Uni or Bi
hi all!
I am VERY new to this site and so very grateful my hubby found it. I am 36 yrs old with 3 year old twins and a 7 year old who is high functioning autistic. I was diagnosed with lobular cancer in my left breast. Stage 1 B or maybe 2. I have had two lumps biospies twice and three others also biospies all from left breast and all malignant. Originally thought a lumpectomy and radiation but after MRI and add'l biospies they have suggested a bilateral. Sorry I don't know all abbreviations. I have extremely dense Breast tissue which they say makes me hard to follow. My right breast is completely clear as of 4/18. Nada while my left has ten spots. ER+, PR+, her 2 negative but still waiting on fifth lump receptors. Gene testing is negative but they think there is an unidentified gene mutation perhaps. My surgery is scheduled for 5/11 and I currently have it as a bi so docs schedules blocked off for longest time but can change it to a uni.
I need help! I am literally going crazy trying to decide. While it is appealing to just get it over with and not have to worry about being closely monitored I am having a very very hard time with losing my breasts, especially now that they can no longer perform a nipple sparing on left due to recent findings from latest Biopsy. I have also talked to two gals who just went through this as a bi surgery and they terrorize me of the pain and how awful it hurts and looks even a year later. My big thing is that with a uni I still have one piece of me (I know it sounds pathetic) and maybe an easier time post surgery because I could use my right arm to hug my kids or do whatever. I'm really upset about losing ability to pick up and hold my kids for a while and at the thought of no activity with them as I am very active. My gut has been to preserve as much as possible and I always try to follow my gut but I also feel selfish if my family has to worry about this and I don't want to worry about MRI'a and ultrasounds and if something is brewing either. But once it is done, it is done. But if cancer does come back in my right breast and I have to do chemo and surgery again I will be mad at myself. I just keep going back and forth and will be forever grateful on any advice or anything you would be willing to share with me anything at all thank you so much and I am in awe of everyone on here. You are giving me hope and courage
Comments
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hi kluga5!
I am in the same boat as you. I'm 41 with 3 kids, 12, 10 and 7 and very new to this site as well. Absolutely no BC on either side. I have been DX with DCIS in right breast. it is too big (almost covers the entire breast all the way from the back to the nipple) so my recommendation is a mastectomy with immediate reconstruction. Nothing in the left as of now. ER+ and PR+ and I'm still waiting on the gene testing and my surgeons have scheduled a bilateral (May 12th) for time reasons but i can change my mind anytime they said. My oncologist surgeon is great and I fill very empowered with it being my decision and she didn't make me feel at all bad about leaning one way or another. However my plastic surgeon was very different. He feels it might be too drastic to take a healthy breast without being in someone's family history or gene positive but would stand behind my decision and he is known to be a fantasic surgeon and very well know for breast reconstruction here in Houston so i'm back to what do i do??? He did not say this per say but you could tell his side on this.
Also, I'm having the DIEP flag reconstruction and I have Crohn's disease and with my immune system and the meds for the Crohn's the DIEP flap is better for me. However, i'm leaning towards a bi instead of a uni but i'm as well going crazy trying to decide! I've had some issues with Crohn's and a surgery and i'm just frankly over doctors and medications and want to enjoy life again. I do worry and i'm scared i would worry about the other breast too much and with the DIEP flap once you take from belly if it should come back on other side you can not take from belly again. I do realize even having a bi doesn't mean you would never worry again but something inside is telling me to do both and my BS said it best...women who want a bi and get it are happy with their decision and women who want a uni and get it are happy but the women who feel a certain way but decide against it regret it so this should be MY decision and she will back me no matter what.
seeking any advice or anything you would be willing to share as well...many thanks to all of you on this site...it's a blessing to share and be heard
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I'm so sorry you are both here. I can relate a lot to you, I was 40 with a 3 and 5 year old (at the time) and needed a uni due to multifocal idc and extensive dcis...I decided on a bilateral. It was an agonizing decision, there is no good choice really! On the other hand, I'm sure you'll find relief when the choice is made and the right choice is what is right for you. Sending you good thoughts.
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It's a very difficult and personal decision, usually with no clearcut answers.
While my breast surgeon, a woman, supported either lumpectomy or mastectomy for me, when I asked her woman to woman what she would do, with no hesitation she said mx. I struggled with the uni vs the double too, but she said I'd be happier with the results of the double after reconstruction because they would be more symmetrical. I did DIEP recon. Not a walk in the park, but I got through it. I had two revisions and may still get some fat grafting for a flat spot. It's a long process.
I don't think a uni or a double is going to make much difference in your ability to hold or hug your kids. You'll be able to use your arms. You'll have drains and want to watch lifting either way.
