Hi - help please - before 3pm tomorrow! Have been diagnosed with DCIS - 8cm area and some of it high grade. Met my surgeon a couple of weeks ago and she said I would need a mastectomy. She asked whether I had thought about reconstruction and seemed surprised when I said yes (to the extent I knew about it - had not been given literature at that point and at my initial mtg it had been suggested I would probably have a lumpectomy).
She was very negative about it - said it was a much longer operation and not appropriate as I have rheumatoid arthritis (even though that has been in remission for years and I only take anti-inflammatories). She also said it would be difficult to achieve symmetry - am a 36F. Though to my mind anything would be better than an empty space on one side. She offered to do a reduction on the healthy breast at a later date.
I’m really confused and upset by this advice. There must be some other factor apart from my RA I’m not being told. My age (59)? Am seeing her again tomorrow afternoon and still not sure what to say. Am willing to go without immediate reconstruction but only if I get some commitment to a delayed one. Or understanding of why it isn’t suitable for me. Am a non-smoker, overweight but not obese (bmi 28), other health issues are all in the arthritis family ie joint/tissue related - blood pressure etc all fine.
I am at the start of my journey and won’t be able to give full advice but I am sure a few ladies will jump in soon!
I was diagnosed early January and initially told I would have a mastectomy on my left breast due to the size of the 2 tumours stage 2 and 3 IDC, followed by chemo etc, to be told a totally different story very recently.
I was asked about reconstruction straight away and this is is such a tough and personal decision to take. My surgeon thought it would be an option as my breasts are dense, 34EE, symetrical etc. I am 50 only and you are still young too. I spent quite a bit of time thinking about reconstruction and decided I would not do it straight away, but would consider later given the risks, potential complications and the time of the operation which is like 6-8 hours with a long recovery time.
Things have changed since, and 2 more tumours have been found at PET scan stage, so 9cm tumours in total. Now I won’t have a mastectomy first. I have started just EC chemo, followed by Taxol and phesgo, which will take 5 months until the next step which will be mastectomy.
I would be you I would ask a lot of questions as we all deserve answers, and possibly ask for a second opinion. It may be that your surgeon is not confident with larger breasts but I can’t see, from what I have read and you have shared, why you would not be able to have reconstruction.
Don’t take a rushed decision and weigh the pros and cons, and if a delayed reconstruction is an option it could give you more time to reflect, do some research, get opinions, and make sure you are taking an informed decision. Doctors tend to have little emotional skills and treat us like machines! And also poor communication generally.
I feel for you, its such a hard time and unfortunately some medical professionals often cause confusion and upset by not providing you with all the info. This is a big decision but your decision and reconstruction sounds possible for you and it would be perfectly understandable for you to enquire more about your options. There are various methods of reconstruction for example implants (shorter operation) as well as using tissue from other parts of your body.
I hope your appointment goes well tomorrow - remember ask as many questions as you like and if after tomorrow you still feel unsure, you can ask to be referred to a different surgeon. It’s really important to trust whoever is carrying out your surgery.
Good luck … let us know how you get on xx
Hi @lolac
Sorry to hear that you are confused by the advice you’re being given. I like you have high-grade DCIS which following a lumpectomy and re-excision I have now been advised to go for a single mastectomy and have opted for the long operation of a DIEP reconstruction. It is a lengthy surgery up to 8 hours, and as I have been advised it will have a 6 to 8-week recovery plus further small surgeries to adjust and create the nipple. I was also, offered the option of implants as which was tempting as it is a shorter operation, with a quicker recovery, maybe that is worth considering if it is the length of the surgery that they are concerned about?
I spent a lot, of time asking my consultant and BC nurse questions whilst considering options. My advice would be to go in with a list of questions and consider the options carefully, I feel for you as it is such a difficult decision to make, I hope tomorrow’s meeting is positive and helps inform your decision, let us know how you get on…
Thanks for replying Marion and I’m really sorry to hear about all you are going to. I do appreciate how fortunate I am having the cancer identified at such an early stage.
You’re absolutely right in your assessment of some medical professionals- I did feel rushed at my last appointment and probably didn’t get through all the questions I wanted to. She was a bit brusque - I tried to open up my list of qs on my phone and said I wanted to write things down on it - she seemed impatient and said I didn’t need to write anything as it would all be in the follow up letter. The main point I’ve taken from all the replies and discussions with friends is that I need to make sure all my qs are answered tomorrow.
