday I'll feel more like a survivor, and maybe I'll run Race for the Cure like my well-meaning friends want me to (I am a runner). For today, I'm holing up with my nearest and dearest and trying to move through the grief of losing so much to bc.
We are survivors. Or we had shi!t happen. Or we were on the losing end of a knife fight. We all made big tough decisions about a situation that we wanted no part of. There is no wrong way to approach this.
DeeLJ, thank you for posting this. Best of luck with your mother, I'm so sorry you don't have her full support. Best wishes.
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Of course you are a survivor!! You were aware and taking care of yourself or it might have been a differenct story. I had Paget's which attacked the nipple and areola along with DCIS so losing most of the left breast was a given. I opted for DMX to decrease the chances of a recurrence of any type of BC in the other breast and improve my chances of sleeping throught the night again. I had simultaneous reconstruction and returned to work in 4 weeks. I will be 2 years post MX in October and looking forward to being a 2 year survivor. search your heart and listen to your gut and you will make the right choice for you. Every woman is different. My choice was the only one for me and I knew it and have not had a moment's regret and have enjoyed great peace of mind.
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Oh wow - here is the thread I was hoping to find! This is exactly the emotional struggle I've been going through. I actually tripped over it this evening as I was reading up on DCIS because a friend had said 'I thought it wasn't really cancer - sort of pre-cancer' and it really threw me for some reason. I guess after a year of stress, multiple biopsies, a mx with DIEP, a second op for additional recon and hernia type support, and still tx to look forward to, I had a mild panic about what if it wasn't really cancer? I mean how silly could I be? But it has been like that. I have been on a little soapbox with everyone I know about getting their mammograms, but am uncomfortable joining the relay for life or the BC support group at my temple. I imagine that every single woman with BC stages 1-5 wishes hers had been caught when mine was and fully removed, so I am grateful, but am embarassed that maybe it seems like I've overreacted. Yes, even I can look at these opposing emotions and see that there is some seriously unresolved stuff in my head. I can't think of anything more wonderful than finding a bunch of other women who get the complexity of this situation :-)
Keep sharing - every little bit helps.
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A Survivor? Yes. I thought with my diagnosis of DCIS I could just get my BMX (prior diagnosis of LCIS and what looked like a large area of DCIS), get my reconstruction and then life would be business as usual..... Not so. Now, because of narrow margins I'm set to start radiation next month. Five days a week for six weeks. It might affect my reconstruction results. I'm exhausted now, how am I going to feel once the radiation really kicks in? I am depressed over things that I can't give a name to.
YES, I will have my life back. I will be put back together somewhat. My chances of losing this battle are very slim. But yet, I am forever changed. I miss my breasts even as imperfect as they were. Never will I look at things quite the same. Every day, I worry that now my daughters are at a higher risk. I am forever grateful that the cancer was caught at such an early stage. I pray for those that have a much more challenging fight than I'll ever have.
But yes....I am a survivor AND I am a fighter.
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I just joined this forum tonight having been recently diagnosed with DCIS. I will have a MX (I believe that is the correct shorthand for uni-lateral mastectomy?) on Aug. 10, with sentinal nerve biopsy. I plan on having TRAM flap reconstruction performed at the same time. The radiologist who did my SCNB was only able to extract samples from one of three areas in my breast so we won't know for sure until the mastectomy is performed. I am so happy to find this thread because I was having the same thoughts regarding joining a BC support group. I thought I might not belong in a support group because there would be women there who were so much worse off than I am. Women going through chemo & radiation, hair loss and nausea. Perhaps they would resent me? I mentioned this concern ~ this feeling of "unworthiness" to my cancer surgeon and her reply was: "Nancy, you have breast cancer. You are having a mastectomy."
I guess I'll go to the support group...
