Forum Discussion

bronni's avatar
bronni
Member
8 years ago

Decisions, Decisions, Decisions

Well, I've been reading posts for quite a few weeks now, keep thinking I should post but don't quite make it. Initial diagnosis post breast screen mammogram, call back & biopsy late May, Grade 1 invasive ductal carcinoma. Appointment with breast surgeon June 1st, she's been great, pictures, colour coding etc, she answers questions, gives explanations. Lumpectomy June 8th, recover really well, back at work after 10 days.
Grade 1, oestrogen & progesterone receptor positive, HER- 2 negative.  13 lymph nodes removed, 1 positive. Clear margins around tumour except one side where DCIS & only 1/2mm clear margin there so back for wider excision. Appointments booked with medical oncologist and radiation oncologist. Surgeon unwell so second surgery delayed. Medical Oncologist recommendation radiation then hormone treatment, Zolodex & exemestane or Tamoxifen (I'm pre-menopausal, 46); don't need to decide until after radiation. Radiation oncologist says basically same thing, get wider excision done, come back 3 weeks post surgery for planning appointment. Happy with all that, 2 radiation oncologists, medical oncologist and breast surgeon all on same page.
Wider excision done June 29th, recover even quicker. Got results July 6th. More DCIS found with 2mm invasive ductal carcinoma within, still grade 1. Again right up to margin. Don't need to think about it, I want it all off, so I say ok then, mastectomy. So, no radiation.
Then I come to the Decisions, Decisions, Decisions ....
Tumour not near nipple, can have skin & nipple sparing mastectomy & immediate reconstruction, plastic surgeon will work with breast surgeon. But then surgeon suggests I consider double mastectomy given annual incremental increase in risk of developing cancer in other breast. BAM!! really didn't see that one coming, which is silly really, it makes sense.
So my immediate options are: 1) L mastectomy, 2) L mastectomy & reconstruction, 3) double mastectomy, 4) double mastectomy and reconstruction. If I have immediate reconstruction I get to potentially keep my nipple/s, that's appealing. But it will be with implant & I need to find out more about implant vs autologous. Next appointment with surgeon is August 10th. Between now & then I am researching (talking to breast care nurse, plastic surgeon, internet, people who've had similar surgery). I'm probably leaning towards immediate reconstruction the thing that I really don't know is L mastectomy only or double.
The additional complicating factor is that my husband is Bosnian and we are partway through the visa process so he's in Bosnia & I'm here, and that really sucks. I hated being apart before but now I really really hate it, particularly since Thursday. It's really hard for him too because he has to rely on what I tell him. I have great family & friends and they are really supportive but it's not the same. The plan was for me to be there for Christmas and time wise hopefully that will still be doable. 
Anyway that is where I am at currently. I really appreciate reading all the posts, it has been really helpful for me. 
Would really appreciate some feedback about immediate reconstruction as well as decision to have double mastectomy. 
                              

10 Replies

  • mum2jj's avatar
    mum2jj
    Member
    8 years ago
    Hi @bronni I am glad you have joined choosing breast reconstruction, if not for anything else but to check out the photo stories.  Just be aware it can be a bit confronting to look at to begin with. The stories attached to the pics my help with your decisions. I had a bilateral recon.  I had two diagnosis of same breast but both were very soon after clear mammograms and the second was at the end of all my treatment!! My breasts were very dense and didn't image well.  That was really what helped me decide to remove my healthy breast.  It really is such a personal decision.  I think if I hadn't had the recurrence so soon after my lumpectomy/chemo and rads that I wouldn't even have had a single mastectomy. However it wasn't an option when I had the recurrence.  I initially only had the single mastectomy as there was a sense of urgency to get me back in the chemo chair (yeah) NOT.  My surgeon told me if I still wanted the other breast off then we could do it at the time of recon and so that's what I did. 
    I wish you all the best and send you a big cyber hug.

