I am soooo tired of hearing "Its up to you!" I turn to the brains trust here to give me constructive advice about a problem that I have to ( or want to is nearer the truth) address. I have been through the (L) mastectomy followed by Chemo and Radiotherapy (oh the horrors!! :) ) I want to hear about what you did or didn't do, whether it was worth it or not and pro's and cons of having a second mastectomy . I have spoken with so many people including GP's and surgeons, family and friends. I even had a family friend, a recent graduant from Uni with Counselling Diploma start to counsel me...and they ALL said...well really its up to you!! I KNOW its up to me....arggghhh!! :) But no one could give me personal experiences and expectations....just second and third hand stories - you know the sort...friends of friends, mothers/sister/aunt or niece of friend three times removed..:) I had a lumpectomy 25 years ago in (R) breast - it was encapsulated...no further treatment given. I had bilateral lumpectomy last March - the right was benign and the left breast went for the mastectomy. I have been told my problem is NOT in the genes so I have no reason Health wise to have it removed. It is purely psychological (and up to me!! :) ) I will of course be obliged to have regular mammograms :s and oncology follow-ups. Breasts are for feeding babies and giving someone else a thrill!! At 68 I am over both! I haven't got into the habit of wearing prosthetic bra yet because of radiation burns (and infection!!) that took ages to heal and of course this horrid hot sticky summer heat! I have worn it a couple of times and I feel so lopsided lol I know comfort will come with practise and further fittings. I have looked at myself in a mirror and thought about "To do or not to do!" Does dressing become easier, buying clothes, wearing swimwear ? Are you sorry it was done? Regret not having it done? I think a lot of this is to make me think about it as I wrote....didn't help - lol - I still don't know what to think about to help me make a decision. And please....don't tell me "Its up to you" :p <3

Hi there @Scorpio101. I was diagnosed when I was 58 and had cancer and one node on the left side. It was multifocal stage three grade three triple positive. So, caught at a fairly late stage, but as least not yet metastisied On the right side, they found "abnormal geography" and wanted to do more tests...biopsies and so on. I said "forget it, just chop both off" for much the same reasons as you said. They had been my pride and joy in my youth, had fed my babies and had provided much entertainment to my husband and myself for decades, but now they had to go...both. My medical team tried to talk me out of it, mentioning "overkill" and "unnecessary surgery" Increased risk of lymphodema in the right arm ( the so far unaffected side". They assured me that I would be very closely monitored and a close watch would be kept on the right breast, assuming the further tests were negative for cancer.I thought about it, and then replied using a story ( as is my way). I said the following. "If you lived next door to a man who you thought was a very friendly and trustworthy person fpr years, and then found out that he was a sex offender, would you still feel comfortable living next door to him? Especially if he could get easy access to your home? Well that was how I saw my right breast. A threat. Only a potential threat, but a threat no less. No matter how the police may tell me that this man had received therapy, and was also wearing a tracking bracelet around his ankle, and was required to report to his parole officer each week...that is...he is being very closely monitored and we are keeping a very close eye on him...." (sound familiar?)...would you still be happy for him to live in your shadow? No bloody way!!! Well, thats how threatened I am about this potential problem...off with it". Well, that turned their heads completely, and they said they would do as I wanted. After doing six months of chemo, I had both chopped off, and in the right breast were what was termed pre cancerous cells. No malignant, but of the type that have a strong tendency to go bad. I have not regretted my decision at all. I have not had any reconstruction and wear my prosthesis only when going out. I don't wear them for swimming either, just wear a loose top over my cossie.

My advice as a two time loser of the boobie prize; if you don't think you can trust that tit, you are probably better off without it. MXX

Kmakm Yes just flat chested....haven't considered any sort of reconstruction at all. Once the scars have settled down the track I will see if any adjustment is necessary but seriously who is going to see them except me..:) Thanks Alljay I love your analogy and makes perfect sense. Thanks Glemmis and Brightspace for your input. I should have added its not an immediate decision ...I see surgeon late May again, so I have a few months to think it over. I have been saying right from the start ...the other one is gone but some negativity from those around me was starting to creep in and I started doubting my decision. To be perfectly honest it isn't the surgery now or in the future that bothers me .....its the bloody mammograms!!!! I had one 25 years ago when the right breast lump was found....the B****ch of a technician walked out to do the picture and didn't come back for about 10 mins. ..seriously!! (I watched the wall clock! ) I was clamped tight because she got distracted elsewhere. I never had another one until I was literally nagged into it over a 3 month period by my GP....(there were no symptoms ..ie lump or tenderness ) So I am considering the surgery option because I hate lopside, it is a now useless appendage and I hate, loathe and detest mammograms due to bad experience. :D I so appreciate your input and thank you for answering me. <3 <3 <3