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Nancy -- welcome to the sisterhood no one wants to join (breast cancer). We are the lucky ones, where it was caught so early we don't have to go thru such debilitating treatments as the later-stage women. But good grief, it's still a cancer diagnosis and hard decisions have to be made, in order to avoid having it become something worse. I am 8 weeks post bilateral masectomy and I still sometimes have the thought hit me again full force: "Wow, I had my breasts removed. For an early-stage cancer, one that some people even call pre-cancer, what a drastic surgery!" I was thinking the other day, it's just so crazy...look at skin cancer for example. My Dad has been dealing with that for 20 years, and keeps having small areas removed from his back, his chest, his forehead, his nose. He has to stay on top of it and get everything checked out immediately. Otherwise it could turn deadly and kill him. But so far he has not been disfigured by it, no huge chunks of flesh have been removed. Well, with my diagnosis of DCIS, I never even got the chance to try having "just a little bit" removed. Even though it sounds like that should be the case, since it's Stage 0. Right?!?! But if I had gone with lumpectomy, 1/2 my breast would have been removed, that's not a "little bit". And then I would have had to do radiation/ Tamoxifen...and have recurrence rate of 15% within 15 years (I'm only 43). With my family history, I opted for the BMX...no further treatment needed, recurrence rate now down to as close to 0% as possible. I am happy with my decision...but unhappy I had to make the decision at all !
The support group I go to up here has been really great. The majority of women I have met there so far have had DCIS or Stage 1 -- and masectomies only. The couple other women I have met who are later stage and have had to do surgery plus chemo, etc., do not seem resentful of the rest of us. Just grateful to have a "safe place" to talk about stuff...I'm sure every group is different, so just try it out and if you don't feel comfortable, don't go again. You will always have the virtual support group of bco.org ! I have found this website incredibly helpful...better than therapy ! I wish I had found it when I was diagnosed, not 1 week after surgery. But just glad to have found it at all...
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Juliana51 -- I'm sorry to hear you have to start radiation treatments in a month. I can only imagine what you must be feeling. I can certainly understand your statement about "being depressed over things I can't put a name to" ! You thought the BMX and recon would be the end of this...just shows that even early-stage cancer is a complicated and indisidous beast...and that's why we have to do everything we can to fight it...and we get upset when other people want to dismiss it as Cancer-Lite.
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wow...I am so overwhelmed (in a good way) to find so much support and people who think the way I do when I started this thread...maybe it should be a sticky for others who are just starting out and have similar feelings.
Juliana, when you said you had narrow margins after your mx, did that mean that the cancer was all the way to edge of the removed tissue, like by the chest wall or near the edge of the breast? I am just curious as I have been told no further tx as long as everything they remove looks good (my bmx is tomorrow). I guess I just have to wait and see. the MRI was clear so that is good but the surgeon and his NP have both told me that sometimes DCIS won't show on the MRI so there could potentially be more in there that hasn't yet been seen.
I laid all my pretty bras out and took a picture of the group of them--I had bought a bunch of them just a few hours before I got the results of my biopsy--maybe I was trying to think positive lol.
I have a pink hat that says "cancer sucks"and I added a breast cancer ribbon to the charm bracelet tattoo I have on my ankle...I'm surviving this $h*# no matter that it's stage 0. Because if I sat and did nothing, it WOULD turn into something worse.
Thoughts and bright blessings to all my sisters in the DCIS club and BC club in general. I am SO GLAD I found this website.
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DeeLJ- I had a less than 1mm margin close to my skin so they want to make doubly sure that there isn't anything left lurking that could come back, additionally they said my DCIS was somewhat large. I am one of the unlucky ones that had to have radiation in spite of the having the BMX - I believe it is more rare than common for that to happen.
I am sure that your BMX will go well and soon you'll be on your way! Best wishes to you tomorrow. Are you also doing reconstruction? You will do well, I did not find the recovery from the actual BMX to be very painful so I hope the same for you. Let us know how you are and feel free to PM anytime.
Juls
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DeeLJ: your BMX is tomorrow ?!?! Sending you positive thoughts and healing energy ! I am 8 weeks post op and I'm telling you, it's going to be OK...it is rough going the first 10 days or so (at least that's how it was for me, I had immediate recon -- one-step with saline implants/alloderm sling) and then, barring complications, things just start improving. In the immediate aftermath of the BMX, just tell yourself you can get thru 5 more minutes...that it won't always be like this...the cancer has been removed and now all energy goes toward healing...of course you are surviving this...it is caught in early stage and you are having a drastic surgery to remove all the cancer cells (that's the plan, anyway). The sticker I have on my cancer binder is: "cancer touched my boob...and I kicked it's ass !" YES ! We are not even giving it a SNOWBALLS CHANCE IN HELL to do anything worse to us ! HUGS !!
