Unilateral mastectomy & reconstruction
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Jeanie-you and I have the same diagnosis date. I was diagnosed one year ago today. Have come a long way in a year-chemo, rads, three surgeries so far.....still a ways to go. But at least cancer is out and next, we start the rebuilding stage. Ready to put it all behind me for sure.
Frostecat-ugh.....that wait would be bugging me. I would ask to get put on their "call me if anyone cancels list" at the least. Try not to worry.
Fourminor-it is so hard not to second guess our decisions. All we can do is research as best we can, ask a lot of questions to your drs-I take notepads full, and follow our gut.
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i was wondering if any of you ladies has joined a BC support group and if so has it helped?,, I am sooo glad I found this site,, cause i can vent here and we all are kind of familiar with each of our treatments,,,,thanks
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I was surprised not to find any around me in Brooklyn actually. But I sort of like it here better because its just there whenever you need it and you can drop in and out. My monthly surgery board has gotten so active that its getting hard to follow but I feel like this board is home base.
Here's a funny thing i thought about today. You know how as you get older you wake up to decolletage wrinkles from your breasts pressed together while you are sleeping (particularly on your side)?
I don't get those anymore! My only boob is on the only side I can sleep on and the foob stays put. My decolletage is smooth!
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Fourminor, finally, you have found the silver lining to the cloud for us. LOL
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I have not found bc support group yet, but I do know a few ladies from church and work who have history of bc. They are kind of like my support group. I'm glad to have found this forum though. Just like Fourminor said, you can just drop in and out whenever with this community at your own convenience. Fourminor, you r funny. I have never had the problem. The only time i have ever had cleavage was when I was pregnant or breastfeeding.
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Frostecat - hope you get in sooner - waiting is tough! Fourminor - you have to make the best decision from your gut that you can with the information you have at the time - don't second guess what you did in the past. Just concentrate on what your next best step is. I still wonder if I should have just had the lumpectomy instead of the full uni mx, but in the long run, I think it worked out better. I feel lucky after reading about what you all are going through, since so far I have not had to have chemo or radiation. I am doing well from my replacement/lift surgery and starting to get a little energy back ( 12 days post surgery). I get up in the morning and do some cleaning project and then it wipes me out for the rest of the day! But at least I have that initial burst now! So I am going to spend my resting time thinking good thoughts for those of you who are having trouble with your recovery/treatments. Maybe all of our good thoughts together will make good things happen!
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Hi, thanks for the good wishes. I had exchange surgery (implant afte rMX right and augment left) on Nov. 14 and start to feel human again. I am off painkillers, and it was not as terrible as I thought it would be. Trying to enjoy my days at home before going back to work.
Have a good week,
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Summerwheat - Glad to hear all went well! A week will make a big difference, and two will be even better. Just take it slow!
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Summer - glad to hear you are on the mend.
The BS had a cancellation and was able to see me this morning. She not only felt but saw the lump that I had found. I asked if she would be able to tell from the ultrasound what it is, and she said she can get a pretty good idea, and if it appeared to be a solid mass she wouldn't hesitate to put a needle in it right then and there. She used the ultrasound and said it appeared to be fat necrosis - whew!
But I'm not out of the woods yet, she asked me to come back in one month to take a look at it again. She explained that when you have fat grafting done, that once the blood supply is starting to cut off from the fat it can snap into the shape of a ball which is what appears to have happened. She told me after it "dies" it liquifies and looks like butter when removed.
She said I did the right thing by coming in to have it checked out. I Have a weight lifted off my shoulders, for now, then she also handed me my orders for a mammogram ... arghh!!
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I AM SO HAPPY. Great news Frostecat!
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great news Frostecat!!!!!! i almost cried when they told me time for my mammo but was able to put it off due( to my last surgery,as I am still healing,,) at least until January....hang in there everyone,,,,healing hugz to all....J
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Congratulations Frostecat! That is just the best news. Happydance!
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Wonderful news. Happy for you Frostecat. You did not need that heavy burden on the shoulder.
Summerwheat, enjoy your time off.
