double or single mastectomy - saline implant or tummy..

[carriemumsnet]

Hi all
Apologies - long post...
Is anyone out there able to share what it's like having a single or double mastectomy with reconstruction either with tummy fat/ muscle or saline implant?
My dsis has to decide by Tuesday what surgery to have.
The short version of a v long story is:
Primary breast cancer found in mammogram in Nov, confirmed grade 2 in Dec and she started on Tamoxifen because ER and PR positive and HER 2 negative.
Lumpectomy Jan 6th and just expecting radiotherapy.
Two weeks post op we were told cancer was grade 3 and she would probably need Chemo.
Onca type testing came back 18 so no chemo and back to radiotherapy.
New mammogram then found new area of concern so biopsy and diagnosis of DCIS - pre cancer - in same breast she had had surgery.
So she definitely needs a single mastectomy. First surgeon seemed to suggest double with saline implant would make her feel safer and would make it easier to get cosmetic symmetry and recover. So we thought that was what we should do.
Saw different surgeon yesterday who said chances of getting cancer in other breast were small (though it was possible) and she could have a single mastectomy using tummy fat/ muscle...which would match the remaining breast.
We are now totally confused.
My sis is a single mum of 6 year old twins - so recovery time is important but most important is obviously staying around to be there for them. Our mum died of this bastard disease aged 50 within 20 months of diagnosis. She just had single mastectomy - no other treatment. Our maternal grandma also died of it but sister is negative for BRACA gene.
We would love to speak to anyone who has had mastectomy with reconstruction - any pros and cons for the way you did it, anything that could help her decide! Anyone had a double mastectomy with saline?
Any advice very welcome. Thanks and apologies for long post.
x

[TweenageAngst]

Have sent you a PM

[carriemumsnet]

Thanks for pm - have passed on to my sis.

bumping thread shamelessly...

[Jenda]

Sorry about your sister, bloody awful. I don't have personal experience but my friend has just had a double mastectomy after having been diagnosed for the third time. She said she wishes she had done it years ago because it might ( but we don't know) have ruled out further illness or decreased the chances. She doesn't have the BRCA gene either.

She was going to have a reconstruction with muscle from her back but there wasn't w good enough bloody supply so they gave her implants. She's a bit unsure about them at the moment. I know one lady who had a reconstruction using tummy muscle and she was really happy. The only thing she did say was that if she watched a scary film or something, her breasts contracted along with her muscles!!

Sorry it's not really advice, but if she has any questions I can ask my friend who's going through it now. Lots of love

[carriemumsnet]

Thanks Jenda - that's really useful. The nurse and original surgeon were v much pushing implants. The next surgeon (who was a woman) made it v clear they weren't going to be that natural looking and put us off a bit and then threw in the idea of having a single rather than double. Did your friend get cancer in both breasts - sorry to ask such personal questions! I really hope your friend gets happier with her new breasts - any advice she has would be most welcome and I wish her a speedy and full recovery
Thanks again for getting back.

[carriemumsnet]

bump

[TheAussieProject]

I wouldn't take chances however small they are. Why risk to have to go through this all over again in 5, 10, 20 years. Especially with your family history (sorry about your mum and grandma ). Cancer is as your say a true bastard and a merciless approach is far better than a prudent and conservative one.

A very good friend of mine had breast cancer 8 years ago. Single mastectomy, chemo and radio and then 2.5 years ago she had to do it again for the other breast. Sadly she has now secondary lung cancer and the odds are not good. She is a single mum of a 12y girl and is terrified of what is going to happen to her DD.

I wouldn't care about how natural or fake my breast look. My mother was diagnosed with breast cancer stage2 3 years ago, I have all the checks possible every year (mammography, tomography and ultra-sound). If I were ever to have it, even a stage 1, my boobs go. Both. I don't care.

You can help and organise help for you sister's recovery. And fake breasts look amazing and your sister can name each after her DC, because she will have those for them.

[babyboomersrock]

Have sent you a PM

[TheAussieProject]

Carrie, maybe you should try to post on the Tamoxigang thread if you haven't already www.mumsnet.com/Talk/general_health/2590723-All-the-fives-Tamoxigang-cancer-support-thread-55 many lovely MNetters have been through mastectomy and may share their experience with you.

