Forum Discussion

Scorpio101's avatar
7 years ago

"Its up to you!!! "

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 

  • I don't know if it's any help @Scorpio101.  When I had my surgery, my surgeon didn't want to talk about it.  After active treatment, he was more open about a discussion.  He said that the here was no obvious physical reason to remove the other one but if my anxiety became too much, that was reason enough.  I have not had recon and am still undecided about it as I really can't face the thought of more surgery at the moment.  If I do decide to do it, it will be a tummy flap so I will only get one shot at having the same thing for both sides.  So, while it's not giving you a clear answer, maybe it might help you to decide why you might be thinking one way or the other.
  • @Scorpio101. I am not allowed to have mammograms. Several years ago, while having a mammogram on my breast, which has an implant, and has not had breast cancer, a mammographer burst my implant. I didn't notice at the time because she caused a slow leak. You could feel it through my skin. So, I  just have ultrasounds now. Although, I haven't  had a breast ultrasound for a while. CT scans are routine for me now.
  • 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
  • Hi @Scorpio101, I was diagnosed in 2016 at 56. Had left mastectomy, chemo, radiotherapy. I wanted the other breast removed at the time but my surgeon said it wasn’t necessary. I hate being lopsided, would rather have none but am now having surgery next month. Having right breast removed & double reconstruction using belly fat. Both oncologists are against it saying my risk is low & tried to discourage me. I have cycles of pain in that breast & am constantly being checked so at least I won’t have that worry anymore & as I am having surgery anyway I don’t want to regret the decision later.  I have spoken to a lot of women who have had it done with no regrets.  
  • Hi @Scorpio101  the decision does not have to be immediate
    I know of a 45 year old who had recon after 10 years. The types of recon can be simple such as silicon implant or more invasive  to body muscle transfer.
    For me the less the  surgery the better so I haveopted to be mono..for 8 years.. l had thought about recon gave myself a year to seehow i was travelling was a single 55 year old
    Now maybe i feel ..probably should have double mastectomy..but i took surgeons advice.
     I wear gel sports insert for swimming and in winter ....and have a bead filled insert for very hot days.But humidity option is to go bra less. 
    All thebest 
    Bright in hope
  • 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.
  • Ah Scorpio101! It's such a pickle eh...

    To clarify, you are considering going flat? No recon? And therefore minimising the possibility of further surgery?