Thanks again and hope all goes well with your chemo.
Thanks for replying and good luck with your op. We did talk about implants - she was particularly negative about them! She said they often weren’t comfortable, needed regular replacement etc…(I read her reviews and was slightly surprised to see a couple from private patients declaring how happy they were with their implants!).
I will make sure to get all my qs in tomorrow (husband is up to speed and also prepped to ask anything I forget). Thanks again for replying - will let everyone know how I get on.
Hi just been reading the thread. I have only had a lumpectomy myself (in December) but my sister 14 years ago had a mastectomy for DCIS. She wasn’t impressed with the surgeon at our local hospital so she chose to go elsewhere and had a mastectomy with an implant which she was really pleased with. My point is i think you can still choose where you receive your treatment so if you feel like you’re not being listened to you could potentially research other hospitals and surgeons. Best of luck for tomorrow.
So sorry that you are having problems with your surgeon.
I found the Breast Reconstruction booklet really helpful as was talking to the nurses on here.
My consultant is reluctant to do an immediate reconstruction as I will probably need radiotherapy post surgery.
Good luck for appointment. I hope that you get the answers that you need.
Thanks for replying - as it happens the BCN mentioned I could change surgeon when I phoned her with the same queries I put on here. I was a bit surprised as I hadn’t been complaining about the surgeon - just asking questions about why she’d thought reconstruction would be difficult for me. She encouraged me - as all of you have done - to make sure I didn’t leave today without having all my questions answered. I should add that I’m not a shrinking violet! I’m sure all of you will appreciate that it’s sometimes difficult to get your brain in gear and ask the right things when you’re basically in a state of shock! Am much better prepared for this appointment.
Thanks Holly - I was given this by my BCN after my last appointment and agree that it’s really useful. I definitely feel more prepared to explore options than I did before.
I had high grade DCIS in a 6ish cm mass. My surgeon asked me if I wanted a recon. at the same time as my mastectomy in January 2021. I said no.
She was relieved and said so; due to the size of thr mass and the area that rads would cover.
Turns out a blessing. The was was larger than all the scans shown - about 9cm.
Sometimes, I think i want a recon but 99% of the time I don’t. I get on perfectly well with a falsie and no one can tell. It’d just be nice to have a flat tum as the surgeon said that
my tummy fat could be used!
Having said that, everyone is different and I hope you get/got the outcome you want.
Thanks Gelbel. By way of update another rather odd mtg with my surgeon yesterday. Firstly- and I should have mentioned this - in the letter after my last appointment she said I had high blood pressure. I explained that I didn’t and never had had. Why are you taking amlodipine then? As a prophylactic for vestibular migraine. Oh I see - I’ll correct that. It seems really odd for her to make an assumption about a condition just from my medication (did she think I’m an epileptic because I take Baclofen which it’s traditionally prescribed for - but in my case another vestibular condition).
Anyway to the reconstruction. I said I’d be happy to have just the mastectomy in the first instance and a delayed reconstruction. So wanted to better understand her reluctance re reconstruction. She immediately said she’d refer me to the plastic surgeon to discuss - if I wanted a reconstruction it would be better to do it at the same time as the mastectomy. My flabber was truly gasted! Why I ask? Because a later reconstruction couldn’t be guaranteed it would be so deprioritised by the hospital once the cancer was out. If it happened at all it could take years.
So I’ve agreed to the appointment with the plastic surgeon. I should say she was perfectly nice about all this - her manner a little less brusque than at the last mtg (though my husband felt that once she’d offered the appointment with the plastic surgeon she was keen to close down further discussion). And she emphasised that though my area was larger - what was described as 8cm last time was 10cm this time (!) because it was non-invasive I shouldn’t worry about a little delay.
So I guess it is a good result - just after two weeks of persuading myself that delayed reconstruction was the better option to find I’m back to immediate reconstruction is playing with my brain!
Hi Lolac and sorry to hear you are having all this trouble.
I had a mastectomy in August due to 8cm of DCIS. Immediate reconstruction was an option I was offered from the outset - although my options were limited to silicon implant as I am quite skinny.