[Ledkr]

I had a lumpectomy for a gd3 tumour 22 years ago at 27, radio and chemo. Two years later I had a double mastectomy after a diagnosus of brca. I had two saline implants and gelt the pitot skin and my nipples although the previously www.tewkesburydancefestival.co.ukaffected Breast ended up looking a bit different I'm happy with the results and have had no problems.
I had my ovaries removed two years ago due to the risk of cancer.
I'm happy to chat to your sister if she likes.
I live a full life. I have five kids, three I already had when dx and two ive had since.
I wear what I like and don't feel held back whatsoever.

[Ledkr]

Recovery was ok. No worse than a section and I had 3 under 6 and a Dh who had to work.
It hurts a bit but psi killers are good these days

[TheAussieProject]

Has your sister been tested also for the PALB2 gene mutation? It is the third gene in order after BRCA 1 and BRCA 2 with a 35% chance.

[Ledkr]

I've never heard of that one.
Might be of interest to my DIL abd Her famiky, 3x sisters with Breast cancer and now the 19 yr old DS with testicular

[carriemumsnet]

Thanks so much for the responses. I will definitely get on the Tamixigang thread. So sorry to hear about your friend Aussie - I think she has decided a double is the way to go - now just need to decide on implants or tummy fat. I've never heard of PALB2 either - will do some research for her and for me.
Thanks to all for responding, I really appreciate it.

[Marshy]

Hi there Carrie
I had a mastectomy with implant recon in 2013 after diagnosis of high grade dcis.
I was due to have an uplift of the remaining breast almost a year later to get some symmetry but preop mammo showed dcis in that breast too - nothing 12 months earlier - so I had a second mx and implant recon. No other treatment needed.

I went for implants as it was the most straightforward op with less scarring and quicker recovery time than the other options. I recovered physically very quickly although the emotional strain of going through diagnosis twice did floor me for a while. I had lots of support on the tamoxigang thread.

I love my new breasts though I do miss my nipples more for the sensation than the appearance. They don't look like the originals which were nothing like as perky as the new ones. They are quite firm to the touch and can feel cool if the ambient temperature is cold. They look great in clothes and I think they look pretty good naked too although I haven't gone for nipple recon or tattoos as yet.

Most importantly, I'm still here and healthy.

Hope it goes OK for your sister

[wineoclockthanks]

HI Carrie

Another member of the tamoxigang thread here. I had a double mastectomy in MAy 2014. I only had cancer in my right boob but made the decision to have both removed a) because I wanted to ensure it never returned and b) I had large boobs and thought I would be very lobsided

I can't help re reconstruction as I decided not to reconstruct.

Best wishes to your sister, please feel free to PM me if I can be of any help.

[TheAussieProject]

will do some research for her and for me.

I was trying to find a way to suggest you went to see an oncologist yourself with such a strong family history.

Cancer is not only a bastard but an unknown and mystery one. A GP cannot, unless he has a specific interest, be informed by all the changes, discoveries and research. He will refer for the classic preventive exams but might not know about the PALB2 for example, a fairly recent discovery.

You can read here and then expand your research www.nejm.org/doi/full/10.1056/NEJMoa1400382#t=articleTop click expand article an extract

By 70 years of age, breast-cancer risk ranged from 33% (95% CI, 25 to 44) for a female carrier with no affected relatives to 58% (95% CI, 50 to 66) for a female carrier with two first-degree relatives who had breast cancer diagnosed by 50 years of age.

or a simplified version www.breastcancer.org/risk/factors/genetics .

I did my annual checks two months ago in Sydney, and the Ultra-sound radiographer went all the way up to my collarbone. As I was commenting I never go that far when doing my auto-check, she said I should, because because breast tissue is not limited to the "boobs'. First time I ever heard of that one.

I have an hereditary genetic condition with makes me more prone to breast cancer. But I can't just "wait and see" between one yearly check up and the other, so I try to keep updated with the research. Most medical articles (from Nature to the New England Medical Journal) are on subscription but I can access them from the NSW State Library computers so maybe you could do that as well from one of the big libraries or University library or if you know someone who is an academic, use their ID.