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can someone explain to me what the "oncotype number " means and how do they get that number?...if I have ripples in my implant does the fat grafting fix that? my PS hasnt said anything about fat grafting.. thank you all.....
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Oncotype is a genetic analysis of your tumor cells that predicts the risk of recurrence rate after 10 years and the probable benefit of chemotherapy. It is designed for node negative stage 1 or 2 ER positive Her2 negative tumors and also assumes the patient will take Tamoxifen for 5 years.
The scores range from 0-100. Less than 18 means chemo is likely not going to add benefit. Over 30, chemo will add benefit. The problem is 40 % of women get a score between these numbers and there isn't enough clinical information at this point to know for sure what they should do.
I am all over the place with this. My score was 20, just over the line. My onc basically could not give me a strong recommendation either way, except that since I am younger she said most younger women do it because our tumors may be more biologically aggressive and we have more time to have a recurrence.
Though as I'm digging around I see others have been told all kinds of things at this range and if the doctors don't know what to tell you, its really hard to feel confident about anything. In many ways I feel this is actually worse than trying to decide whether to remove one or both breasts because the stakes are higher if you make the wrong call. But there are serious side effects to this stuff which is why the wrong call could be in either direction.
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Fourminor - arghhh I feel for you. This all has to be weighing heavy on your mind. If I put myself in your shoes, man, I don't know which way I would go either. You're probably hoping someone could just make the decision for you, but unfortunately as we all know to well, it usually does come down to us. It sounds like you are doing your research to make the best informed decision that you possibly can.
Jeannie - Didn't you have an oncotype test done? I thought it was pretty standard procedure if you fall into the parameters that fourminor pointed out.
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Good news Frostecat! i am currently nursing an infection on reduction side, three weeks post surgery. on third day of antibiotics, and applying bacitracin and vaseline. the rest of the steristrips finally wore off, and i'm starting to feel better now, thank God. gentle hugs to all.
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I have gone to local BC support group - run by a social worker who is very sweet - she had BC twice,,, it is 1 1/2 hrs - 2 hrs once a month and at first after DX was nice to connect face to face with women nearby who have BC - I found first meeting very helpful, next month ok - missed a month and went this month and was ok - I actually find the comments and tips and support on here better.... and yes easier to fit into the busy lives everyone has - I may have found support group more helpful locally if the women in it maybe also had Mastectomies - most have had lump/rads... but I do like knowing I can go if I can fit into end my day...0 -
Fourminor, I can relate. I can't take anti-estrogen for prevention as I am ER/PR-. I'm HER2-positive. HER2-positive breast cancers tend to grow faster and are more likely to spread and come back compared to HER2-negative breast cancers. Because the cancer cells were microinvasive, treatment with Herceptin, which can cause heart failure and pulmonary toxicity among other side effects, is not warranted. The benefit of receiving Herceptin does not outweigh the risks of side effects. So, I'm left with no protections. On the one side I am grateful I don't have to take any thing, but on the other side I question if my Oncologist is aggressive enough in treating me.
Scary, sorry to hear about the infection but glad to hear that you are feeling better. Are you pretty even? How is your neck and back
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I am also her 2+ I was on Herceptin every 3 weeks for a year then 6 months after stopping Herceptin It spread to my spine
I immediately went to a new oncologist this was 2012 did cyber knife for spine followed by 4 rounds chemo and Herceptin again. I am still on Herceptin have an echo every 3 months
I have IBC which is very aggressive and was stage 3 when diagnosed
Everyone is different but I feel Herceptin has kept me here it did not work the first time but appears to be now...fingers crossed
Wishing you all the best
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Loveroflife: yes that did help me,,, I have a website that I can go to to check all of my lab,pathology reports through the Cancer Center, I just read everything on the reports and find nothing that tells me an Onco#.I am all of the things that are required for the test, I aslo found that I am HER2-. My Onc DR has me on the anastrozale for 5 years as of this point. I go back to see him January 12th, there was NO mention of Chemo or Radiation at all. He has told me that we caught this very early due to it was microcalcifications and No tumors. and I had a great outlook for 100% recovery with no further treatment than the pill.