I think lobular cancer is considered kind of sneaky. Harder to detect. I suppose that combined with dense tissue may be a reason to consider taking both, but that is a difficult decision to make when you are so young. So sorry. It is a loss. I try to remind myself that there were much worse things to lose like a limb or my sight.
Good luck to all facing difficult decisions.
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i did not find the BMX that painful. Only took tyleol for a day. its the recon that can be painful
The benefit of both is choice in size of forms if you opt not to have reconstruction. I belong to a facebook group called flat and fabulous and there is a lot of shRing there. Most of the time i go braless unless the clothes need sonething to fill me out
Have sensation over my chest except on the scars. Wouldnt if id had reconFor me it was the emotional trauma of stressing over more mammos with a sneaky type of BC
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hi there! So sorry we are meeting this way. I hope for us to stay in touch as our Sx is one day apart as of now. I still can't decide and just want no regrets, right. Sigh. Wishing u some peace and clarity.
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This was a tough decision for me too. I ultimately ended up doing a skin sparing UMX. All my genetic testing (incl BRCA 1&2) came back negative. I had to have an MX because I was multifocal. For me, I didn't see a reason to remove a healthy breast. I also wanted to maintain feeling in my left breast. It was easier to have the UMX because I was able to use my left arm to carry, lift and reach for things in the cabinet. The downside to getting the UMX is that my left breast is very dense. My gyn recommended an ultrasound last year and this year after my mammogram just to make sure there isn't anything hiding. Overall I don't regret getting the UMX. I went smaller on the right so I had a reduction on the left. You have to decide on whatever helps you sleep at night. There isn't anything to say that you couldn't go back and do an MX on the other side down the road if you aren't comfortable. Not idea but it's a possibility. Good luck on whatever you decide!
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Hi Kluga5, although I was much older at the time of diagnosis - I was 54 - it was still hard for me to decide whether to have both breasts removed or just the one that had two tiny tumors confirmed. I decided to have BMX and am very very happy I made this decision. Like you I had extremely dense breasts that make imaging very unreliable. Surgical pathology found very extensive LCIS in the 'healthy' breast that would have turned into an invasive cancer sooner or later.
If I understand correctly your medical team recommend BMX. I would trust them - nowadays, they do not recommend BMX without having a good reason for it. Concerns about not being able to use arms or lift anything are overrated. With proper care and exercise you should be back to normal rather quickly. You are very young and I would do as much as possible to get rid of cancer now and reduce the risks of it coming back in the future.
Best.
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Editing to add: go for a second opinion. Ask for explanations. Ask the doc what s(he) would do if s(he) were in your shoes. Ask the nurses. I think you might get good responses if you phrase it that way.
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Hi Kluga5! yes we should diff keep in touch and esp since are surgeries are 1 day apart! i'm still waiting on gene testing to come back but i realize it's pretty uncommon to get a positive result. so i'm talking to alot of people and trying to research and get as much info as i can. good luck to you and i look forward to hearing more from you!
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hi blessedby3!
How r u doing? I lost it today. I was literally doing so well and chugging along getting work stuff prepared for my absence and the long info doc on my kids for while I am gone and lost it. I sound pathetic but I really don't want to make this decision and I really want to keep one of my breasts. I am so terrified of having to see my chest without my breasts. Do u mind me asking what sources you are using for your research? I feel so tapped out. Everyone has their opinions and most feel bi but they don't have to live with it. But am I selfish if I keep my right one and have to go for stressful check ups every six months? Hoping you are NoT feeling the same but grateful for your communication
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I'm still struggling with whether to do prophylactic mastectomy nearly 10 months on from uni mastectomy. I've finally ruled out reconstruction having lived with one side flat for this time and using a prosthetic which I don't find too bad. My BS has recommended proph. mastectomy but now I'm thinking I will stick to the 6 monthly surveillance for a while anyway. If you can get MRI annually it will give you a pretty accurate view of the breast. Not so mammogram and ultrasound unfortunately for those of us with ILC. Please don't feel pressured into reconstruction by your doctors or others, it seems to be a huge commitment from what I read on this site.
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Hi Kluga5,
I'm so sorry to hear you had a rough day yesterday! I did too..what was up with Thursday, april 28th?? glad it's over!! today is a new day...thats what i keep telling myself.
