Hi, I am new here, so I hope I am not asking too much all at once.
I am nearly 57 years old and coming towards the end of chemotherapy after being diagnosed with Stage 1, Grade 3 Breast cancer last August. I had a lumpectomy, and will start 3 weeks of radiotherapy next month.
Because of our family history, my twin sister (no cancer) and I have been offered preventative surgery. She went to discuss this with them last week (they wouldn’t discuss my case) but came away feeling that our initial decision to have a bi-lateral mastectomy with reconstruction at the same time, was perhaps not as straight forward as we thought. We didn’t realise how long it would take from beginning to end (she was offered expanders as she is quite skinny). However she would have the support from her husband during her post op care.
I have read that expanders would not be an option for me as I will have had radiotherapy, but then neither would flaps using skin graft from my tummy as I had a hysterectomy 4 years ago. Question 1 - Does anyone know whether this is true? I haven’t much muscle anywhere else. I don’t get to see the consultant until end of February.
Therefore I am thinking perhaps I should just take my chance and worry about it should the cancer return (when maybe medicine and alternatives could be more advanced. Question 2 - Will the chemotherapy and radiotherapy keep it at bay for a few years or could the cancer come back at any time? Question 3 - If it did, would a mastectomy be the common form of treatment bearing in mind my previous and family history?
And finally Question 3 - Is there anyone who has had a double mastectomy and reconstruction at the same time (whether using expanders or flaps) who would be willing to share their experience with me as to their recovery and timescales?
I live on my own with my rottie, so will not have anyone to care for me post op so it is important I make the right decision. I have managed to continue working and leading a relatively normal active life during my chemotherapy.
Have you read the reconstruction booklet avaiable from BCC? There is a lot of info. Available and also several options for recons. I think generally we are not recommended to have recons with expanders or implants if we are having radiotherapy. This is due to the potential affects of radiotherapy on the area which can harden the breast and make implants shrink/rise. However, saying that, I do know of 2 ladies, 1 who had bilateral mx with expanders and the other with an implant who both went on to have radiotherapy with no problems. Has your breast surgeon talked through the options with you?
I had a mx. 5 weeks after chemo finished and then radiotherapy 5 weeks after that. My breast surgeon went through all the options with me and I chose to have a delayed recon using a tummy flap (DIEP). However, I have to wait until a year after radiotherapy ended until they will do this to allow my chest area to settle down.
There is so much to consider when deciding on the right reconstruction and it is very much a personal decision. I would give the BCC helpline a call, they are really helpful and try and research as much as you can before you discuss surgery options.
Sorry I can’t help with your questions. I’m sure someone else will be along soon with some more answers for you. I will also contact the lady I know who had a bilateral mx. And ask her to post here.
Good luck with your decision xxxx
Welcome to the Breast Cancer Care discussion forums, as you will see the users of this site have a wealth of knowledge and experience between them and will offer you some good, honest support.
To compliment this I have put for you below the links to BCC’s publication regarding breast reconstruction and to the area of this website where you can find a reconstruction animation.
I had a bilateral mastectomy in October with immediate reconstruction using expanders followed by radiotherapy and will have DIEP reconstruction later this year or next. I have a strong family history and am going with my sister to see a surgeon next week as she is contemplating preventative surgery at the age of 26.
I am very happy to answer any questions you have. I’m afraid I don’t know about the validity of a DIEP following a hysterectomy so hopefully someone else will be along to help you with that.
My recovery from my mastectomy and expander insertion was a few weeks - but I had had full axillary clearance at the same time and although I had my husband around there was nothing I couldn’t do for myself. I did supermarket shopping online etc and have a very bouncy puppy who I had to walk and entertain! DIEP will be a 3 month recovery op.
Would having expanders put in prior to radiotherapy be an option? And then have them replaced with implants once you have reached your desired size?
One of the disadvantages of implants is that it is very difficult to get them to mimic real breasts - but that is more of a problem for ladies having a single mastectomy as they wouldn’t match. However, I am very happy with my 2 perky boobs!!
Obviously none of us can answer questions on the likelihood of your cancer returning. Yours wasn’t very advanced if stage 1, so hopefully the chances are low BUT it can return at any time and if you do carry a faulty gene you could always develop a new primary. This was my main reason to go with the preventative surgery. It might be best to speak to a geneticist who will be able to explain your risks to you in full.
Let me know if you have any questions and I would be very happy to answer them if I can.
I had my last chemo yesterday. In 3-4 weeks time I start radiotherapy. However I discussed my options with both my Oncologist consultant and Surgeon and basically I have two options I have given some thought to.
I am unable to have an expander in the breast if I have already had radiotherapy. So it was suggested that I may wish not to proceed with the radiotherapy and then I could have a full mastectomy and expanders in both breasts. (the alternative using a flap in my treated breast seems to be a longer recovery and more drastic, and since I live on my own, the sooner I recover and manage the better).
Or do I take my chance and go ahead with the radiotherapy, and not bother with any surgery. If the cancer returns (family history in mind), then my reconstruction surgery options would be limited, and would probably necessitate two operations at different times, an expander for one breast and a flap for my current problematic one. By not having surgery I would be reliant on either the cancer not returning, or an advancement in cancer research which would make things easier.
At present I am very fit, and my main hobby is walking up in the fells. I also do mountain rescue which helps my fitness. An argument for having the surgery now, would be that they would be operating on healthy breasts and a fit person, recovery would be simpler and quicker than if I had to have a flap as aswell. But an argument for leaving it would be that I may never need surgery or be too old to worry about reconstruction.
If I have surgery now, then there is no doubt in my mind that I would want reconstruction.