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DeeLJ -- also, did you take a picture of your boobs? I had my husband take a close-up photo (no face) of my originals the day before surgery. Then he took a photo of the foobs, one month later. Will do another at the 3-month mark -- same as my PS will do -- that's when my "final results" should be seen. I took these photos both for me and to be able to show any newbies at my support group...I was disappointed that no one had photos to share with me about what BMX with recon looked like.
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deelj - DCIS does not always show itself on MRI! It's such a sneaky thing. So you won't know your full final path until after your mast. Most women don't need rads after the mast....there's only a few of us that did. Good luck and hope your healing goes well.
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I also had a BMX, no reconstruction, for extensive DCIS in April. The anticipation of the emotional impact of losing my breasts was worse than the reality. Going breast free doesn't bother me. And I do feel a bit like a fraud if I tout credentials as a bc survivor, since it was so early, even if widespread. That being said, I am continuing to have problems - chest endema on the side where they took lymph nodes, pain in my chest, arm and shoulder. People ask me how I'm doing, and I say ok, because I'm tired of telling the truth - that I have discomfort that is continuing.
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Jen-- yup we took pictures and saved them. more for my husband than for me, I think. I've had the girls for 30 years, an am quite familair with them lol. I am not having immediate recon...getting tissue expanders placed; the doc said sometimes he uses alloderm but it has to do with the muscle if its needed or not..
Juls, thanks so much! I KNOW I am going to do well, but its the anticipation of the surgery that has my stomach in knots. I hate waiting and being a nurse..well, I am not a very good patient even tho I try.
thanks to everyone. I'll be back in a few days.
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OK I'm back. Yeah this is major surgery....Glad its over and now its just onwards towards the foobs...
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DeeLJ -- thanks for posting so soon after your surgery ! Don't skimp on your pain pills -- stay ahead of the pain -- and just take it one day at a time. Gentle hugs to you !
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DeeLJ, I second all of your thoughts. I too have felt like I don't deserve the same credit as my friends who've endured chemo, etc. We are blessed to have had it so relatively easy compared to so many others struggling in a fight for their survival. But still, you are surviving something so many women do not ever have to face so don't forget that. (Especially the first few days after surgery, you definitely feel more like a survivor.) Happy healing.
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Jen42 - I have pictures of my old ones and knew I would need them someday down the road. Actually turned out to be helpful immediately as I noticed one hung significantly lower than the other and I'd never known before - made going for surgery a tiny bit easier. They will be better than ever before and I will be able to prove it even if only to myself and husband.
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Kristi - that is a positive thing to be able to take from this experience...not to be a Debbie Downer, but I had opposite happen. When my PS did all the measurements at my consultation, he sat back and said, "this rarely happens, but your breasts are perfectly symmetrical no matter which way I measure!" I could barely hold back tears as I replied, "what a shame they have to go, then." Who knew? My whole adult life I had small but PERFECT breasts ! Boy, did I take them for granted ! Maybe I should have entered some wet t-shirt contests while I still could ! (ha ha)
If you don't laugh at some of this stuff...you'll cry...
I wish you great reconstruction results !!
DeeLJ -- More healing thoughts coming your way!!
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I don't even know where to begin with this subject, I remember after my BMX 9 months ago, the doctor telling me my margins were good,and I asked her so does that mean I am cancer free, and she said that I would never be free of cancer,,meaning that It would always play a roll in my life now and she was brutally honest which I appreciated it. Survivor yes, cancer is cancer, be it a small tiny little spot or a large area or any shape or form. It is cancer and the treatments are all different but each of us deals with it in our own way. In the last nine months I have had to learn to deal with it and move on as best as I can. It started out as a small thing, just a tiny little area on a mamagram, but it has forever changed my life and even though It was Just DCIS, it was a big deal to me and my family. I have had a tremendous amount of support from family and co-workers and friends. I hope that all of you, no matter what type or size or grade of cancer you have always cling to who you are and the strength that you have inside of you.
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Kathy..how did you make the decision to take Tamoxifen..I have an appointment with the onc on Aug 11 and want to have my own decision made before I see her.
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