    Paula xxx
  • melclarity's avatar
    melclarity
    Member
    8 years ago
    @bronni I can understand how incredibly hard it must be with your husband not there. Decisions are tough absolutely and there's no right or wrong only what you feel to be right for you. I had a recurrence in 2015 after 4yrs in which I had a lumpectomy, radiation and 4yrs on tamoxifen. I had another major lumpectomy and am an E cup so had plenty, then chemo, I finished in December 2015. My surgeon and oncologist recommended a Mastectomy only because I had a recurrence. I did Genetic Testing which came back negative, the Genetic Counselors said that the % was only slight as the right breast is separate. Their recommendation was only for a single left breast Mastectomy, which I did in february with immediate Diep flap reconstruction like @nikkid , I wasnt able to have an implant due to previous radiation treatment, I also didnt want to go that path, so I was happy with the Diep just feels like me still, its just my tummy fat LOL.To me there was no point in a double, I lost my nipple but my revision surgery is in a week where I get a new one LOL. I havent missed it at all strangely and I had a massively hard time with the pending Mastectomy thats why it took a year to do after treatment. So the reconstruction helped, if I hadnt of done it that way, I wouldnt have been able to do the mastectomy I don't think. Just me. My diagnosis was IDC 2.5cm tumor, Stage 2 Grade 3, no node involvement. All the best with your decision. Hugs Melinda xo
  • Zoffiel's avatar
    Zoffiel
    Member
    8 years ago
    Hi Bronwyn. When I had to make those decisions recovery time was a big issue for me. My initial cancer was ten years ago ( I've since had a recurrence) I had invasive lobular in one boob and  'cysts' in the other so a double was a no brainer for me but at that time finding a surgeon who would perform a double mastectomy was a struggle.The first three I interviewed wanted to do one at a time which would  I have dragged the whole process out for far too long. I ended up having immediate implant reconstruction with skin and nipple saving. 

    Keeping the nipples, though at the time I wanted to do it, was a mistake. I was a DD cup and have gone down to a B. There is too much skin and the promised 'dressmaking' never eventuated as we got too caught up with trying to manage the implants which didn't behave well. My nipples have now slid down m chest, though one is much higher than the other, and it looks dreadful. If I had the energy I'd line up for another round of surgery, get the nipples removed and have the excess skin sorted out. I just don't care enough any more.

    One of the things that doesn't get properly considered, in my opinion, is the way each individual scars. I'm covered in thick ropey keloid scars (had an interesting life) so I don't know why everyone was so surprised when I had scarring, cording and encapsulation issues. I can only imagine what would have happened if I had gone for tissue reconstruction. It sounds like your surgeon is a sensible person, keep asking questions.
  • socoda's avatar
    socoda
    Member
    8 years ago
    Hi @bronni, thx @primek. Like Jane @Hopes_and_dreams I too had a single skin and nipple sparing mastectomy with immediate recon using implant. I was stage 2, grade 1, EO+, PR +, Her2-, 2.7cm tumour. I was a C cup but my surgeon says she measured me incorrectly and I went up to a D cup. Mine was an easy decision as I had been told that due to the amount of tissue I was going to lose I would be better having a mastectomy, and then I found out I also had a satellite (which turned out to be benign) but that was the clincher. I was in hospital 6 days, 3 of them on strong painkillers, the other three on panadol only. I trotted around the hospital every day with trips to the cafeteria for cappuccino's and catch ups with friends and family. Very sociable time really. Left hospital with 2 drains -  and they weren't a drama. Altogether I was off work 8 weeks (I couldn't go back until the second drain was gone). Like Jane I have very little feeling in my breast (more to the sides of it, none in the nipple although it still responds to pressure and cold). I'm having a reduction (length) and lift to the other breast and some fat grafting to plump up and even out my perky foob, sometime in the next 11 months. (Main surgery was last June). Am very happy with my choice and how it has turned out. My surgeon is an oncoplastic so had no need to see anyone other than her - bargain. Didn't have a need for right mastectomy and if anything happens to that one will deal with it when the time comes. Due to grade 1, no nodes positive and choice of mastectomy I got away without chemo or radiotherapy and was premenopausal so am on Tamoxifen. All good. Powering along and very happy. If you have any questions you think I can help with, don't hesitate to ask. Knowledge is your power when you're on the rollercoaster!! Big hug and best wishes in your decision making. Xx Cath
  • bronni's avatar
    bronni
    Member
    8 years ago
    Hi All,
    Thank you so much for your encouragement,  I have found the online network a great source of information & encouragement. I have joined the Choosing Breast Construction group, just not posted yet. That will be tonight I think. Bronwyn
  • primek's avatar
    primek
    Member
    8 years ago
    Welcome @bronni I had a bilateral skin sparing mastectomy with immediate delayed reconstruction. What that means is initially a tissue expander put in then swapped over to a silicone impant. Mine was near nipple so didn't save either. They used a breast reduction cut on me as I was an E cup and now reduced to a D. I chose this surgery due to family history, dense breast tissue hiding the breast lump from manmogram and couldn't see how chopping up the other breast to try to match my new one (very heavy low sitting boobs) was a better option than both off. My surgeon suggested it actually. My breast surgeon did the whole procedure.

    Pictures are available in our breast  reconstruction group which you can request to join. Link below. 

    http://onlinenetwork.bcna.org.au/group/1-choosing-breast-reconstruction

    @socoda Once again your experience  of immediate reconstruction would be helpful I think. 

