So over last 3 months ive had multiple biopsies on both breasts and today ive been diagnosed with DCIS 35mm size in right breast, obviously im still in shock but just wondered if anyone could chat to me whose been through the same thing???
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Hi @claspe
I have DCIS and happy to try and answer any questions you may have through my own experience however everyone’s journey is different.
I wish you all the best x
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I haven’t been through treatment yet but I am about ten days ahead of you with the same diagnosis of DCIS. It’s in my right breast.
On the day I was given my diagnosis I was given an appointment with the surgeon and I attended last Friday.
At this meeting he offered me hormone treatment as a primary therapy, as an alternative to surgery. I wasn’t expecting to be presented with a choice. He told me my case had been discussed the day before at a MDT. Without meeting me, they had thought I might not be up to surgery. I am 73, have a pacemaker and stage 3 CKD. I tried not to be offended! You see I am a very youthful 73, look years younger, am active and fit with a good quality of life.
Anyway, I did my due diligence over the weekend and, by Monday just gone, having researched tamoxifen and all its possible side effects, I decided to opt for breast-conserving surgery.
Surgery is now booked for 19 November.
I have been told my DCIS has been caught early. It is 13mm.
I can’t help you with information about treatment but you and I are going through a similar experience at the same time. It helps to share.
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Thankyou for your reply, its a scarey time isn’t it, i 58 and fit and active, i work in a garden centre. My DCIS Is in my right breast and its 35mm so classed as large, did they test you for the BRACA gene or discuss chance or reoccurrence??
Do you mind me asking why you didnt go for the hormone therapy??
Hiya angharad,
I have loads of questions as I am still in shock to be honest, could you tell me a bit about your journey?
Of course although please bear in mind mine hasn’t been smooth sailing and isn’t I believe a typical experience for many!
I had an infection on holiday which went away with antibiotics but left a hardness and some other symptoms that I was referred to breast clinic for. After multiple mammograms, all of which were clear they did a biopsy which was inconclusive. At this point they thought I had something called a papilloma and so I had a total duct removal. The pathology from that found the DCIS. Mine was 45mm intermediate grade.
I had a lumpectomy and full nipple removal due to location of DCIS. Unfortunately this didn’t gain clear margins so I had to have a follow up lumpectomy and cavity shave. This found a second larger area of intermediate DCIS further back. This was followed by a round of radiotherapy and I was put on Tamoxifen.
Due to my age (I was 39 at start of this journey) and the fact my DCIS never showed up on a mammogram I was told I would have yearly MRIs. I am now just over a year down the line and have just had my first annual monitoring MRI. Unfortunately it discovered more DCIS in the same breast so am about to go in for a single mastectomy.
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Oh dear thats a really hard experience i cant imagine having to continually think about what they are gonna find next. If they say that mine could come back at all and its 35mm at min im gonna see if theyll do a mastectomy
Hello @claspe and others
So sorry you find yourselves on the forum. Not where any of us would want to be but a great place nonetheless.
Every one of us will have different circumstances but the issues are the same. My breast cancers were both invasive so different again. First time i wanted a mastectomy but was persuaded to lumpectomy. Tumour was lobular so much bigger at histology than thought so i had to go back for a mastectomy. I wanted double mastectomy but no. Move on 10 years and another primary in the remaining breast and again i was offered a lumpectomy. It’s the only time i think I’ve ever yelled at a consultant. I got the mastectomy!
Fair enough many women want surgery to be as conservative as possible but we are all different. I was just desperate for longevity, never mind the cosmetics. It staggers me that, as @dorsetdame said, a group of people could decide what’s best without even meeting us.
My message is. There’s is lots of information on the general Breast Cancer Now website and it is all accurate and up to date. The nurses will also talk through your circumstances with you on the helpline. Do all the research you can and decide what is best for YOU. Well done @dorsetdame for getting your curative rather than palliative option.
BTW my brushes with two nasty largish cancers, with nodes was 17 and 7years ago. I’m now 72, and have watched my grandchildren grow up. I feel fit and healthy and just took up running, doing regular 5K outings. There’s plenty life left after you all get through this, so hang in there.
So good luck to you all
Eily 
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Thank you Elly and bless you for everything youve had to edure and so lucky to have the time with your grandchildren ive got 3 little beauties and twins on the way so i feel very lucky, i just want these boobs off cause i dont want to live in fear of it coming back xx
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Hello Claspe. I’ve been through similar situation recently so I thought you might like to hear my story.
