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SoldierCrab
Member Posts: 3,445 ✭
Hi everyone Twiggyjumps is new and had put this where we dont necessarily see it. So here it is for people to respond to her...
Twiggyjumps
Twiggyjumps
Well I've just joined the bcna network, just got diagnosed this week triple positive Her2, ErPr in right breast grade 3. Thinking of having a double nipple sparing mastectomy and reco all at once. 4 choices, do nothing, have lumpectomy with reco, mastectomy with reco or double mastectomy with reco. I'll be 50 in July! Getting gen tested next week as in family but feel I need to get rid of all the breast tissue in both asap! Doc said I may not need radiation therapy but definitely chemo. Husband really worried said I should do things gradually and see how it goes but I'm not convinced. I see plastic surgeon next week. In shock right now. Anne x
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Hi @Twiggyjumps ,
Welcome to the network. I know this may sound hard as you are still in shock and if you were anything like me at diagnosis, I was just cut it out now!! However you do have a bit of time to make a decision so take a breath if you can. If you are having genetic testing and the results are not going to take too long then why not wait and then you can be guided by those results. Either that or if the results may be a while and you are desperate for surgery then have the lumpectomy and then you have time on your side while you decide about mastectomy and or reconstruction. I can imagine your head is spinning. The last thing you want to be doing is rushing into a double mastectomy and maybe regretting it later. I have had a bilateral but it was only after a lot of weighing up pros and cons. Speak to your surgeon and ask if having a mastectomy will negate having radiation? it sometimes (not always) does. Also having radiation can limit some (not all) of your reconstruction choices. Some ladies choose mastectomy instead of radiation. These are all things to discuss with your Dr. If you are sure about reconstruction or even if you just want to do a bit of research feel free to join our private choosing breast reconstruction group. We have quite a collection of photos and resource posts to have a look at.
Sending you a big hug.
Paula xxxx1 -
Thank you Paula. Very daunting and lot to take in.0
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Our first responses can be the truest ones. So many women feel the way you do for good reason.
It can be a bit tricky, depending on where you live, to get a double mastectomy organised. More a regional than metro thing, but I got some good advice about this years ago. Get your GP to sort out some visits with a counselor and talk to them about what you want to do. That way, if there is any mucking around, a phone call with your permission can demonstrate that you have thought it through and are making informed decisions. It should not come to that but an independent ear isn't a bad thing anyway. Seems like you have already been doing your homework. Good luck.0 -
Hi @Twiggyjumps and welcome to the forum. I had a single skin and nipple sparing mastectomy with immediate reconstruction using silicon implant last June so am now approx nine months post surgery. Was offered lumpectomy but was also told the amount of tissue that had to be taken would result in a very deformed breast even under clothing, there was also the possibility of a satellite cancer in the breast as well so for me it was a no brainer. Every one is different and chooses for very personal reasons. Gathering info to assist your choice is so beneficial and can help cement your decision. If I can be of any assistance in answering any questions you may have I'm more than happy to assist. Xx Cath1
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Thanks. I really appreciate your feedback. The more I read through the forum the more I gather, not all of course, but a lot of ladies returning for more surgery later and having more chemo
In my case I'm treating the mastectomies as a small problem to avoid as much as possible later as I worry more about the cancer spreading to my other breast and other places. I'm trying to concentrate on the long term. Plastic sounds way more fantastic! But see there could be some issues there also. Nothing is ever perfect. I live on a small Farmlet on the Mornington Peninsula but very close to treatments. I'm feeling frightening right now. Not only from the surgery but from the scary chemo process. Can my little dog sit next to my bed in hospital? Lol she relaxes me.
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Twiggyjumps ... Your Dog yes ... hell my dog (little bichon) slept when I slept and if I was ghastly etc she would trail behind me 3 paces behind.... Prior to my treatment she was my daughters baby... slept in my daughters room etc etc.
But when I got home from surgery she never left my side.... now 4 years later my daughter has to close her door if she wants Lucy to stay in her room.
We lived in a big farm house with double brick while I was sick
my bedroom was at one end.... living the other I had no voice on chemo, she would run and get the kids to come and help me. She got them when I collapsed in shower the first time.... Chair in shower after that. Dogs/cats are very good at helping us to relax.
we all cope differently with our chemo drugs.... I was a mess I had allergic reactions after allergic reactions but I do that with regular drugs also....
I want to give you hope 4.5years later I am NED (no evidence of Disease) getting on with life. For me I chose no recon as I have allergies to most things in life. I dont miss the 8kg they took away on 25/10/12. in fact now my back and neck problems are gone that I had prior to surgery.
Try to speak with a Breast Care Nurse she will break it down for you and also can refer you to a Social worker/ or Psychologist to be able to discuss with no holds barred the choices you are facing...