    A hard decision. My advise...go with your gut. Kath x
  • Hopes_and_Dream's avatar
    Hopes_and_Dream
    Member
    8 years ago
    Hi @bronni, sorry that you find yourself here, but welcome.  You are in good company and as you've already seen there is a huge amount if information and support.
    I was recalled from a routine mammogram one year ago today.  I had a deep core biopsy and was diagnosed with invasive ductal carcinoma on 20 July 16.
    I had a great surgeon who gave me various options but it can be overwhelming when faced with choices in something we know little about. My decision was reasonably easy. I'm small breasted so a lumpectomy wouldn't have been good cosmetically but more important, I was concerned about getting clear margins.  My cancer was 12mm.
    I chose a left nipple sparing mastectomy with an immediate silicone implant.  I had an MRI before seeing the surgeon on the recommendation of my GP.  This was to make sure there was only the one cancer and to check my right breast. 
    Because my right breast was healthy the surgeon said I had the same risk as the general population in getting cancer on that side.  This percentage lowered further as I'm now taking a hormone blocker.
    So my cancer ended up grade 1, stage 1, ER+ & PR+ 100%, HER2-.  3 lymph nodes removed, all clear.  Clear margins.  Arimidex for 5-10 years.
    I'm happy with my surgery decision and to have an immediate implant. My surgeon has done a great job in matching me up and the scar under my breast is barely visible.  Although it responds to pressure there is no sensation in my nipple and 90% of my breast is numb but I have become used to it.  Small price to pay!
    12 months on and the implant has softened nicely and looks and feels almost like the real thing :)
    You can also request to join the Choosing Breast Reconstruction group. There are photo stories of various types of reconstruction which may help you with your decision.
    It's tough that your husband is not able to be here with you, but you are definitely not alone. We have all been where you are and are here to help.  Wishing you all the best, Jane xx

  • Amazonia's avatar
    Amazonia
    Member
    8 years ago
    Hi Bronni,
    I was diagnosed July 2016 with carcinoma (L) breast with nipple involvement and chose (L) skin sparing mastectomy. Unable to save nipple but I wasn't comfortable taking the risk of lumpectomy and margins. I am big breasted DD to E and so had tissue expander. My PS favours not doing immediate implant above a B cup. I am planning on a C to D implant.
    At the time I asked about a double mastectomy. Just wanted to eliminate as much risk of recurrence as possible and I'm a matter of fact, black and white thinker.
    My surgeon preferred to wait on pathology, which I respected and so had just (L).
    Pathology turned out Her 2 positive and grade 3 aggressive but no node involvement so straight to the big guns of chemo for 6 months plus Herceptin.
    Once chemo had finished we met again and both agreed on the (R) mastectomy also which was done in April due to high risk pathology.
    I have both with tissue expanders now and due for implant changeover in Sept.
    I am very happy with the final decision for double mastectomy even with the delay and extra surgeries which I found not too stressful. 
    I just feel better insured and to be honest, I'm happy knowing that once final surgery is completed I will have a symmetrical pair.! although that is more likely with a Tram or Diep flap. I would have originally had the single mastectomy and a reduction and uplift of the remaining breast but since having the expanders, I know I prefer the lesser risk but also less differentiation in size, shape and tone..but that's just me..
    It takes real strength to go through any of this with the support of your loved ones with you and even more to do it on your own but it is doable and you will surprise yourself.
    It seems as though you are on a path of research and action.
    I wish you all the best and if there's anything you want to know, there's a ton of differing experiences on here.
    cheers,
    A.
  • nikkid's avatar
    nikkid
    Member
    8 years ago
    Hi @bronni, your diagnosis (low grade, early, DCIS and some invasive) sounds very similar to mine. Because of the multifocality of the DCIS, my breast surgeon recommended mastectomy. I didn't require radio or chemo. However, I was advised to lose the nipple. I did ask the surgeon whether or not I should have a mastectomy of the right breast but her response was negative and that I didn't need to. That was all a bout 16 months ago! I had the left vertical skin-sparing mastectomy, with insertion of a tissue expander and then in March this year had a DIEP reconstruction. Very happy with the result. Just need to get the nipple reconstructed in a couple of months and right breast reduced to match.

    I'm on Tamoxifen and that's it.

    Its been a roller coaster ride....so totally understand how you're currently feeling. Good luck making the decision that is right and best for you  :). Nikki
  • LMK74's avatar
    LMK74
    Member
    8 years ago
    @bronni, what a difficult decision. Just want to wish you the best whatever you decide. I'm having right mastectomy soon without reconstruction because of radiation after. Other ladies will be able to tell you of their experiences.
    All the best  xo