DCIS confirmed on Thursday…….help
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6 posts since
18 May 2018
Hello
im just starting on my journey one I never thought or hoped I would take. I have low to intermediate grade DCIS B5a in my left breast.
The breast cancer nurse told me on Thursday that there is no chance of a lumpectomy as the calcification is wide spread. I am due to see my consultant on Monday to discuss my care plan. at the moment I want a double mastectomy as I don’t want to go through this later with my right one. . Has any one got any advice or been in this same situation
thank you
Clare x
4358 posts since
18 Aug 2017
Hi Clare … sorry only quick reply but must go out shortly but wanted to answer you ..I’m a grade 3 her 2 neg lass … there’s lots of us on here .. l hope some pop by …
I could have had lumpectomy but like you said I didn’t want to come back again so l plummed for total .. l have no regrets and so glad l did … but I was 63 … and don’t really miss them …and I’m still here nearly 11 months and counting and doing good …
Any time you wanna chat I’m here most days … Chrissie x
6 posts since
18 May 2018
Hi Chrissie
thsnk you so much for taking the time to post.
Did you have a battle battle to get a double or were they ok with it.
Good ode to hear you’re doing ok x
1821 posts since
14 Aug 2017
Hi there.
There’s a lady on here called @Jolamine who had had a double mastectomy. I’ve tagged her so hopefully she’ll pop by altho she hasn’t been around much lately which is unusual. Guess the holiday season is upon us.
14 posts since
2 Jun 2018
Hi Clare ,
Sorry to hear your news . I am currently waiting for the results of my 6 biopsies . I get my results on 7/6. . My mammogram showed a large Microcalcification cluster and lots of Microcalcification specks over a large area and was diagnosed as 4c / 5 on the bi-rad table so 75-95% chance of it being positive .
I have been doing a lot of thinking about what I would do if I needed a mastectomy .
My mother in law had DCIS grade 3 and had a mastectomy 17 years ago in left breast and has had nothing in her right .
I would do what you are doing by getting advice from people who have been in that position and get all the facts and advice from your breast surgeon .
Good luck and I am thinking of you
Sara
4358 posts since
18 Aug 2017
Hi … l had total mastectomy on one side … was tempted to ask for both … if I’d known how little pain from op , I think I’d have pushed for it … and yes jolomines had a double … l will pass her a message but if it’s really what you want go for it … just do all the weighing up of FOR and AGAINST … look at pictures of double mastectomy… so you’ll be prepaired … I was so worried about looking at mine, but when I looked, l just thought, I can live with that …
Any other thoughts, don’t hesitate to ask … wer all different stages and different treatments … but it is doable … but it is like a rollercoaster ride .. you get strapped in , hold on tight, and know there will be ups and downs and you can’t jump off … but when you feel scared, look round, there we all are .. on the same ride as you … rilleyroo has already popped on, and there’s others here too… take care Chrissie x
150 posts since
24 Mar 2018
I was diagnosed with DCIS last November in my left breast. Mine was high grade and I had a wide local incision (lumpectomy) in January followed by 15 sessions of radiotherapy in February/March. I was told that often with low grade and intermediate they often do not follow up with radiotherapy as it’s slow growing.
I think the important thing to remember about DCIS is that it’s totally contained in the milk duct, it’s non invasive and not life threatening. There is a 99% survival rate after 10 years. I never lost sight of that. I never ever considered asking for a mastectomy and totally trusted my medical team in the treatment thay advised. My breast care nurse reassured me that because I’ve had it in one breast, it doesn’t necessarily mean it will occur in the other. If that happens then I’ll deal with it then. If you’re unlucky enough to get this awful disease then this is what you want to hear.
My treatment has been second to none and I will be forever grateful to those involved in my care. My surgeon said that after treatment I will be cured. They don’t say that easily with cancer.
I now have the reassurance of annual mammograms for 5 years and can get in touch at any time if I have any worries.
I consider myself very lucky and now cured.
I feel so well now that I have registered for Race for Life in July when I will be 2 weeks off 70!!!
I hope you reach your decision without too much anxiety and I wish you a happy and healthy future once your treatment is complete
5032 posts since
15 Jul 2010
Hi Clare,
I am currently bogged down with work commitments, which is why I’m not around as much as usual, but I hope that I will soon be back on the forum again.
