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Surgery options reconstruction - any advice/help please?

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dclem4
Member

Re: Surgery options reconstruction - any advice/help please?

Hi Fuffs123, yes Paget’s seems to be quite rare and not really well understood due to lack of research numbers. I think being lopsided is my main concern re Brad etc and can completely understand what you’re saying about going flat, I’m 63 and I think only you can imagine how you will feel, your OH might be worried about you but also he might be feeling anxious about his feelings too? I think as long as I look ok in my clothes and a swimsuit, regardless of what’s happened underneath then I’ll be fine.
I’ve got lots to think about with all the really helpful replies. Wishing you all the best with your surgery and whatever you decide in the future, stay well🙂

dclem4
Member

Re: Surgery options reconstruction - any advice/help please?

Hi bookish, that really helps, hadn’t thought of the before/after situation if only one boob done. I’ m interested to hear that having had the reduction you feel more normal size wise as I think part of me also feels it would be good to have a more normal size which would defo make bra shopping easier. I’ve been training myself to sleep on my back as after large volume biopsy I had lots of bruising and swelling and couldn’t sleep on my side so thankfully that part should be ok. 
thank you fir your insights, really helpful🙂

dclem4
Member

Re: Surgery options reconstruction - any advice/help please?

Hi Seabreeze, thank you so much for sharing your experience, that’s been really helpful, all the points to consider will help me think this through.
Gosh you’ve had quite a journey, reading the stages explained so clearly has really given me insights I hadn’t even considered including that reductions might be off the table at a later stage or be less available due to COVID pressures. I too have really sensitive skin and didn’t feel comfortable with the top up prosthesis idea but I know that’s an option, hearing your experience makes me wonder if it will work for me? tbh bras are a nightmare for me right now, they never feel comfortable, I’ve ordered two for wearing after surgery and am hoping they will fit, obviously more bigger busted ladies than I thought having issues as manufacturers often stop at a D/E cup making a stressful situation even worse. 
I’m going to try list my feeling about all you’ve mentioned and will get back to you if I have any more questions. 
I’m so glad you’ve got to where you feel comfortable, even if it took a long time to get there! Stay well🙂

Fuffs123
Member

Re: Surgery options reconstruction - any advice/help please?

Hi dclem4

You are one of the only people I’ve found that have been diagnosed with Paget’s Disease, as I was in 2017 and I’m also big boobed (H cup)  Briefly, I was diagnosed with ER+ IDC in Jan 15, not spread to nodes thank goodness  I had 3 lumpectomies and managed to get a clear margin after no 3, then had 25 rads, no chemo  A fes months later I noticed some bleeding and crusting on the nipple on that side and after a biopsy it was found to be Pagets, with quite a lot of suspicious changes behind it  Mastectomy was the only choice then really, which I accepted as necessary  I wasn’t offered any sort of reduction on the good side and I decided not to go for any sort of recon on the Mx side as I was uncertain about how I felt  Fast forward to now and I’ve had a lot of problems on the remaining boob side, neck and shoulder pain due to weight of rH cup boob  Also the large prosthetic I have to wear on Mx side is not very comfortable especially in the summer and I have a problem getting a bra in an H cup that it will fit in properly. For some reason, manufacturers don’t seem to think that H cup and above ladies have mastectomies! I now have moved to a different part of the country and my new surgeon is very supportive of my desire to have a Mx on remaining side but I had to have a discussion with a clinical psychologist first which I have now had. I have decided at this time to go completely flat and tbh it will be a relief not to have the one big boob and flat on the other. It is of course a very personal decision for anyone and you have to reach a decision that you’re comfortable with. I am 67 and have no problem with my body image flat but I have to say that my OH of 43 yrs is more concerned that I might regret it later. I’m sure I won’t but I will have the option of implants later if I do. Wishing you well.

Francine x

 

bookish
Member

Re: Surgery options reconstruction - any advice/help please?

Hi dclem

My situation's not quite the same, but I'm a yes to your direct question: halfway through a 2-stage bilateral mastectomy, so it will be reconstruction on both sides come Jan. So far I've had the breast reduction part (and a lumpectomy beforehand) - gone from a 34H to probably a C or D, not quite sure yet. Tbh it's been a relief to be a more normal size!

Excellent advice below, but just to add: I've been told that it can be easier to do both at the same time, in terms of maintaining symmetry and such. I think I found it easier mentally to just have both done together, only one recovery (well, per op stage, rather than per boob!), and not having that easy compare and contrast view - they look fine, scars are all very neat, but I think it helps that I've not got a visual of the 'before' every time I look.

Only downside I've experienced is sleep: I never sleep on my back, and now I have to! With the lumpectomy (on one side) I at least had the option of rolling onto my side. But that's temporary and already easing.

Very best of luck, these are big scary decisions and I often think there is no 'right' answer, just what you're going to be most comfortable with.

Seabreeze
Member

Re: Surgery options reconstruction - any advice/help please?

Hi dclem4,

No wonder you are feeling a bit overwhelmed, as if the diagnosis isn't enough, working out what approach to reconstruction is right for you can be hard in the early days. And I'd emphasize what's right for you!  While I'm not scared of having anaesthetic it does make me really sick so I understand your thoughts about reducing the number of op's. 

I didn't have a reduction on the other side at the same time as a lumpectomy (it wasn't offered at the time), so had lumpectomy, rad's then reconstruction/reduction later on. Happy to run through my experience and thoughts/considerations for you and anyone currently in your position. 

Diagnosed 2014 with invasive bc. 34G on my non bc side, a tad smaller on the bc side.