Hugs and energy for today
Alice xoxo
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My first reaction was get them both off and good riddance with no reconstruction but my doctor said, for me, there was really no need to take the perfectly healthy one. He was also reluctant to do a single mastectomy preferring instead to do a lumpectomy but my gut told me to stick with a mastectomy. As it turned out I was right, the other side of the breast had already started to get some abnormal cells started. Do whatever your gut tells you.2
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Hi @Twiggyjumps, sorry you find yourself on this forum but welcome. These early days can be overwhelming! You are still reeling from diagnosis and have information overload and some pretty big decisions to make. As the other ladies have said, just go with your gut feeling. We have all been where you are but have made individual decisions that are right for us.
I had a left nipple sparing mastectomy with immediate silicone implant on 1/8/16. (Stage 1, grade 1, Er/Pr +) I had a wonderful surgeon who took the time to explain my options. I'm not big breasted so a lumpectomy wouldn't have been good cosmetically but more importantly I was worried about getting clear margins. My GP sent me for an MRI before I saw the surgeon to get a clearer image of the cancer but also to make sure the other breast didn't have and cancer or unstable tissue. Thank goodness the right side was fine.
I asked about removing both breasts but my surgeon said I had the same chance as the next woman of getting cancer on the right side. Now I am taking Arimidex (a hormone blocker) my percentage has reduced even more.
Wishibg you all the best with your decision, there is a lot of strength and support here for you.
Jane xx1 -
Welcome Twiggyjumps, I wanted a mastectomy but surgeon said it wasn't necessary so had lumpectomy. Pathology came back worse than expected so had mastectomy with lymph node removal last August. I wouldn't have been happy anyway as my breast was about half the size of the other one after lumpectomy. I am having the other breast removed & reconstruction of both later this year. Have just finished chemo & soon to start radiotherapy. My surgeon said removing the other breast doesn't improve survival rates but my tumour wasn't picked up on mammogram as it was hiding behind dense breast tissue & I don't want that to happen again on other side. It is a hard decision, good luck!1
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Hi Twiggyjumps and all, this is interesting to me as I had a lumpectomy + axillary dissection + reconstruction (no implant) 10 days ago but was told this morning that they found Ductal In Situ Carcinoma with 2 Foci during the surgery in addition to the Invasive Carcinoma they were removing, now they recommend a mastectomy. I am in shock as the surgery went really well and I was so pleased with the look of my breast and getting my head around losing it is tough.
I am am picking up from responses here that potentially they could still conserve my nipple and reconstruct the breast?
The axillary dissection found zero lymph nodes involved so I naively hope/want to believe this means it's not spread yet...although I am have a CT guided biopsy to check out a mystery lesion on my spine.
Sorry if it is inappropriate to jump into this thread, I am new here
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@Jailbirdstreet
these is a group for reconstruction they have lots of information in this group ..http://onlinenetwork.bcna.org.au/group/1-choosing-breast-reconstruction
you will need to ask to join the group another good link is reclaim your curves. http://www.reclaimyourcurves.org.au
Not inappropriate to jump in at all...
we are supportive and will always help you find the information you are needing ....
Alice
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It's disturbing to see so many comments on this thread that start out with a surgeon advising against an 'unnecessary' mastectomy and end up with emergency everythings and complete disbelief and shock. I don't understand how we keep getting told everything will be fine when it is patently beyond anyone's skills to make such statements. No wonder making these decisions can send us mental.2
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Hi @Jailbirdstreet, Everyone's bodies and diagnosis are different but the nipple sparing mastectomy worked out beautifully for me. I dont think the procedure has been around for that long and I'm not sure if having this type of mastectomy is dependent on any other factors such as breast size etc. My incision is under the breast so pretty much invisible. Perfect size match to my healthy breast. I'm only small so both are equally perky but I'm sure that will change in time! My reconstructed breast and nipple are numb with just a couple of small areas with sensation. My nipple still responds to pressure but I've been told that is just a result of the pec muscle under it. It's been 7 months now and it is softening nicely and most of the stitches I could feel beneath the skin are gone.
Have a chat to your surgeon to see whether this is an option, we are fortunate to have all the choices we do. Wishing all of you needing to make similar decisions all the best. Jane xx1 -
I totally agree that making these decisions can send us mental. I had mental break downs many times for the last few weeks when I was facing choices of radiotherapy, unilateral or bilateral mastectomy based on my post lumpectomy pathology results. I was told to follow my gut feelings by the breast nurse. I was so upset and wondering what and where my gut feeling was while riding on this emotional roller coaster.
I just had a genetic consultation and bloods taken today. It takes 6 weeks to get the results back. I was so grateful that I was seen by a breast surgeon as part of the genetic counselling. I walked out of the door with a clear plan.
Anne, I totally understand how you are feeling now. It's the most uneasy decisions to make. I was diagnosed with invasive lobular cancer just before last Christmas and had lumpectomy. I was 40 years old. I had the feeling of get rid of everything as quickly as possible after given choices of radiotherapy or mastectomy. As time passed, I actually has changed my mind with all the information I gathered. I don't know if it's the right decision, but I am happy with the decision I made at this point of time. Wishing the very best with your decisions!
Lots of love and hugs for you!1 -
Thanks so much for your responses, what an amazing community of support x1