I know this is a very personal issue and you don’t know me, but based on my post, would anybody out there be willing to offer their opinion as to which route to take. For peace of mind, I am already leaning towards a particular option.
Thank you.
Love
Teazle (Very strange this because this is my dog’s name since you can’t use your own, but since she found the lump, I am sure she won’t mind)
x
Has anyone talked to you about a strattice implant? I’m not even sure I’ve quite described it accurately but this is what I had: I had single mastectomy after chemo and before 5 weeks of radiotherapy.
I was told I could only have an implant due to having lost a lot of weight on chemo, they felt they could not use my own tissue for a reconstruction.
When I had my mastectomy they did an immediate reconstruction using an expander implant. I think they save the skin and add skin from a pig (that I think is the strattice bit) and this strengthens the skin.
They put in the expander implant. During my radiotherapy the I told the RT therapy nurses about this and they had not heard about it. I didn’t have too many problems, a few sores towards the end of the 5 weeks. But the expander implant and the skin have been fine.
Two years on I now am thinking about options to replace the expander. I don’t particularly like my implant but that is different to the fact that it was possible to have an immediate reconstruction with an implant followed by radiotherapy. Perhaps it would be worth asking about this option?
I am not sure if it would be more difficult in the case of a bi-lateral mastectomy / recon, but maybe it is worth asking all the same? Although, as I say, I am not keen on the implant I would say that it has been remarkably trouble free considering the radiotherapy.
If you really want to have rads followed by implants then you can do it… I have had bilateral lumpectomy and radiotherapy and was offered back flap or implant or back flap with implant… A lot actually is down to the skills and experience of the doctor doing the op… My surgeons don’t do tram flap (tummy tuck recon) but if that is what I wanted they would refer me to one of their colleagues… Both my breast surgeon and plastic surgeon are willing and able to do expander implants after rads… Or the LD flap which even though I’m slim they said I have enough back muscle ( personally think there’s more on the tummy!)
With diep it’s similar to tram but whether they can do this after a hyst will depend on the previous surgery and blood vessels used… It needs to have a decent blood supply and this is the reason they would prefer not to do it, my hyst is low down and is just above the pubic bone so they prob would be able to get a reasonable blood supply from there.
My short term plan was to have the implant surgery although my PS says it’s not got such a good shape but had thought I’d go down this route to start with and then maybe go for the back flap further down the line if it needed replacing… As it turned out I got a recurrence so all on hold meantime.
The implant only surgery at the hosp where i get treated uses strattice or permacol which is the pig skin tissue.
As for your question about Chemo and rads keeping cancer at bay… Well in the most instances it does but not always… The more aggressive the cancer… Bigger, more nodes, higher grade etc increase the risk of recurrence but doesn’t mean it def will come back like wise small, node neg, low grade ca doesn’t mean it won’t come back however It’s much less likely to… With a family history your biggest risk isn’t from spread of your original cancer normally but the risk of getting a new one which is around 50% risk of getting a bilateral breast cancer if you have a brca 1 or 2 gene mutation… This is more likely to occur if the first diagnosis was under 45.
As for mastectomy after a second cancer this depends on what you want… I didn’t know I had a gene mutation when I was diagnosed the second time and asked to have them both removed but was reassured it was better to treat the current cancer and deal with ‘what ifs’ in the future… Was just contemplating bilateral mastectomy when I got a recurrence in two chest wall nodes so had them removed and may at some point get around to the mastectomies but breast surgeon doesn’t feel in any rush to do the surgery yet and prefers to monitor me in the meantime.
The surgeon did talk about the strattice implant, but as a vegetarian, I declined that option. Unfortunately he is not back at work until Wednesday, so I am still not able to speak to him.
My questions relating to expanders now are:
How long after surgery were you able to go back to work (I am office based)?
How often did you have the filler put in?
How long did you have to have off work after the final implant and was that an overnight stay?
If you had selective surgery, do you have any regrets?
I’m sorry for keep going on about this. Thank you for your patience.
Hi there
Don’t know if you have made up your mind - i haven’t been on here for a bit so sorry for late reply. I had single mx 4 weeks ago, skin sparing (but not nipple sparing sadly) with a strattice implant immediately. I’m quite small, and was able to have it done in single stage op, no need for expanders, and the implant is the final one, so to speak. It looks ok (odd cf the other, but ok in a bra), if you are having both done it would look better. I wanted to take that option but they would not fund it due to the fact that the other breast is healthy. I’m used to implants as i had them already. In fact it was due to a complication with the implant on lhs that the cancer on rhs was picked up!
I too am an active person, aged 45, main hobby tennis. I did not want to use another part of my body as the muscle is there for a reason. I was worried about being able to do stuff and actually although i still can’t drive (some consultants are more flexible about this than mine - i think i could drive) or lift anything heavy, after 10 days or so i was cooking, doing washing, even going out for lunch. After 3 weeks i was in the gym doing lower body stuff (very tired next day though). I have been going on 2 hour walks too. I’m still sore and get tired quick but so far it has not been as bad as i thought. No tennis yet of coures, and i think the 10K run i’m signed up for in June will have to wait. That said i fully expect to be back at work in 4 weeks. Not everywhere will fund strattice as it is quite expensive, and at the end of the day it does look very different to a normal breast when i am not wearing a bra. But i can wear low cut tops and stuff and it looks fine. I gues you have to weigh it up against the alternative of worrying and waiting…Its a toughy. Wishing you all the very best!
I am in the same boat and around the same age. I decided to have a WLE and take my chances. However it is such a personal choice i would hesitate to give any hard and fast advice. Just to say that although I have lost 4 people in my family to BC including my Mum it does not guarantee that I will die of it or that it will even recur. If you get local recurrence you can always go for a Mx later on. Love to you