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forthcoming mastectomy- advice and reassurance needed please

15 REPLIES 15
Janie123
Member

Re: forthcoming mastectomy- advice and reassurance needed please

Hi Evie,

 

Thank you for your post. It was very reassuring. I actually phoned my lovely breast cancer nurse last Monday as I had read about having temporary implants or an expander at the time of surgery, and I said I felt very traumatised at the thought of coming round from the anaesthetic to no left breast. She booked me in to see a different surgeon that afternoon at the end of clinic.

 The surgeon was really helpful, answering all my questions. I didn't know about the procedure that you have, but I did ask for the options mentioned above. She said there was a one in four chance of complications and she said she was very unhappy about my having an implant at the time of surgery. She also said my risk of recurrence was very high if I kept my nipple. She also said that it has already been decided that I will have radiotherapy after surgery due to the large size of my initial invasive tumour, and I wouldn't be able to have an implant afterwards as my skin won't stretch after radiotherapy, so I can only have a full reconstruction, but as I am quite skinny they may struggle to ' find enough skin' but it should be possible. This was all a bit daunting, especially as it contradicted some of what the other surgeon said last Thursday.

But the upshot is that I have decided to go with her advice and not have any implant at the time of surgery. Also she said I would have to wait ten weeks for radiotherapy, but my oncologist said that it is normally started 4-6 weeks after surgery and I have read that ideally it shoud start within 31 days after surgery. But I will discuss this at my review two weeks post surgery.

It is all so difficult when I am given different information from different surgeons.

Thank you for taking the time to post your advice. The support from all you lovely ladies is making this all a bit more bearable.
Best wishes

Jane xx

Evie-S
Community Champion

Re: forthcoming mastectomy- advice and reassurance needed please

Hi Janie

I hope I'm not too late to tell you my treatment - assuming you are still going ahead on 31 October. I just wanted to let you know that it is possible to have reconstruction with an implant even if you are having radiotherapy.

 

I also had DCIS plus a tumour, and 3 nodes involved too. I had chemo first, then a mastectomy and node clearance and I had an immediate recon with an implant at the same time as the mastectomy. I then had radiotherapy after surgery. There is some risk to an implant with radiotherapy, that it might harden, but I had a "pre-pectoral" implant in something called a Braxon sling thing. Basically the implant goes on top of the muscle, and is wrapped in this mesh thing that helps protect against the effects of radiotherapy.

 

I chose this recon option as I wanted all the surgery at the same time and it has the same recovery time as a mastectomy.

 

As others have reassured you, if you use a prosthesis or similar nobody will know what is under your clothes. I have a prosthesis for my left "real" boob as my implant was bigger than my original and I wanted to even things up in clothes.

 

Please feel free to ask any more questions should this be an option for you - or private message if you prefer.

 

I wish you all the very best for your surgery and recovery.

Evie xx

millymop
Member

Re: forthcoming mastectomy- advice and reassurance needed please

Hi Janie123,

I had a single mastectomy nearly 2 years ago now.  Had DCIS and lymphatic spread.  Actual tumour was small, but I've always had really lumpy breasts and the tests I had prior to surgery weren't clear about the extent of involvement.  this meant that on the morning of my surgery I was given the choice of mastectomy or lumpectomy and biopsies of other suspicious area and possibly a mastectomy later.  I couldn't face the thought of either another op close to the first or being left with a lumpy breast that would always worry me.  So I chose a mastectomy with the promise of reconstruction.  As I needed radiotherapy and chemo would have to wait a year for referrral.

Like you I live in a small village and everyone knows everyone.  I was really worried that people would know I had breast cancer, but only some do.  (Those I have told mainly).  It's only now that I am realising that people really don't seem to know or notice.  The prosthesis fills my bra well and whilst I am about to have reconstruction my chest area, when clothed, looks quite normal, even to me!.  

It really is such a horrible thing to happen to us, and such an important part of the body ( for me at least) that it is very hard not to think everything looks worse than it does.  It took ages, but I eventually bought a swimming costume and went swimming this summer.  Kept putting it off because I thought my lack of a boob would be really obvious....but a swimsuit from asda and a foam prosthesis did the job and really seemed unnoticeable.