I got the call that they might have to change my surgery date from the 12th to the 19th...I"M like nooooo..i have everything scheduled and won't know for sure until next tuesday! urggg
The research i've done is just on the internet...i'm on the computer almost every night til late...and i actually have some friends that have been through this so i've had alot of people to talk to about it face to face and actually seen the plastic surgeons work on a friend! i'm blessed that way. also, i just know me...i worry and have anxiety i'm so tired of tests and surgeries and something is telling me deep inside to do a bilateral and i've been told you usually don't regret your decision if it's YOUR choice! you have to listen to your gut no matter what...my advice to you is whatever keeps popping in your head and how you see yourself after is what you should do. I think if you let other people make your decision for you and it's really not what you really want to do you might not be happy afterwards. and please don't ever think you are selfish..EVER! If you don't mind going for check ups and wouldn't worry yourself sick what the outcome will be every 6 months then i would do one. I know me and i would be sick with worry so that's why i am leaning towards a BMX. only you know you and how you would handle that. I hope i've helped just a little..i'll keep you posted and please do the same!
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ugh! So sorry to hear that the may change your surgery date! My fingers and toes are crossed for you! The editing just stinks!!!!!! I had a long appointment with my breast surgeon today as my pre op and I think I'm doing the BMX. I really would like to save my "good" Brest but I don't want to go through any of this again. Ever! Wishing you some solace in however you can find it. Mine is laying on the floor next and in between my twins beds or in bed with my older son and reminding myself that they are what's important. Not my stupid breasts. Easier said than done for me but I want to be here for them even if it is with foobs. Wishing I could reach thru this phone and give u a hug and have a cry with you.
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hi there!
i hope you have peace with your decision and that it's is your decision!
What did they do at your pre-op appt? I have mine next week.
hugs!!!
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not there yet regarding being at peace with my decision. Not sure I ever will be but it is what I have to do so I never have to deal with this again (hopefully). We just talked about my situation, the type of Incision, what he would be doing and my lymph nodes and then why he recommends a BMX and then post op stuff such as that I will have exercises given to me and then we discussed the dreaded chemo. I had a lot of questions for him which seemed to be the main reason for the appt but I walked out of there knowing I would be ok and was in excellent hands.
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I would like to keep in touch with you ladies to see if you are happy with your choices of UMX or BMX. I have gone through chemo, left mastectomy and lymph nodes and am getting ready for radiation on left side. I am at MD Anderson. I will tell you that they thought I had IDC in 3 spots on the left breast- 7 cm seen on MRI. After surgery, the pathology found that it was actually ILC of 12 cm one spot also found LCIS. The original radiologist thought it was all one tumor at the biopsy, but it couldn't be seen until it was removed. This makes me worried that I could have cancer on other side and it's just not being seen. Surgeon does not recommend prophylactic MX on right side, but if I want it, it can be done with reconstruction one year after radiation. So I have some time to decide. I do not have my prosthesis yet, so I will see how I feel with that. Just wearing baggy shirts in the meantime.
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Good luck tomorrow Kluga5...i'm pretty freaked out and can't seem to calm down! My mom and hubs tell me it's anxiety! just want tomorrow to get here and be done and fast forward 6 weeks! LOL
will check in when i can!
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hello!!!! I have thought of you every day but this is the first day I was brave enough to get back on this forum. I had the BMX with reconstruction (prophalacytic) on May 11. They found 6 primaries of Lobular plus LCIS plus DCIS so they said I did the right thing by taking nipple of left and takin right breast. I had to stop the pain meds and Advil a few days ago due to stomach issues and vomiting. Been sick with either stomach virus. Anyway it has been good and bad moments, good and bad days etc yesterday was a bad day. I looked at myself for the first time with a makeup mirror and I was de devastatingly hard. And then I feel enormous guilt for being upset because they got the cancer so I should be happy and feel lucky (which I do) but I don't feel like me and I certainly don't look like me. I've gained weight and am swollen and I don't like not being able to drive or go play with the kids etc. anyway enough whining.
I truly just wanted to see how you were doing and how everything went and to let you know I have been thinking of you. All the best.
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hi there. Such a head decision and I wasn't sure up until the moment they wheeled me into the OR. Anyway I had lobular and know LCIS on left and decided to take both based on recommendations of a few of my doctors. Post op pathology found 6 primaries plus DCIS and LCIS in left so said sis right thing in taking right. I am gene negative but considered young in cancer world plus family history this the recommendation for BMX. i went to sloan Kettering for a second opinion one week before my Sx and it was awful. I had made my mind and heart around the BMX and the very cold and difficult (world renowned) doctor said to do only a uni. It was awful and made me so anxious and sad. But then once I was out of there and thinking of the facts and how I wanted to live the rest of my life I was ok w BMX. ii have very dense breast tissue so would have lots of MRI in my future. The most helpful thing that was said to me was that only you know the right answer and it will be right. and from me - YOU have to do whatever lets your heart feel free and let's you live and move forward. Happy to chat via PM best and peaceful thoughts
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