Had lumpectomy and sentinel node biopsy (3 nodes removed - thankfully clear). I'd had severe swelling and bruising after the initial core needle biopsy (which for any newbies reading this, is extremely unusual) which meant I'd adopted Quasimodo posture to protect the painful side in the weeks before the op, which I think resulted in my having more nerve pain than usual after the lumpectomy. 

I don't think I lost much volume by rad's. However I understand that due to the radiotherapy potentially causing some fibrosis of the tissue, if one loses or gains weight in the future, the breast which had the rad treatment is less likely to get bigger/smaller with weight change than the non rad side. (So if you are planning any significant diets this might be a consideration re timing of a reduction)

Bc side ended up approx 34DD or E - to be honest it was a bit difficult to know since I was so wonky the only bras I could wear had to be extremely forgiving given the 34G other side and even then twisted round and pulled hard on one shoulder.

It is possible to get a prosthesis breast form (supplied by the NHS), which sits over the smaller breast (they are not just for mastectomies). After quite a lot of toing and froing to get the right size (and feeling much better about the thought of being more even) on first wearing I developed a bad itchy red skin reaction to the prosthesis. The fitter at the hospital had been in her job for over 20 years and said she'd never seen such a reaction (I think I must have mega-ultra-sensitve skin), so I was told not to wear the prosthesis. I should add the shape given by the prosthesis was fine.

So back to being wonky full time, which besides meaning I lived in loose tops (shirt buttons hung wonky too, so they were out even for work), I found being a G on one side and much smaller the other side really uncomfortable. The uneven weight started affecting my posture, back and shoulders, with pain. It was at that stage I started thinking seriously about a reconstruction/reduction. 

Role on reconstruction/reduction op - approx 2.5 years after the first op. From the point of deciding to have this op I had to wait quite a few months since the hospital understandably prioritised direct bc op's, only doing reconstruction reductions one or two days a month. I was also informed the op might be rescheduled if they were suddenly inundated with new bc patients.   

The reduction op - ask the surgeon how they would do this. Usually they go round the nipple, down from the mid centre of the nipple and if need be in a curve under the breast, depending upon the volume to be removed. After any breast surgery there is usually swelling which can take quite a few months to go completely. My surgeon told me that during this time some people lose breast cells as a result of the surgery, so after the swelling goes the breast can end up smaller (than if no cells had been lost/died after surgery).

My surgeon didn't want to risk removing too much (in case I lost breast cells after the op). It turned out I wasn't someone who lost any/many cells post op, so after waiting months for all the swelling to go I found I was still quite lopsided. 

Recovery from the reduction is much easier than from lumpectomy. Significantly less pain, my breast care nurse said this was due to the surgery not being so invasive (as to get in behind the cancer with margins).

So role on 2nd reconstruction/reduction op - 1 year after the first (3.5 years after diagnosis)

Day of the op - Turned out I had a temperature and my surgeon was unwell/sick (she had hoped the other surgeon might be able to fit me in - they couldn't). So after all the pre-op checks I was sent home from hospital without having the op. Rescheduled for 1 month later (thankfully employer understanding of the date shift).   

Outcome

Really pleased with the result - my posture has corrected, I no longer get shoulder and back pain. While I'm not perfectly symmetrical its near enough to be able to wear normal clothes, I don't feel so uncomfortable and I feel much better in many ways.

The scars have faded well (almost invisible on the bc side) and pale on the reduction side.

Summary of consideration factors / points you might want to discuss with the surgeon/onc:

  • By having any breast surgery near the nipple one tends to lose some sensitivity. Worth weighing up re what's right for you reconstruction/reduction given the Pagets the other side.
  • The recovery time for the non-bc side will most likely be much less than for the bc side - you might want to ask the breast care nurse. That might make it easier to consider getting the reduction done at the same time as the bc removal?
  • If they do the reduction at the same time as the bc removal you might avoid the risk of having 3 op's like me (1 bc removal then 2 reductions other side due to me not losing cells/cells dying post op). Again might be worth asking the surgeon if that might be a risk in your case.
  • Do you intend to change your weight over the next 12 months or so? If you plan on going on a diet you might want to wait until after the weight loss? 
  • Would a prosthesis be an option for you- how would you feel about that versus surgery both sides?
  • With all the pressures on the NHS (prior to covid let alone during covid) it might also be worth asking if the surgeon thinks there may be any chance the NHS may stop doing reductions in the future (I recollect there was a women on the forum a few months ago who was struggling to get this after the initial bc treatment, although there may have been other factors).
  • Are dates of a future reduction op vulnerable to rescheduling (prioritising new bc diagnosis ops and re wider impact of covid on NHS)? If so how vulnerable? How would this make you feel and fit with your life/job/personal situation etc? 

More than happy to clarify any of the above or answer any q's.

You are welcome to message me directly too if if helps to talk it through (off the public forum screen). 

Sending you a virtual hug.

Seabreeze (now 6 years on) x  

 

 

 

 

 

dclem4
Member

Surgery options reconstruction - any advice/help please?

Hi I've recently been diagnosed with Paget's disease in my left nipple (size 32G breasts) with another precancerous area about 0.5 com in from the nipple. I've been offered two surgery options, one to remove the nipple and other area and do a bit of moving of tissue about which would leave me with no nipple but a decent cosmetic look albeit potentially smaller than my other breast after radiotherapy.  This could be corrected about a year later. Second option is to have both breasts reduced slightly to a 32E (that's not a concern) at the same time, possible slight reduction in left breast after radiotherapy but assured unlikely to be very noticeable as most peoples breasts are not symmetrical anyway. Has anyone had the reconstruction of both breasts at same time? I'm terrified of anaesthetics and not keen to have two separate operations but not sure if I'm just being silly? I've seen three different surgeons as been passed about and had four different breast care nurses and I'm feeling a bit overwhelmed today. Thanks for any advice/help.