Good luck with the surgery

XXX

Janie123
Member

Re: forthcoming mastectomy- advice and reassurance needed please

Thank you Loolarch

It is reassuring that so many women seem happy to go flat. I guess I never expected to be in this position and I feel like I am losing a big part of my identity, but I should think it is still me, and I know my husband, children, family and friends just want to have me around and don't mind how I look!

Best wishes

Jane xx

Janie123
Member

Re: forthcoming mastectomy- advice and reassurance needed please

Thank you pastasmissus

You sound like you have put this all in perspective. It really helps hearing from others who are going through the same thing.

WIth my best wishes to you

Jane

Loolarch
Member

Re: forthcoming mastectomy- advice and reassurance needed please

I had a bilateral Mx at the end of July. I did have some swelling from seroma, but once that died down I was "flat". I am perfectly happy to go flat, and only wear a post mastectomy bra (from Asda) with knitted knockers for work. I'm not even sure why I wear it for work now, but you certainly can't tell the difference with clothes on!  X

pastasmissus
Member

Re: forthcoming mastectomy- advice and reassurance needed please

I had a mastectomy 6 weeks ago, been out with no bra and no prosthesis (although I have a prosthesis) as wound is leaking. Need another mastectomy on the other side in a couple of weeks (found cancer there too...). Planning on going flat, not sure I will bother with wearing prosthetics. Just to warn you, I do look as though I have a moob, it's not flat like I expected!

Janie123
Member

Re: forthcoming mastectomy- advice and reassurance needed please

Thank you for your reassuring post, Feenix. It helped to put it in perspective. After all, the only people who are actually going to see it are my husband and I, and, as you say, the point of reconstruction is to look symmetrical which, in the meantime, I can do with a prosthesis. I have already ordered my knitted knocker after earlier advice.

It has really helped to read all your replies.

Thank you

Jane xxx

Janie123
Member

Re: forthcoming mastectomy- advice and reassurance needed please

Thank you MrsLET

Your post makes sense regarding ducts heading to the nipple. It seems the sensible thing to let the nipple go, and I expect reconstructed can look really good.

With best wishes to you

Jane xx

Feenix
Member

Re: forthcoming mastectomy- advice and reassurance needed please

Hi Janie

I had a single mastectomy 2 months ago. I lost my nipple area when I had my first op (wle/snb). I had a very small invasive tumour, which was within 2cms of nipple hence that’s the reason it had to go. I had a large area of dcis and that’s the reason I needed a mastectomy, after I’d had a further excision to check margins. I was really upset initially about having a mx and I was stressed about having to decide about recon .... decided not to have recon after reading up about it and I’m happy with my decision.

I use a softie or knitted knocker, and dressed you wouldn’t know I was a uniboober. The reason for recon is the same... to make you appear  ‘symmetrical’ dressed. After about 6 weeks post op you can be fitted with a silicone prosthesis.  I have been out without my foob, flat, and I don’t think anything of it. I’ve found it’s all a question of adjusting and being confident.

My surgeon did say if I changed my mind about recon the earliest she could see me was 3 months post surgery as  I’ve not needed radiotherapy. If you needed radiotherapy you’d have to wait at least a year. As you are going to have recon at some point remind yourself that being flat will be temporary and you’ll be able to do everything you did before your mx. It’s surprising how many women are out there who’ve had the same but we don’t know unless they tell us.

I recovered really well post mx. You need to do exercises which you will be given info on.  I had a drain in but it didn’t bother me .. mine came out the day after. I took paracetamol and ibuprofen regularly for the first few days then as required thereafter. I was out and about day after op, with softie in soft front fastening bra from hospital and I didn’t feel self conscious at all. I got back to driving after about 2 -3 weeks. No heavy lifting affected side but you’ll be given info about do’s and dont’s. 

There’s a Facebook group called Flat Friends, for women who have had mastectomies without recon, which is very supportive. It’s also got a closed group if you wished to join whilst waiting for your reconstruction. Ellen you will find this group helpful also as there are lots of women living flat after bil mastectomy.