Ladies all, you are wonderful for sharing your thoughts and experiences and I love you for it. I cannot thank you enough. I haven't made my decision yet, although, I am swayed back to my original thoughts - Begone and and don't even think you can give me any more grief! :) I have a thousand thoughts going through my head at the moment, a lot of which I am laughing about!! But...Thank you all. Stay well <3 <3 <3

hi @Scorpio101 my 1st specialist only wanted to remove the left side and leave the right. I went back and argued my case about both ... he said no I said goodbye... got 2nd opinion at Westmead BC clinic they agree with my reasoning ... 1 surgery over and done with... No reconstruction wanted here. I was a 20EE never regretted my decision now over 6 yrs later

"Its up to you!!! " | BCNA Online Network

Shellshocked201
Member
6 years ago
Congratulations Scorpio101,
Wishing you a speedy recovery.
I haven’t commented on your post as I only had a partial mastectomy on one side.
Feeling so happy for you that a massive weight has lifted from your shoulders.

Sending gentle hugs xx
kmakm
Member
6 years ago
I get it. I had a double mastectomy because two others in my immediate family had had BC. Because I had to have a re-excision for margins discovered a 4cm dogleg of DCIS that hadn't shown up on any mammogram or ultrasound. Because my breasts were quite dense. And when it was done they found yet more occult DCIS. Six months later I found out I had a gene mutation that put me at a 66% chance of having BC. Even before that my risk of having another BC was 27%. Sad? Yes. Regret? Not one moment. K xox
Zoffiel
Member
6 years ago
I get it. If they are likely to kill you or send you mad, they need to in the bin. Good luck for the future. MXX
PV123
Member
6 years ago
Congratulations @Scorpio101, good to know that you are back home recovering.

I have had prophylactic bilateral mastectomies in February. Even though the recovery is hard ( I had seroma and a haematoma), I am really happy with my decision. I have dense breasts which made detection harder, I always needed a mammogram and an ultrasound. Even at the time of surgery, the radiologists were unsure if there were 2 tumours close to each other or just one. I originally had a lumpectomy with clear margins at the suggestion of the BC, but decided to have mastectomies to reduce my anxiety.
Scorpio101
Member
6 years ago
Dear ladies and self. Last time I posted I was in turmoil as to what to do re right breast.....to remove or not to remove..that was the question (sorry :D ) So I saw my surgeon in May 2019. I expressed my concerns but still wasn't sure...He said once again, the concern was all in my head, I was clear with expectation of no further problems. So I held back my decision and made an appointment for February this year to see him again.
When I was first diagnosed I was to have a lumpectomy (May18) ...but he didn't manage to take enough around it to make it a clear extraction...I know there is proper terminology but my brain doesn't want to work! So that is when I said lets go Radical ...take it away ..begone !! When pathology came back my doctor said...good thing we did that ..there was another small mass that wasn't seen on U/S or mammogram. Oh yay!! So other than horror of mammogram THAT little snippet has played on my mind for nearly 2 years..every waking moment! I had a mammogram on right last year ...all clear. Ok but that piece of information wouldn't leave my head. I had already been through 2 lumpectomies on right, one positive, one negative but i still couldn't make a definitive decision.

Until....I was talking to a friend about her experiences, comparing notes as one does and she said....oh I wonder if that is what happened to me, a missed mass not seen on any pictures. Why is that ? I ask. "Oh I have metastasis'. I also was give all clear, no further expected problems. " Read Catalyst moment!!
I came home and told my husband my mind is made up...I'm tired of thinking, worrying, stressing about what may or may not happen.

