Hello - New Here!
Hello - New Here! Hello - my profile gives a brief explantion to what has happened to me but I am posting to see if there are other ladies, who at 37 or around my age, have had a mastectomy due to DCIS and have been offered immediate reconstruction but not taken it?
I also want to ask how other ladies feel about their DCIS and do they feel that they are treated differently by professionals. My breast care nurse has told me that I don’t have “proper breast cancer” and when I mentioned that I was planning not to have immediate reconstruction she said that “ladies with breast cancer don’t have that option” as if I should think myself lucky and take it. This has led to me finding it hard to come to terms with losing a breast and I keep thinking that women that are further down the line to me can often “get away” with a lumpectomy but of course they have “proper breast cancer” and therefore they aren’t as lucky as me. Sorry if that sounds so muddled but I am very confused at the moment.
I am oestrogen and progesterone receptive positive and was told by breast care nurse that I would be on Tamoxifen for 5 years but consultant says that this is not necessary. Friend I have made at hospital (same age) had a small invasive tumor for which she has had a partial mastectomy and chemo despite clear lymphs, is going onto Tamoxifen - what have other DCIS ladies been advised?
Thank you for taking the time to read my post and I look forward to hearing from someone soon.
Kind regards,
Gail
Hi Gail
I’m afraid your breast care nurse makes me really mad if this isn’t real cancer then why do we have to have such dreadful ops or are they doing it for the fun of it! DCIS is cancer it just hasn’t found its way out of the ducts. In my case my DCIS had started the process of turning itself into invasive cancer, micro invasion, so I would have been in dire trouble if they hadn’t have removed my breast when they did as the whole breast was involved.
I had an immediate skin saving reconstruction, a DIEP, and I’m very glad I did, I knew that I would be terrible to live with without it. The breast shape is so realistic but I know that not everyone can face a bigger op simply to keep a breast shape.
I have not been put on Tamoxifen and when I asked about this I was told that a decision had been made in the hospital not to give it to DCIS patients because the risks of bad side effects are greater than the risk of breast cancer reocurrence in a DCIS patient who has had a mastectomy.
Ignore what your breast care nurse has said cancer is cancer whether it has found its way to spread or not you canot have’proper’ cancer otherwise have I had an ‘improper’ cancer! It may not pose the same dangers but our lives are still changed by this and she should give you ‘proper support’.
Take care and I hope all goes well for you.
Love
Beverley
Hi Gail Hi I am also 37…my problems all started in nov 2005 after injectable contraception too (depoprovera) was misdiagnosed for 18 months (see profile).
Have DCIS and am having mastectomy and immediate reconstruction (Diep) as Beverley above did, next thursday.
I decided to have it done immediately because it was an option and also because i couldnt imagine not having 2 breasts…the diep uses skin and fat from your tummy and therefore is a more natural result, shouldnt need to operate on good side to produce a symmetrical look. Immediate recon is however a lengthy procedure and i am quite scared…just thinking of my tummy tuck…and not what i am going to feel like afterwards.
At present i am not due to have any follow up treatment post op…unless there is an invasive nasty hiding in there…my lymph node biopsy was clear too.
I too felt very odd with DCIS and for a while felt uncertain as to wether i had breast cancer or not…my breast nurse has been lovely and assured me it was…not that i wanted it but felt like i didnt know what i had…im so sorry you are not getting the support you deserve…
you could also post on bcpals website the girls there are very supportive and helpful too…
I wish you lots of luck and ask for a different breast nurse if you dont feel supported…
Love Anna x
Hi Beverley,
I have obviously come to the right place for support - thanks for the quick reply.
My reason about not having reconstruction is that the plastic surgeon registrar advised that the DIEP best for me but because I have a fairly flat tummy, there may not be enough to make a “B” cup so I may need surgery on the other one to make it smaller and therefore equal me up! I’m not sure that I want surgery to a healthy breast. I am seeing the consultant on Tuesday, so I may change my mind. I know we are all different, but how long was your recovery?
To expand on the Tamoxifen question, I was given a similar explanation to you - that it is not seen as effective to women with DCIS and that in the USA they only give it to women with high grade DCIS. What concerns me is that I would like to take every precaution that I can to stop DCIS / invasive cancer developing in the other breast and I just can’t understand why an invasive cancer is seen as so different. Even if the woman with an invasive cancer has had a mastectomy she seems to get Tamoxifen - after all they are / were both oestrogen receptive positive.
I am a little concerned that my DCIS may have already become invasive as I found a small lump last Friday. My husband thinks it is scar tissue but I feel it is a little too far away from the scar to be that. I pointed it out to the registrar of the consultant that I saw for a second opinion this week (fantastic lady and man) and they didn’t seem overly worried but said I should speak to my consultant who I am due to see next Friday (11th).
Thanks for your support over the “proper” situation - feel I belong somewhere now!
Gail
xx
Hi Anna,
As I have just said to Beverley - thanks for your quick reply - feel I belong somewhere now.
I was on the same injectable contraceptive as you and I do wonder if I caused this / speeded up the process?