Wishing you both the very best for your surgery and results.

hugs xx

 

MrsLET
Member

Re: forthcoming mastectomy- advice and reassurance needed please

Hi Jane, I had DCIS, although i was lucky enough to have immediate reconstruction as I didn’t have any invasion. However the the nipple, mine couldn’t be saved as where DCIS is in the milk ducts, mine seemed to start touching the nipple and head back in, if you see what I mean. I guess all ducts head to the nipple so if it’s close, they do need to take it away. I will be offered a reconstructed nipple in 12-18 months if I want it.

Wishing you all the best with your surgery xx
Janie123
Member

Re: forthcoming mastectomy- advice and reassurance needed please

Thank you Sally for your advice. You sound very upbeat. I shall have a look at that website. 
Best wishes

Jane 

Janie123
Member

Re: forthcoming mastectomy- advice and reassurance needed please

Thank you Ellen

I feel for you too. Good luck with your operation too

Jane xx

 

SallyG63
Member

Re: forthcoming mastectomy- advice and reassurance needed please

Hi ladies,

I only had a single mastectomy with no reconstruction. I was due to have an implant reconstruction as I don't do 'ill' and wanted the shorted recovery time . Unfortunately that went off the table 2 days before surgery due to skin involvement . I have to say though that the recovery
Was pretty quick and easy. I was back to work two weeks after. I had to have a second op cos they couldn't get clear margins first time. They'd not have been able to do that if I'd have had reconstruction. I think they say a year because the scar and surrounding tissue has to settle before they start messing about with reconstruction. Get yourself on a charity website called knitted knockers and order yourself one. Once you are in clothes no one will know it's false.
Ellen
Member

Re: forthcoming mastectomy- advice and reassurance needed please

I completely feel for you Jane - I was also told on Thursday, after my 8th chemo session, that I will need a double masectomy and they have advised against the skin sparing as I have multicentric breast cancer - i.e. lots of little ones as well as a few large ones - which are all gone now due to chemo but I think I am high risk of it coming back so that is why they have recommended the double masectomy.  I've been told they can do reconstruction after a year.

 

I am also devastated and terrified.  Is there anyone on this forum that has had a double masectomy - any tips?  I think my operation will be at the beginning of November - around 7/8 November as they have to wait 3 weeks after the chemo.

 

Any advice would be most welcome.

 

Thank you,

 

Ellen

Janie123
Member

forthcoming mastectomy- advice and reassurance needed please

Hi everyone

I have recently finished my sixth and final neo-adjuvant chemotherapy, and next step is surgery. I had a 9cm area of the non-invasive dcis, and a 5cm invasive tumour. They think that all the invasive tumour has gone ( or it is less than 5mm) but chemo has no/ little effect on the dcis. My oncologist had said I may be offered a lumpectomy with radiation, or mastectomy. I agonised over my decision, but when we went on Thursday the surgeon said that due to the size of the dcis, mastectomy is the only option. This is scheduled for 31st October. 

The nodes did not have any cancer on the initial biopsy. Once the breast tissue has been analysed, I will have an appointment two weeks after, and, if there is no sign of invasive tumour, and the four lymph nodes they will remove are clear, then I won't need radiotherapy. Because of the possibility of radiotherapy, they won't offer immediate reconstruction. 

Initially, I took it all really well. No tears. But now, two days later, I feel devastated and keep crying. I asked about preserving my nipple but the nurse said they prefer to remove everything. Does anyone know if preserving the nipple increases risk of recurrence. If I don't need radiotherapy, does anyone know if it is possible to have reconstruction two weeks after mastectomy or do you need to wait for healing? Also, due to my work as a dentist I am opting for an implant reconstruction to avoid arm damage. They don't seem keen on skin-sparing, so I think I have to have my skin stretched in any case, over several months. Does anyone know if this can be started two weeks after the mastectomy?

Finally can anyone give me some positive encouragement? I live in a large town where everyone knows everyone, and I have been a dentist here for over twenty eight years ( I am 51), and I just hate the fact that everyone will look at me and know I have only one breast. I feel guilty that I am agonising over cosmetic appearance when I should be grateful they are saving my life ( which I am, but I hope you all understand).

Thank you

Jane