So I am today, 11 days post-op. Prophylactic (R) Mastectomy. Yes!! I told surgeon you are allowed to say when pathology results are in "I told you so!! " and the B did..lol But I have NOT thought about anything negative for nearly 2 weeks. I cried in Hospital and Nurses were concerned ...are you sad for decision, in pain etc?? No No No ...I cry because about 5 tonnes has been lifted from my shoulders...look they aren't up around my ears...I'm relaxed!!! Yes I still have a drain :( yes I cant throw my arms around too much at the moment but that's a temporary physical problem, yes I will now have to got get another prosthesis but I don't have to wear them all the time AND I will be evenly hung instead of one side perky and the other not quite there!! :) I will admit this Coronavirus is on my mind in my immuno suppressed post operative state, but I'm at home taking all the advised precautions (except I don't have 6 months supply of TP !! LOL )

Thank you to those who are listening, I needed to get this off my chest as sort of final closure. My wishes for good health and happiness go to you <3 <3 <3
Scorpio101
Member
7 years ago
Ladies all, you are wonderful for sharing your thoughts and experiences and I love you for it. I cannot thank you enough. I haven't made my decision yet, although, I am swayed back to my original thoughts - Begone and and don't even think you can give me any more grief! :) I have a thousand thoughts going through my head at the moment, a lot of which I am laughing about!! But...Thank you all. Stay well <3 <3 <3
Zoffiel
Member
7 years ago
My advice as a two time loser of the boobie prize; if you don't think you can trust that tit, you are probably better off without it. MXX
SoldierCrab
Member
7 years ago
hi @Scorpio101

my 1st specialist only wanted to remove the left side and leave the right.
I went back and argued my case about both ... he said no I said goodbye...
got 2nd opinion at Westmead BC clinic they agree with my reasoning ... 1 surgery over and done with... No reconstruction wanted here.
I was a 20EE never regretted my decision now over 6 yrs later
Afraser
Member
7 years ago
I had my mastectomy six years ago ( nothing prior - hoping nothing after too!). No reconstruction - never fancied it, didn't feel I wanted it (68 at time of surgery too - not over giving someone else a thrill, but definitely over breast feeding!). I haven't changed my mind, and I haven't decided to have a second mastectomy. I have discussed it with my oncologist (the second mastectomy that is - my surgeon will happily do a reconstruction any time I want, but hasn't taken the lack of interest personally).
Oncologist knows of nothing that would suggest a second mastectomy as a useful procedure. I have no (known) tricky gene, and no family history of cancer (breast or otherwise). I am more likely to get a new cancer somewhere else in my body. After 6 years my chances of a recurrence are shrinking (but not gone). I developed a persistent and very large seroma (not a given for a mastectomy of course but my body went into a bt of overdrive and, more important, may do it again for a second mastectomy). So I finally got my prosthesis almost a year after surgery. Took about a week of adjustment ( nothing painful just a slight ache) as of course I had been walking lopsided for 12 months ( large boobs). Beyond that, I have experienced no difficulty.
I am on my 2nd prosthesis (last about 2/3 years or so), it's silicone and while some women find them hot, I don't (I live in Melbourne). I had it fitted at home -the weight is right - 12 months with a soft pad can drive you slightly mad as it rises every time you bend and is to be avoided! I don't swim much but do, and just slip it in my swimsuit- worth getting a special swim prosthesis if you swim a lot. I wear the same sort of clothes I wore before - was never one for plunging necklines. My surgeon left me a tiny cleavage!
Do I worry about the other breast? Occasionally, pre scan anxiety although that got MUCH better after five years. I don't regret leaving my other breast there. I am fine with the way I look, don't strip off everything in public much but have done so ( Icelandic hot tub!) and guess what? No-one batted an eyelid.
I thought at first I would never get the hang of "just slipping" the prosthesis into the right place in my bra - it landed on the floor, looked like a Monty Python skit! But of course you do, quite fast. I occasionally worry I will head out without it one morning, as it's now not a conscious action but I haven't so far. I had to finally have surgery on the old site to fix the seroma (BIG infection) and that feels like enough surgery for me. Good luck whatever you do.
kmakm
Member
7 years ago
Drill down a bit on how and why your friends' disagreeing with your decision has caused you to waver. You trust their opinion because they know you well? Is it the uniformity of their view causing a kind of peer pressure?

I spent months talking about my decision with my friends, my family, my doctors. I also did a lot discussion with myself while walking. My mother, who had BC at my age and a single mastectomy, was for the decision to go the double. She's loathed the scanxiety, and of course my sister died from BC so we were past any caution on that front. My friends understood less, but were a mixed bag. One very good friend disagreed and it was in listing the reasons why to her in a WhatsApp message that actually clarified the decision for me.

I had an immediate reconstruction, and a subsequent positive test to a genetic mutation which has retrospectively strengthened my decision. I will always miss my boobs, but reducing my odds of a recurrence from high to very low is an enormous weight off my mind. I have no regrets. Sadness but no regrets. K xox