Have you been advised what your follow up would be if anything nasty was found? I understand that radiotherapy can damage the skin so the general opinion is not to give it to a newly reconstructed area.
Have you seen any photos of DIEP reconstrictions on women our age? If so, where?
We are going away for the weekend so I’ll be back on the board next Tuesday - thanks to both you and Beverley for making me feel welcome.
I wish you all the best of luck for your op next Thursday - mine will be on a Thursday as well: obviously a good day for them??!!
Gail
xx
Hi Gail
At the hospital I went to they can also take fat from your bottom if there is not enough on your tummy. It was touch and go with me if I had enough fat on my tummy and he considered if he should use my bottom but I put on 1/2 stone for the op (it always goes on my tummy) so I had enough and my tummy is now as flat as a board.
I took 3 months off work - physically at 6 weeks I was driving and started yoga although I couldn’t run around all day as I normally would but I needed the time to sort myself out mentally and I think I would have needed that if I’d had just a mastectomy.
My DCIS was high grade and covered my entire breast with a small area of micro invasion and they still haven’t offered Tamoxifen to me. I worry that I may get it again and I’m only offered 2 yearly mammograms on the other breast - I may go once a year privately so that I don’t worry.
At the back of my breast, by the time of dx, I had a massive plate of hardness that would push up and was visable when I had a bra on so don’t look at your lump as possibly being invasive because mine was still DCIS and that was with the drs certain I had invasive when I first went to see them.
I hope all goes well for you on the 11th. I am going away today till next weekend but will look to see how you are doing when I get back.
Love
Beverley
Hi gail
Interesting that we were on the same contraceptive injection…i had previously been on it for 5 years before i had children with no probs!!!
As Beverley says i think it needs to be quite a degree of invasion before further treatment is required or of an advanced stage…i still dont understand all the grading.
With these analogous (think thats how you spell it) recons using tissue from your own boby as far as i have read once its healed radiotherapy is possible as its your own tissue not an implant…
Breastcancercare book on reconstruction has a fab photo of a bilateral diep…id be very pleased if mine looked like that one…not sure if its viewable on line.
Good luck…will let you know how i get on too.
Anna xx
Breast Cancer Care ‘Reconstruction’ booklet Here is the link to our publication about breast reconstruction as referred to by Anna. You can read it via the following link or you are welcome to order a copy from our helpline on 0808 800 6000 which is open Monday to Friday 9am-5pm and Saturday 9am-2pm
breastcancercare.org.uk/docs/breast_reconstruction
_dec06_web_0.pdf
Kind regards
Forum Host
Breast Cancer Care
Sorry…taken me a while to get back… …went away over bank holiday, new computer so no internet for a few days, hospital appointments, busy weekend preparing and attending an event as part of my small business, getting the house stright and helping friends with child care and two weeks has passed.
Thanks to both Beverley and Anna - having seen plastic surgeon, I have decided to have the immediate reconstruction. Anna, you have inspired me by posting so soon after your op!
I saw my oncologist last Friday and enquired about contraception to be told that I can go back on Depo as there is no proof that this causes or adds to the chance of developing breast cancer. I liked taking it but feel really unsure about putting more oestrogeon in my body when I am already oestrogeon receptive positive. It bothers me that this seems OK to do when if I had had invasive cancer, I may be taking drugs that could stop me producing oestrogeon. From what I understood, the cells are the same but ours are confined to within the ducts.
This is just a quick post as I need to take my little boy to the doctors now.
Gail
xx
Hi Gail
So glad you have been able to come to a decision about the reconstruction. I, too, find it strange that you have been advised that it’s ok to continue with your contraceptive. I no longer have that problem having just started the menopause but I talked to my GP about the fact that I was eating a high soya diet, which mimics oestrogen, and was advised by him to give it up. I don’t think anyone knows for sure and I think that each dr has his/her own views.
I saw Anna in hospital on Tuesday and she was looking extremely fit and well and seems to have sailed throught the op. I had a tidy up op yesterday, an adjustment to my nipple and a removal of a flap which was sticking out so next it’s the tatooing and I hope that apart from regular checks I don’t have to go there anymore.
Hope your little boy is ok.
Love
Beverley
Hi Beverley,
Little boy fine - conjuctivitus but I wasn’t certain as his eye was not sticky but swollen and very red and bloodshot.
I put a note in a different post to Anna to say that when GP saw my little one, she asked after me and I told her that I had an appointment with the nurse for my next jab and she has put a stop to it and said that I can’t have it! She wants to give me a non hormonal coil but I don’t like the idea so that side of things will be down to my husband!!!
Gail
xx
Hi Gail
Gald your little boy is ok…children are such a worry arnt they…
Hope you are having a good weekend…ive just had a sleep after lunch with the bambinos…my little girl didnt want me to leave…still she is back here for cuddles tomorrow…and im venturing to local town with mum and dad to get her feet measured…my first big trip out!!!
Pain almost non existent now…not bad for day 10…not taking any painkillers at all now.
Hope you have had a good weekend.
Love Anna x