Frostecat: I am not sure if one was even done ,I plan on calling today to find that out.
Fourminor: I sure wish you didnt have to make this decision as none of the things we have to decide are easy at all. they are all life changing, My prayers are with you as you try to make the right choice for yourself.
Scary: I am glad you are feeling better, I am still trying to nurse my incision from my reduction as it is constantly irritated and beet red, My reduction was done in July, we cannot proceed any further until this heals, we are planning to put a small implant in on that side and my PS will be using the same incision...ouch....
Sparkle: I still cannot bring myself to talk to strangers(sometimes even family) about my Breast Cancer without crying. I cry most times when I read others stories and feel for all of us women that are enduring this nightmare. I dont think I can go to a support group and speak outloud or even come face to face with women in my area that are going through this also. It will be so difficult for me. I also cannot even go to my Cancer Center for my Drs appts without sitting in my car and crying for 20 minutes before I can leave and drive home.. so freakin emotional and sad. I use this site for my therapy and it helps trememdously for me. Sometimes I feel like since I didnt have to do chemo or radiation and lost one breast that I am very lucky and feel other women who are going through it wont think I fit in... silly I know right?
to summarize, I am not happy with my outcome so far, my implant has ripples,when my PS removed my skin under my arm there is almost like a "wing" going on behind my arm that doesnt stay inside my bra. maybe lipo might take care of that. my native breast incision isnt healing so well . I know it could be alot worse and I should be thankful that I dont have to go through chemo or radiation but I wish I could just have my own breast back, I think the women who have had to have a double MX are my heros cause I dont know how they did it,, my UNI was hard enough. I am truly upset over how MANY of us there are and how treatment is so different for each of us. we need to find a cure so my grandaughters and their daughter dont ever have to go through this.... ever!......
HEALING HUGZ TO ALL........... J
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Lovecat3, thank you for sharing. I m praying that the Herceptin continues to help your body fight this terrible IBC. Hug to you.
Jeanie, I wanted to cry and give you a hug after reading your post to Sparkle.
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thanks Loveroflife:)) i cried when i went back and re read my own post,,, silly me... must be having one of those days today,,,,ugh! I always felt that crying was a sign of weakness, but I know HOW strong we ALL are, and I also know it is because everyone expects us to be.I lost my only son in 1996 due to a car accident, he was 21,sometimes I feel like losing my Breast is just as traumatic,,,,I cant fix it or make it go back to normal,I know what strong is but this takes me to my knees and takes my breath away some days,Every day is a constant reminder when we get up and look in the mirror, or take a shower, or get dressed, I lost my own mom to breast cancer in 1971 when I was 14, and I saw her scar,,,, we have come a long way since then but it not far enough! Keep praying for A cure soon....... healing hugs to all..... J
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Jeanie,
I have only one boy and he means everything to me and when I see any parent lose a child I completely break down because it seems to me the one heartbreak that would never heal. It might just rank as my highest fear of all. I am so sorry about what happened to your son and your family.
The reality is I think this breast cancer came from having my boy since I had completed my radiation in the spring of 2009--got pregnant literally weeks after my mammo was cleared 3 months later, had a miscarriage two days before Christmas, eloped and got married and was pregnant again by April 2010 and had my son when I was 43 without any complications. Realizing time was short I thought about having another one because for about a year afterwards my cycle was very strong and regular and I knew it would be my last chance, although I was not feeling strongly about it. My husband really didn't want another one and now with this, the show is shut down and I am generally just grateful that i was able to have him, but I realize that being pregnant like that right after RT probably fueled this tumor.
Still i have no regret. Last night he tapped my tissue expander through my night shirt and then squeezed my good boob and asked me if my boobie was fixed now if I was still having pain (he is 3!!). I was so touched that he still thinks about me and i am glad I kept the explanation simple.
Its all crappy. PS today told me I just need one more fill and depending on chemo choice could do exchange in February or would have to wait unit 2 months after chemo. He said he would not bother to lift my right breast as although he could, it would be a lot of surgery for a little benefit that would not last forever anyway. In the end, he said, you will still need to wear a bra. He said if you twist my arm I'd do it, but I don't think its worth it. Immediately I thought of you.
