should I have a mastectomy?

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1

Hi

I’m 36 and have recently been diagnosed with DCIS. I’ve already had a WLE, but they found ‘high risk’ cells on the borders.

I’ve discussed the possibility of a further excision with my surgeon, and ruled it out for many reasons (including, five years tamoxifen VS my wanting to start a family soon, LD Flap reconstruction, which I don’t like the sound of at all, especially as I’m quite sporty).

The surgeon is advising a mastectomy, and if I’m going to have surgery then that’s what I’ll have.

…but I can’t quite help wondering if I have to have anything done. You hear that women are often ‘over-treated’ for DCIS, as in itself it is harmless, and develops into invasive cancers in only (I think roughly) between 30% and 50% of cases.

Maybe I’m just being cowardly? But I find myself wondering, Couldn’t we just keep an eye on it? Do I really have to lose my breast? Now? I’m still using it!

I know they can do amazing things with reconstruction, even creating a new nipple - but it’s the loss of sensitivity in the breast and nipple that really upsets me.

I’ve seen some things about ‘natural’ and ‘holistic’ ‘cures’ for cancer, and it pretty much sounds like so much snake oil to me, but I wonder, should I at least *try* something else before letting them cut my breast off??

What I really wanted to find out is how other women in the same position as me felt about it, what decisions they made, and whether they regretted any decisions about their cancer treatments, or if they think they did the right thing?

If anyone can share their experiences with me I’d be really grateful.

Thanks for taking the time to read.

Since writing this I’ve found some other relevant topics to read (I did look first, but didn’t find them!), so sorry if I’m retreading the same ground.

One thing I wonder is how we will ever achieve greater understanding of DCIS and how it develops if everyone diagnosed has their breasts lopped off??!!

How accurate can any stats be considering that more and more DCIS is diagnosed all the time due to increased mammograms, but I would guess very few are left untreated, and of those, are any of them being formally studied??

In fact if anyone knows of any ongoing studies in this area I would be very interested in that.

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elwood

Please search for previous related posts by Snowwhite who has done some research in this area and written on these forums about this. PM her if necessary.

Many women are gung ho for amputation and it is often really unnecessary and in fact nearly all BC surgery is diagnostic and some of it is precautionary. In France surgeons are more apt to preserve the breast where they can, whereas here they are more likely to encourage removal of the entire breast; it’s easier for them and whatever they do, they do not have to deal with the emotional fallout.

On DCIS specifically there are articles and papers that you can Google. Professor Mike Baum has written quite a bit and also, I think, Hazel Thornton. Cancer Compass may have some abstracts or entire papers. This topic has come up before on these forums.

I suggest you Google a question and see what results you turn up.

What about quadrantectomy? It would mean less drastic subsequent recontructive surgery if you decided to go down that route. I have posted like a broken record on the topic of LD flap so I’m saying no more about it.

I think on BCPals there will also be some writings on this topic. Sign up and join their forums; they are very good and more secure than these here.

I hope this helps a little anyway.

D

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My case was DCIS/IC caught on routine screening (52yrs) so very different but mine was also ER Positive. I wondered if you could be tested early or if there is a test for early cell change to find out. I wonder because you want to have children and in some circumstances this will increase the rate of growth (if any) of the cell change to tumour.

I really think that you need to get your list of pros and cons together but overall choose life - I had a very good team and they did the very best - I had mx/SNB and didnt need chemo or rads. I was also grateful that if a part of me would be missing it wasnt my eyes, hearing or a limb. Its a personal choice.

Wishing you the very best.

Dx

4

Daisy

You seem to be inferring that you’d rather have had your genitals mutilated than lose e.g. a leg. Both have separate and different functions and so, I would suggest, are not a reasonable comparison.

As for choosing life, then is that life at any cost, at any price? That is how the medical profession see it but then they are not paying the price.

Anyway, that would be another thread entirely - “did you feel it was worth the price you have had to pay?”

Another time perhaps …

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I do think its an individual thing. Both my parents died of cancer when I was young and the deciding factor for me was a month old grandson at the time. Life is my grandson. There was no price to pay as I never saw it that way. I was grateful it was found, grateful I didnt need to have all the treatment so many others have and grateful to have such support from family and the ladies of this site. I am now grateful to have returned to work and feel so fit and well.

I am not angry or bitter just realistic in taking my age, my needs and the consultants feedback into consideration.

Yes it would absolutely make a terrible difference to me if it were a limb or worse my eyesight and not see my grandson or the one thats on the way. My mum never saw my children and I didnt have her for 30 years.