And I find the MOOCS to be eye-opening . There are two right now one from Yale www.coursera.org/learn/breast-cancer-causes-prevention/ and one from the John Hopkins www.coursera.org/learn/cancer/. For the free enrolment just click "Audit the course". Not only will you have the most updated and unbiased information given to you in the form of a lesson, but also access to the written syllabus.

Of course all these theories start spinning especially when they contradict each other such as the glucose one, but you can still get the big lines and maybe make some small changes to your lifestyle that don't do any harm such as favour antiangiogenesis food or fast for a couple of days every month.

I have been completely off topic from your first question, single or double, sorry.

[roselover]

Hello - I am Carrie's sister (how lucky am I to have her - you will never know) - I am the breast cancer sufferer but it seems like the whole family is with me on this - I am so grateful to everyone who has taken the time to give their views, opinions and knowledge. Its funny running this by friends - some people are really keen that I keep sensation in at least one nipple!!!!!.....which has really surprised me ....having lived with this nightmare since December....the total and utter dread of it all - seriously, loosing my nipples is such a little part of this. I am so grateful for your in put - truly. I just wish I knew what on earth had caused it - did I miss out on five years of sleep raising my sickly twins? Did I skip too many meals and eat too much toast....did I avoid the gym - is this why I am ill?????- Oh well onwards and upwards from here hey? Thanks all

[TheAussieProject]

Hi Roselover, it is nothing you have done.

Every single person on this planet has cancer cells in them. Most of the time, they stay tiny, less than half a millimetre and are kept at bay by our normal cell which attack them and they will never cause any harm. Then in some persons, cancer cells manage to grow and spread. We don't know why or what causes the trigger. We sometimes know how to stop them or shrink them, but one thing is sure, it is nothing you have done. Some will smoke two packets of cigarettes and the only green they have is the heineken beer and be fine all their life, others are vegan and will have cancer. Babies are born with cancer.

Science and research have identified triggers such as pesticides, processed meat, ... so in higher risk persons we should try to avoid all these.

Every person has his/her personal attitude. My sisters are more a wait and see, me I prefer to read, not only because it is fascinating but also because I feel in control.
I don't spend my days focusing on that, I have placed search alerts and from time to time I receive something in my mailbox and from there I follow up what interests me.

It also help with my condition. My body produces benign tumours but some could turn cancerous, so the more I know about cell growth (good and bad cells), the best I am and will look as these can be quite disfiguring if they become very large. So far so good, no spreading.

I have lived in different countries and approach and attitude differs widely. In Spain, where we were before moving to Australia, it is all about prevention, so you see an oncologist even if you don't have cancer. It was during one of those visit that the oncologist told me we all have cancer in us. In Australia, it is more a we will see once you have it. So I had to pay privately for the preventive diagnosis exams.

But even if it is nothing you have done, there are things you can do to decrease the probabilities genetic gave you.

The first and the most important is deciding for a single or double mastectomy. With your family history, I wouldn't really hesitate. Even without the gene mutation. The PALB2 was discovered less than 2 years ago. Words hasn't come very far yet. A GP Has to care for thousands of illnesses and can't possibly remember or even read every single medical article published.

Second, educate yourself, with internet you have no limitation. Of course, stick to good sources (universities, medical journals and science publications) and not a blog or pseudo health guru or whoever tells you to stop the treatment . I hate it when doctors say stay away from the internet, I would love to tell them they should spend more time on it. You can't do much about the why; shit happens is actually a good explanation, but you can try to do something about it.

Third, my experience and what I do, is mine alone. I am sharing it with you but I am not saying you should do it. Do (or don't do) whatever makes you feel confident and good. Id reading about it would make you freak out, don't.

Did they talk to you about IORT? Intraoperative Radiation therapy? Basically during the surgery while your breast is open and exposed you receive a massive dose of radiation straight in the cancer bed. As effective as 25 to 30 classic radiation sessions with a lot less side effects especially on the skin.
I am about to board the plane from Noumea to Sydney so can't really search for the medical articles, here is a quick link www.cancercenter.com/breast-cancer/iort/ and you can look for more detailed ones. It is not for every type of breast cancer but maybe it is worth mentioning it to the surgeon on Tuesday when you tell him about your decision.

Fingers and toe crossed for you and as we say in France, lots of merde.