He also said it may be possible to do some fat grafting where my skin is thin on my chest, but the huge divot from the SNB is another no touch for him. He said once you go in there and muck around you could wind up with lymphedema.
Another reason i don't want to do chemo. Exchange in February, or July.
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Fourminor, i am happy you are blessed with your son, they are so cute at that age, our 5 yr old granddaughter lives with us and she is such a joy to have such innocence around, although the temper tantrums and whining are another story..lol.. I am not unhappy with my lift, just trying to get incision healed so we can continue.... it has made a big difference as far as symmetry,,,, although I have not had any procedures or surgeries since October and I feel great,,, almost normal again with some discomfort, but back to housework and cooking and cleaning and being in charge where my dishes get put away...lol...I am not even sure anymore that I want to go through another surgery to put a small implant in.....hmmmm.. makes me think about it twice,, with clothes on you cant tell anything, and as far as with clothes off.... well they wont ever be perfect so I might rethink this all,, if I decide not to have it done I will be finished and that would be wonderful.. just would need my nipple tattoo.....but I would be able to go back to work which is something I miss a lot,, not to mention the money, have been out of work for 1 yr now..... I will be praying for you and keep you in my thoughts and hope you dont have to do Chemo,,,,, Healing Hugz my friend,,,,,,,,J
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Fourminor, what a sweetheart your boy is-so caring and loving. I'm will pray for you for wisdom to make the right decision.
Jeanie, bless your heart. You have been through many trials. I could sense that you are a very compassionate woman when I read your posts. Now it makes sense to me.
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thanks Loveroflife...:))
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thanks ladies, yes i feel more even now, but i am frustrated because i have to wait to lift arms above head, due to healing, etc. i really want to start exercising the way i want to get in the shape i want to. straight cardio gets boring after awhile, and even that is slowed down now because of on/off fever.
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Jeanie,, you brought tears to my eyes with your post, totally okay,, I know his sounds crazy but my very spiritual counselor, who is a 2 time creast cancer survivor, age 74,, mother of 3, grandmother of four,,, her take on breast cancer is that it stems from a severe wound to the heart (the breasts are above the heart chakra),,, could be true,,, curious as many of us who have gotten BC are sensitive types, and I know I had a huge wound to my heart a few times btwn 1998 & now, they report can take at least 7 yrs for a tumor to be shown/visable on a mammo or ultrasound,,, so could be growing that long before detected...
part of me wonders too if the LIFT is even wise, I don't want the lift on natural side to look worse then a droopy breast I have now nor create any infection or scar tissue...
crying is good - it is good to get it out - and I know how you feel too about feeling you should be feeling lucky that able to avoid chemo and rads,, me too - I feel thankful I did not need those but it bothers me when people who never have had anything say oh you are stage 1, that is so treatable - they brush it off like I got off easy! NO, I am 43, I have many years ahead hopefully, but will have to worry for many moons about it - that is not getting off easy!!! all of us have many things to face, it also is financially expensive to miss work, to go for tests, appts, follow ups - use your time off to handle this, that isn't vacation!!! that is sad, taking time off for surgery is NO vacation believe us, taking medication to control anxiety, mood, sleep because we need it - NOT fun! all of THIS is a lot of energy to try to resume a "new normal" life - we all deserve a break,
be kind to yourself,, celebrate each and every small accomplishment - even if just being able to put on a bra and wear it for 8 hrs! even if just able to look in the mirror and say - this new body is not too bad,, learn to love it, small steps, take a few small steps in positive direction everyday, be KIND to yourself - this is quite a diagnosis to have. my saying I try to think of when feeling oh I am so tired of this all - I can, I will & I want to! do better everyday, be stronger everyday, love life & leave a little sparkle where ever you may go,,, try to add sparkle to your life, find things to do that make you feel peaceful,,, our worlds have been turned upside down, and picking up the pieces, getting through treatment, surgery, healing, follow ups, etc is a long road, thinking of all of you ladies,,
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