It is a very personal thing and we each do what we think is best as no one can tell us one way or another.

I wish you well with your decision making and success with all your treatments.

Dx

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Hi Elwood,

I really sympathise with you - had to make the same decision myself a couple of months ago. There is no easy answer and, as someone pointed out to me, it is all a matter of compromise.

I know from this site that there is a lot of mixed opinion about LD flaps. Just for info I had an immediate LD flap recon and, so far (6 weeks) everything seems fine. I am a reasonably active person(jogging, swimming, aerobics) and am hoping to get back to my pre-op level of activity as soon as realistically possible. I understand about your concerns re loss of sensitivity, as I feel the same, and I am still ‘making friends’ with my recon.

I have to be disciplined about doing my post-op exercises and extra stretching to improve my range of movement. Obviously I can’t yet speak about longer term effects.

All I can say is do as much research as possible, talk to people if you can (I used the one-to-one peer support system here, and found it really helpful). I think you can only prepare yourself for this tough kind of decision making when you gather as much info as possible first.

I almost decided against the surgery. A friend, whom I love very much, just said “Look, this man (surgeon) might be saving your life and I am grateful for that”. Kleenex tissue moment!

I wish you all the best in making your decision, and for a successful outcome. x

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Gardengirl

Glad to hear that your LD may have been successful and look forward to hearing that you can still swim, lift saucepans, have full range of movement in your arm and can do everything now that you could before the op.

It is not likely, in this case, that surgery would be life saving, that is, in MY opinion, an exaggeration that is propagated by both patients and surgeons alike. It is highly PROBABLE that the combination of all components of adjuvant treatment (and the component differ for patients) will prolong life if it might otherwise have been shortened. Maybe it will not be shortened if the surgery is not radical.

The only situation is which this surgery will save life is when it is confirmed by more than one surgeon (2nd and 3rd opinions) that “you will die if you do not have this surgery” and I should think that is quite rare and may apply to women whose disease has spread within (vascular invasion) and beyond the breast, not those whose disease is contained within it.

Surgeons’ behaviour will always be cautious and with litigation in mind these days. They will also subtley manipulate our behaviour so that we largely comply with their unspoken or spoken wishes. After all they do not want us coming back saying “why didn’t you tell me to have it removed??” if they do go for the next level of surgery and still don’t get clear margins or if the breast is preserved and a recurrence occurs. There is a lot to consider but once a surgeon gives his opinion (and a lot work in entrenched ways) then the patient will probably be obedient and deferential and “tow the line” because that is how people usually behave when dealing with the medical profession.

Reg.

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I’d agree with Regina that a second/third opinion might be helpful but ever case of DCIS/cancer is different and ultimately, I preferred to put my trust in a doctor that I respected for one of the frightening things about cancer is its ability to behave in unpredictable ways.

Anyway, just wanted to say that more doctors are now practicing skin-sparing and nipple-sparing mastectomies. I retained my nipple and the only visible sign of my mastectomy is a thin white scar leading to the armpit. I had an implant put in straight way and the surgeon didn’t use any back muscle so if I was sporty (I’m not…) it wouldn’t have made a difference.

There is some loss of sensation around the breast and nipple but to be honest, that doesn’t really worry me - as far as I can tell, some women don’t lose sensation, and others do…

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Hi
I was diagnosed with widespread DCIS end of April this year. I had a mastectomy in June. At the time I did not consider any other option. I would prefer one breast and the certainty that I do not have breast cancer, or anything that could develop into invasive breat cancer. (I have lost two members of my family to breast cancer). I was offered reconstruction - but chose not to have it. I did not want to be in hosptial for any longer than necessary. I recovered quickly. I am happy with my prothesis. I know people can’t tell which is the real breast (even my hubby gets mixed up soemtimes). Six months on - I feel well, but get tired, have been back in work since the end of July. I play badminton every week, and now go swimming weekly too. Sometimes I also go to the gym.
Whatever you decide - I wish you all very best.
Liz

10

thanks all for sharing your thoughts. I have *so* much to read!
I have seen some of Snow white’s posts when I was looking around, and I will search out some more.

It’s almost two weeks since the surgeon first said ‘mastectomy’ to me, and at first I was numb and devastated, then I went into some sort of mindless victim mode, where if there’d been any hurry about it, I probably would have just let them go at me, thinking that I had no choice. I’m only just starting to wake up from the shock, and realise this is *my* body and *my* choice.

I might well end up choosing the mastectomy - but not until I’m convinced of its necessity.

Best wishes to all of you, and hope you continue to do well :slight_smile: