Prophylactic mastectomy after DCIS and what are the stats for BC in the other breast?

Hi
Has anyone else thought about having a prophylactic mastectomy in their ‘healthy’ breast after mastectomy in breast for DCIS?

I had high-grade, multi-focal DCIS this time last year and had a mastectomy but am now thinking about a prophylactic mastectomy in my other breast because, bascially, as I am quite young and have small kids, I want to survive for a very long time and just don’t want to risk having BC in the future.

My consultant said I now have a 20% risk of BC (the risk in the general population is 10% apparently) but I don’t know what that actually means as I have seen different stats discussed on these forums for more serious cancer diagnosis. Does anyone know any more about this?

I asked my consultant: what are the stats for younger women with DCIS (I’m now 43 but had the symptoms - misdiagnosed - of DCIS for some years) and he said he just didn’t know. I wonder if the younger you start BC the worse the risk, as something has obviously gone very wrong to have cell changes or ‘pre-’ changes before menopause. All I know is that if you get invasive bc when you are young it tends to be very aggressive and that scares me.

I don’t think I can live with a 20% or 1 in 5 risk of BC. And I am beginning to see my ‘good’ breast as toxic and something to be afraid of. I thought I might grow into the idea of reconstruction but in fact I am growing into the idea of getting rid of the other breast. The worry of return is getting to me (complicated by other health issues which would make hormone treatment etc - if I ever needed them - impossible for me)

Any help or advice would be GREATLY appreciated.

With thanks,

L

Hi
I had a mastectomy for high grade DCIS and Pagets last year. I have seen the plastic surgeon and he spoke about having an uplift on my remaining breast,but I don’t feel like having anthing done apart from another skin saving mastectomy.

Like you I would feel safer without any breasts but am I hitting a mole hill with a sledgehammer?

Sorry I can’t help you just wanted you to know you are not alone with how you feel.

Hi, like you to I has mastectomy for high grade DCIS, I asked about having double mastectomy but my consultant would not consider it and said I only had a 2% more chance of cancer in other breast. I am not on any further medication and the cancer was not hormonal, not sure that means anything.

I will have mammogram every year and will see consultant every 6 months for check.

Feel fine at the moment but like you I do worry. I am 49.

Sorry I am no help either, but you are definitely not alone.

Hi,
Thanks so much forreplying.

Lindles, I don’t understand why your consultant said you had only 2% more chance of cancer in the other breast - did s/he say any more about that. I am only being checked out once a year. I wonder if I should be seeing my consultant more often? I don’t know if I am feeling more anxious as time goes on because it was exactly this time last year it all started and/or because I was misdiagnosed and I basically have lost trust that these people (or I) are going to discover any problems if they do arise in the other breast.

L x

Hi Flax

I am 40 and had a mast for invasive ductal with dcis Dec last year. I have discussed with both my plastic and general surgeon, and they are happy to support me in getting preventative mast with bil recon, hopefully the first quarter of next year, even tho the risk is only slightly increased of getting it in other breast. I just want to take that possibility away and get on with living my life. I understand it will be pretty major surgery I will be having, but I am young(ish), fit and healthy (apart from ca), and just want it dont in one go.

Hope this helps and if its truly what you want, I would hope that your team could support you in this!

S
xxx

Hi Flax, I’m a year on from bc diagnosis, IDC, and at the time I wanted a bilateral mastectomy but the surgeon said “I never take a healthy breast”, so I had a left-side mastectomy last December. I do want the other breast removed and think about it every day. I’m seeing the cons on the 11th Nov and want to discuss it with him. My cancer was grade 2 so not as aggressive as some, I’m 41. There is a higher risk of cancer returning in the other breast if your cancer is lobular, I do know that, but I don’t know the percentages. I am personally not going to have reconstruction. I’m having problems with my hormone therapy at the moment too! Tamoxifen wasn’t good for me and I’m limited with choices as pre-menopausal. I worry constantly about recurrence.

If it’s what we truly want, to have the other breast off then I think we should have that choice.

Liz x

I agree with you both.

I’d rather have the other one off than a reconstruction on one side. I might at a later date get reconstruction on both - what kind of reconstruction are you having Sparkler? I think implants would be a lot easier and look better if they were doing both sides, as the problem seems to be with matching with a normal breast.I wouldn’t want to have the more major diep as I just don’t want that kind of major surgery and I need to be fairly active for my kids.

I’m going to have to go and see my consultant and get some more information.

I find the ‘loaded gun’ feeling of not knowing if this thing is going to come back the hardest thing to deal with…though I still haven’t made up my mind if I can face surgery again.

Lx

I too am going to ask about mastectomy on other breast. I had lobular Grade 2 and am 56 so not sure if they will do for someone my age. But spoke to someone else at hospital - younger - and she was told they would.

Am not sure if I can go through all this again. And the risk of 10/20% in the other breast. Do they remove lymph glands at the same time? I feel I want to remove as many risks as possible for this disease. Does anyone else feel like that? I am also going to ask about removal of ovaries although I am post menopausal. Simply because I have had no children and read that again I have a higher risk of ovarian cancer. I always knew I had a high risk of bc and my hunch was correct on that one. I do not feel that overall they do enough for the general female population to offer options to reduce the risk of diseases. Yet a lot of the figures bear out the risks they do know about. They only treat things once you have it.

Hi Flax

Not sure what kind of recon I will be able to get at mo. When I originally saw ps he said I only had enough tummy for a small breast so he had planned on doing ld flap recon on both sides. There has now been a spanner put in the works as I had full node clearance after finding cancer in lymph nodes last month, and while getting this op, my breast surgeon discovered my vessels to be very damaged on the side where I had mast - prob a mix of the surgery and rads - so ld flap is not going to be an option on this side. I will be seeing ps again mid Nov so think I am going to pose a wee bit of a problem for him!! Expanders and implants he said is not an option due to the rads so dont know what he is gonna do. Really want to find out tho. Hope to get them both done in April.

Let me know how you get on

S
xxx

Hi Sparkler,
Poor you , you have been through the mill. I remember you writing this time last year. I think we went through our surgery at around the same time. I think maybe the option for you is to lose your figure and eat loads of junk over Xmas! I was told too that I didn’t have enough fat for my size C breast and that was only a week after diagnosis and I’m a lot thinner (the stress of it…) now. I guess these actors put on lots of weight for film roles and then lose it. That might be the way to go. I’m sticking with no reconstruction at present as I have young kids and can’t/don’t want to be away/off duty for any length of time. But I do miss my breast!
Sending love and good luck when you see the consultant.
L x

hi everbody just been reading the posts here and i have been thinking the same im 26 just had a masectomy with immediate reconstrution on r breast with ld flap inpants for high grade dcis had results friday to say just all dcis they are testing now to see if its estogen so got to wait to hear back to know if need to take medication im 1 week post op and doin ok but already worried bout the chance of it coming in the other breast my surgeon said ican have an uplift on the other breast but im thinking i really dont think emotionally i could go through this again the fear of it all and like metioned in anoher post the younger you are the more aggressive it can be if it comes back at all but what are the chances my head is all over the place emotioally and pyhsical shock i think 24 sept 08 i went to the doctors with a lump by the 30th oct i had had my ,masectomy i know i prob sound selfish as its just been said its dcis but i have been through the worst time of my life and never imagined it would be me at my age i just stuck in 2 minds what to do about the other breast any ideas or offrer of support i understand only i can make the decision but is lovely to read these post as you know your not alone thanks evebody and look forward to your response xxxxx

Poor you faith11 - what a horrible thing to go through at your age. I think the risk of return in the other breast was told to me as 20% which seems igh to me - but putting it in perspective, the general population has a 10% risk of getting BC, so we only have double the risk. I have no idea if these statistics are correct or not. That is just what I was told by my consultant.

I do feel very worried about getting a recurrence in the other breast as one might not be so ‘lucky’ next time. However, according to the patholgist that I talked to, even high-grade DCIS doesn’t necessarily turn into invasive cancer. Assuming they haven’t made a mistake in my diagnosis - I had DCIS for some years - due to misdiagnosis - and still didn’t have spread. According to who you listen to, DCIS only turns into invasive cancer 40 to 50% of the time.

Of course, one might get something more serious in the other breast - and that is the worry and the dilemma. I am inclined to get the other one off as I rather live without the worry. However, it is a difficult thing to go through potentially needless surgery even presuming that a surgeon will do it.

L x

thanks flax high for your reply it is hard and every where you look or speak to the satistics vary. i think i will chat with my surgeon again they are having a bored meeting tuesday to discuss weather i would benifet from that tablet tamoxfin not to sure if thats the correct name. not reallly sure what they found other then it was just dcis 6cm thats why had to have masectomy i guess i could ask for a copy of my results couldnt i
poor you being mis dianosed that must of been hard and like you say hoping it has not happened again im sure it cant happen twice but makes you think i guess even with what they have told me i keep thnking i hope they have not missd the tinyest Amount of cancer is that normal to think that way i just want to move on with my life and go back to being the mum i was to my 2 boys b4 all this happened may be having the other one removed is the answer ,surgery scares me again and is it in flicting un necessary pain or is it an answer for piece of mind
sorry to ramble on but it helps some times thanks xxxxxxx

it does feel a bit like living with a live hand grenade strapped to your chest…i’m two years post-mastectomy for DCIS with a small Ca and was called back after my routine review a few weeks ago…the panic was awful, it turned out just to be some calcs that they wanted a closer look at but i went completely crazy with fear. most of the time i feel OK but when something like that happens i realise it’s not only the physical scars that still hurt…

Hi, I am 43 with 3 young children. I was originally diagnosed with DCIS and IDC in 2005 and had a mastectomy then with no other treatment. I considered bilateral mast at the time but my docs didn’t thnk it was necessry. When I had implant surgery this past summer they found another tumor on my chest wall and my margins were positive so I just had a re-excision surgery and also had my implant removed. I had the implant in for 2 months and it was 2 months of pain, pain, pain. My plastic surgeon said my body was rejecting it and was producing inflammation. I was so glad to get it out. Interestingly enough, when I met with my surgeon she said because my cancer was multifocal I had to consider getting my other breast removed as my risk for the other side was now significantly higher. As a matter of fact she strongly recommended it. I was surprised because she has always been the type to just tell you your options and say you have to decide what’s right for you, but this time she was quite adamant. I know I have microcalcifications on my other breast and I already had a “scare” about it last winter. I don’t know if anyone else feels the same as me but my opinion is once you lose 1 breast the other one doesn’t seem like such a big deal. Since reconstruction is not in the cards for me anymore (not enough tissue for a flap and implants obviously don’t work for my body) I’m thinking with 2 prostheses I can make my girls any size I want. Hey, I gotta get something good out of all this!

Hi
don’t know if this forum is still active-I am considering bilateral mastectomy and reconstruction-had DCIS a couple of years ago and am only just beginning to realise the risk of a further new cancer (not a recurrence of the original dcis but a completely new problem) in either breast is not as low as I thought-there are a few published medical papers that suggest the risk of developing a new invasive (ie not dcis) cancer is highest in the first 10 years, eg at years 5 to 9 it is 4.4 times the normal population risk-the population risk varies depending on how old you are so the actual risk varies. Generally the risk is about 3 to 4 times the normal population risk; the lifetime (30 year risk) of deveoping an invasive breast cancer seems to be over 25 which looks high to me. This is not an easy decision-good luck all of you.

Hello flaxhigh

I was in a similar situation to you – at 44 I was found to have multifocal DCIS in my right breast, and like you I was misdiagnosed for years. I had a right mastectomy, and requested, and was given, a prophylactic mastectomy on my left breast also. My argument was that the tests on my right breast had all been negative – nothing showed on the mammo or ultrasound and if I hadn’t had the sticky discharge (which eventually led to the hospital performing the microductectomy that diagnosed me) I’d not have suspected there was anything wrong – so how was I to know that something similar wasn’t lurking in my left breast?

When the lab reports from the mastectomy came in, there was no DCIS in my left breast, but the cells showed hyperplasia. I know that some doctors believe hyperplasia is an early warning sign of going on to develop DCIS and later invasive cancer, so I was thoroughly relieved to have had the left mastectomy. I’ve never for a minute regretted it.

Hope this has helped you.

J

How confusing when different consultants give different advices when some support the idea of proph. mast for the healthy breast and the others don’t. What is the right thing to do? I asked my consultant before the surgery about prop. mastec. for the healthy breast as prevention, since there is a very slight possibility of micro calcification detected by the ultra sound, but both consultants (I have 2nd opinion) reckon that it would be excessive and there was absolutely no need for that. Now I do often wonder about the risk of recurrence, considering the path result after the mastectomy showed that I have a high grade DCIS comedo necrosis plus invasive ductal carcinoma.

My own PS told me that five doctors would probably give five different opinions.

Hi, just seen your concerns and would just like to reasure you. I am 32 years of age and was diagnosed with the brca1 gene 5 years ago, which means i had 80% chane of getting breast and ovarian cancer. After seeing my mum and aunty pass away at a very young age i decided to go ahead with a double mastectomy and reconstruction at the same time.
I had them done at the same time but unfortunately one breast wouldnt accept the reconstruction and ended up having the ld flap on it. I am now 4 1/2 months post op and can honestly say it was the best thing i have ever done. It has taken a massive weight off my shoulders and through out i honestly did not have any bad pain. After the surgery i had a build up of fluid in my back which i had drained off 3 times (this didnt hurt as my back was still numb) In the end decided to leave it and eventually just disappered by itself. I wish you well and just want to say be brave, im sure you will make the right desicion for your self. xxxx

Hi Ladies,
I was dx in May this year with Grade 2 IDC, after 3 attempts to get a clear margin it was then found I also had Lobular. I then had a mx. I could not have immediate recon as I was to eventually have rads after chemo. The reason for chemo was the amount of tumour they removed but fortunately no glands were affected. I too would like a second mx because I really don’t want to be going through this again in a couple of years. I wasn’t offered a double mx at the time because after an MRI scan was done my healthy breast showed clear. The worrying part is 11cms of tumour was found in total and I hadn’t felt any of it. I am 51 and was waiting for my first mam but even if I had had it they may not have seen the lobular as it had not been mentioned before.
I am to discuss this with my Onc and get the facts and figures and then the Consultant next year when my tratment is finished. I hope he will say yes.
Good luck, take care,
Jane