"Its up to you!!! "

Scorpio101
Scorpio101 Member Posts: 36 ✭
edited January 2019 in General discussion
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 

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Comments

  • kmakm
    kmakm Member Posts: 7,974 ✭
    edited January 2019
    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?
  • brightspace
    brightspace Member Posts: 458 ✭
    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
  • Glemmis
    Glemmis Member Posts: 343 ✭
    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.  
  • Scorpio101
    Scorpio101 Member Posts: 36 ✭
    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
  • Patti J
    Patti J Member, Dragonfly Posts: 589
    @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.
  • Sister
    Sister Member Posts: 4,961 ✭
    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.
  • kmakm
    kmakm Member Posts: 7,974 ✭
    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
  • Afraser
    Afraser Member Posts: 4,450 ✭
    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.
  • Scorpio101
    Scorpio101 Member Posts: 36 ✭
    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
  • PV123
    PV123 Member Posts: 202 ✭
    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.

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