I am so sorry to hear about your diagnosis. This must have come as a terrible shock to you.
I had a lump in my right breast initially and had a lumpectomy in 2010, followed by Tamoxifen for a year. I was told that I had mucinous or colloid cancer, which is a rare form of less aggressive cancer. I might add that my Mum also had cancer 20 years ago.
I was told that I also needed radiotherapy, but just a few months later I discovered a sizeable lump in my left breast. My surgeon was very dismissive of this without doing any of the usual checks. I took the view that there was no point in treating one breast wiilst ignoring the one with the lump in it. I eventually reached a stalemate with my surgeon and, after 11 months he referred me to the surgeon who was in charge of all the other cancer surgeons in the area.
When he saw the size of the lump in my other breast he did all the conventional tests. Fortunately the biopsy came back benign. A month later, I discovered another lump in my original breast, but I wasn’t so lucky this time. This one was malignant and turned out to be the same sort of cancer. My new surgeon suggested a mastectomy and was quite happy to do a double mastectomy to rule out any further lesions from developing in either breast.
I reckogn that I was lucky in that my surgeon agreed so readily to this. I have heard many tales on this site, where surgeons have refused to carry out prophylactic double mastectomies. I had my surgery and was agreeably relieved by how easy it all was. After I had it done I was much more comfortable than I was after my lumpectomy. I then took Letrozole for 6 years and just finished taking them last July. I was told that I no longer needed radiotherapy or chemo.
The only down side to all of this is that I have developed Lymphoedema in both arms and hands and now have to wear an eastic sleeve. I also have to go to a specialist Lymphoedema nurse every 12 weeks for manual lymphatic drainage. This is carried out for 2 weeks twice a week. At the end of these visits, I get bandaged up until I resemble a good copy of a mummy with both arms and hands hidden under a pile of white bandages. This can be restrictive when I want to help her.
I hope that you get this all sorted out soon and that you can decide upon the best form of treatment for you.
Please keep in touch anf let us know how you get on. We are always here for you.
Kind regards,
Jolamine xx
2 posts since
1 Apr 2020
I have been diagnosed with low grade DCIS .Im need a lumpectomy ,but because of Coronavirus the operation has been delayed for 3 months .I have been prescribed tamoxifen,need to go to the hospital,to collect .Not knowing the outcome is the most difficult part..
150 posts since
24 Mar 2018
Hi Sam.Yasmin………so sorry you find yourself on on here. Please see my post just above from the 2nd June last year.
As I understand it, with the low grade DCIS, very often the lumpectomy is all that is needed but your medical team will work out any treatment plan if you need it. Also it is very slow growing and often a wait and see approach is taken so the three months shouldn’t make much difference.
Please try not to worry. Easier said than done I know but this is a very treatable, non life threatening diagnosis. There is a 99% survival rate after 10 years.
Good luck with your treatment and please let us know how you get on…….Irene xx
5032 posts since
15 Jul 2010
Hi Sam.Y,
Welcome to our forum, although I’m sorry for the reason that you’ve joined us. As Irene has already said, low grade DCIS is very slow growing, and, all that is often needed is a lumpectomy. You are being given Tamoxifen in the meantime to control the growth. This is good news.
I know that it is extremely frustrating to have to wait so long for your surgery, but you have been fortunate enough to have your diagnosis and some form of treatment just before all scans for cancer patients have been put on hold.
Please keep in touch and let us know how you get on. We are always here for you.
Kind regards,
Jolamine xx
2 posts since
1 Apr 2020
Has anyone had watch and wait approach or extreme surveillance for stage 0 DCIS .Lumpectomy is quite extreme and it may not even develop into cancer ?
5032 posts since
15 Jul 2010
Hi Sam.y,
We are in unprecedented times.
Sadly, none of us have a crystal ball, so we cannot forecast whether or not your cancer will develop. I had grade 1 breast cancer 10 years ago. I had a lumpectomy, but I still had a second primary cancer in the same breast within a year. I was also taking Tamoxifen throughout that year.
As a result of my experience, I would have a lumpectomy just to be certain that you have removed all of the DCIS. However, this is a choice that only you can make. Whatever you decide, I hope that you make the right choice for you.
Kind regards,
Jolamine xx
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