The results dressed are very good as the surgeon has achieved symmetry. I don’t like it naked as it hasn’t got a nipple, is a much more solid feel than the real breast and because I am skinny, the edges are very visible and it sort of wrinkles if I bend over.
It also gets very cold if I am outdoors in the winter weather - but as I don’t have any feeling that side it’s not a problem
It wasn’t painful after the op - just uncomfortable due to having a drain for two or three weeks.
Overall I am glad I had it done
I hope you feel you are being offered choices so you can make the right decision for you.
Thanks Cosmos2 - glad you are happy with your outcome. I went to a really good breast reconstruction awareness session at our Maggie’s centre. There was an amazing group of women showing off their reconstructed boobs and talking about their surgery. Really convinced me that this was the best option for me (and a couple of them had been operated on by the same plastic surgeon I am seeing next week). So overall feeling more positive.
Oh dear - from positive to in tears (in fact the first time I have cried in a mtg with a medic - didn’t when I got my diagnosis or when my breast surgeon said I had to have a mastectomy rather than lumpectomy). After a lengthy history taking and physical examination, mainly by the registrar, the consultant then just announced that he couldn’t do anything for me. No cushioning the blow, no explanatory leading up to that. He did then explain himself - my spine surgery which was through my abdomen meant they couldn’t use my belly tissue. My frozen shoulder (same side as breast) meant they couldn’t use my back - reluctant to cause any further problems by using other side. My mobility issues, largely a balance condition, but also hip and back problems, meant they’d not want to use thigh or bottom (I wasn’t really persuaded by this). And in general because of fibromyalgia and all the other health stuff going on he’d be really worried about complications, difficulty with drug regime for pain etc.
So back now to the breast surgeon for a discussion about an implant or just going flat. I know cosmos2 had an implant so helpful to see her reply - I’ve spoken to a couple of other people who ended up having theirs removed. My breast surgeon was also v negative about an implant (for me) when we first met. And now just feel like I’ve wasted weeks and am probably back now to having a mastectomy and going flat.
Sorry for the moan - I know there are many people in here in a much, much worse position than me. It just feels like having a leg amputated and then being told you can’t have a prosthetic (not the best analogy as of course I can have a prosthetic but you know what I mean). Can’t stop crying and feel pathetic- it’s just the whole rollercoaster thing messing with my head.
Sorry to hear what you have been through, I can imagine it’s very frustrating so no wonder you were teary.
This forum is a safe place for you to have a moan, so carry on. I’m not in your situation as I’ve had a double lumpectomy but I am awaiting genetics testing and there could be more surgery if positive, so very keen to follow the stories of ladies like yourself.
I suppose one option you have if you don’t get anywhere with your breast surgeon is to ask for a second opinion. I know these HCWs deal with loads of ladies with breast cancer but we are all individuals and feel different about going flat v reconstruction. I know I view my body differently after my surgery. I had my surgery in July, followed by Chemo and radiotherapy and continue with Herceptin 3 weekly. My scars are fading but my thoughts are not.
@lolac really sorry to hear your update, i can fully appreciate your disappointment and frustration. I don’t know if this helps as i was offered an implant rebuild and discussed with my surgeon that the implants have improved alot but do need replacing after about 15years.
It is difficult for us all coming to terms with our changed bodies and only natural to be upset scared and to need a rant, over the last few months i have done plenty of ranting, and crying. We understand so don’t keep it to yourself and express yourself in this space or too friends.
Thanks summersun and naughty_boob for replying and being so empathetic. I’ve also had some good advice from a Facebook group for women who’ve had breast reconstruction in the Oxford area. Feel better prepared now for a discussion with my breast surgeon about my options.
Final update - for now anyway. I’m having a mastectomy with immediate reconstruction with an implant. My surgeon still didn’t seem v enthusiastic about doing it (lots of dire warnings about failure rates). But has agreed to go ahead. I’ll have a reduction on the other side in a later op. Only complication now is around timing. Provisionally booked for 3 May but I have to have a hysteroscopy later this week - had one back in October for post menopausal bleeding. Biopsy was clear but because the bleeding continued I need a repeat. And my surgeon won’t go ahead without the biopsy results so fingers crossed they’ll be in time.