I am 63 years old and a routine mammogram showed microcalcifications 41mm diameter in my right breast. Two biopsies later, alongside much worrying and waiting, I was diagnosed with intermediate DCIS, estrogen receptor positive. I have dense breasts so MRI was recommended, which fortunately agreed with the mammogram findings. Due to having small breasts, the multidisciplinary team advised mastectomy, as WLE would not leave a good cosmetic result. I could have pushed for wide local excision + radiotherapy but I went along with MDT advice. Means that I don’t need to have radiotherapy and risk of recurrence on right side is lower.
I had nipple/skin sparing mastectomy and simultaneous implant reconstruction. I didn’t want to have an autologous reconstruction as it would have meant multiple surgeries and I just wanted to recover before my first grandchild was born. In any case, I am too slender to have autologous reconstruction.
My mastectomy was performed 5 weeks ago and I really sailed through the surgery and recovery. The granddaughter arrived two weeks later and has been a wonderful distraction.
I feel back to normal now and have resumed running but not upper body exercise. The bruising on my new breast has almost gone and I have a very pert right breast! It is numb and firmer than my home grown version which now looks rather droopy! However my surgeon said that I should let things settle for 6 months but then I can be considered for Mastopexy (a lift) to the left breast to give me a symmetrical bosom. But in a bra, no-one can notice a difference. My final histology showed 34mm intermediate DCIS with close, but clear margins. So I feel the decision for mastectomy was vindicated.
I will have follow up mammograms on the left breast for the next 5 years, then three yearly. I am opting to take Tamoxifen 5mg (low dose) for 3 years to reduce risk estrogen receptive primary in left breast. My risk of new primary on left is about 3% over next 10 years. Very low risk of recurrence on right side as no breast tissue left. Side effects on low dose tamoxifen should be mild but I won’t continue with it if they bother me.
I hope this helps you, but obviously your circumstances may be different. I may make it sound easy now but it was a horrible time. As everyone says, it is the waiting that is the worst! Wishing you all the best on the medical treadmill. Vienna
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Hiya Vienne,
Thankyou for your very informative reply and i am glad that things are working well for you, could i ask why you didnt have a double mastectomy to zero the risk of havinv to go through this awful thing again?
Hello Claspe
I am based in UK and had my care under National Health Service where double mastectomy is not usually offered unless you have BRCA gene. I have no family history of breast cancer so was not tested for BRCA.
Breast screening worked for me - thankfully. I feel confident that I will be followed up closely so don’t want to consider prophylactic mastectomy on the healthy side.
I am taking tamoxifen to reduce my chances of recurrence. I was on HRT for 6 years previously and with the benefit of hindsight wouldn’t have taken it/taken it for so long. I have reduced my alcohol intake to two glasses of wine a week and I don’t think I can optimise my weight/exercise/diet further.
I just feel very lucky to have got away with this relatively lightly. Fingers crossed for the future.
Best wishes to you during this difficult time. You probably know this but when you go to see your doctor, write down all your questions and take someone with you. Vienna
Thanks Vienna
Sorry to hear of another lady who has suffered this, i am hoping that they will listen to my request for mastectomy but i will have to wait and see what the surgeon says, the HRT does worry me as my menopause symptoms where horrendous, i would rather stay on HRT and not have the worry about my boobs tbh
No, they didn’t discuss anything with me. The surgeon did the same drawing for me as appears in the DCIS booklet. And then I was told I had a choice between surgery and hormone therapy. He was nudging me towards the latter but I knew nothing about it so I was shuffled off to another room to discuss tamoxifen with the breast care nurse.
She told me it would induce a second menopause, with all the usual symptoms - night sweats, hot flashes, low mood, vaginal dryness/itching, loss of sex drive and headaches.
Then she gave me the tamoxifen leaflet which I read cover-to-cover over the weekend. This was when I knew it was odd to be offered tamoxifen as the primary therapy. Nowhere did the booklet refer to tamoxifen as anything other than an adjuvant therapy.
Puzzled, I Googled it and found that primary hormone therapy is an experimental approach and research is only just being carried out. Was I a guinea pig?
Loads more searching and reading followed. Other possible side effects of tamoxifen include chronic tiredness that doesn’t go away when you stop taking it, loss of hair on the head but more downt growth on the face, nausea, vision changes, possibly polyps or ovarian cysts, or even endometrial cancer, and let’s not forget blood clots/DVTs potentially leading to pulmonary embolism.
I looked up NICE’s guidelines to discover that, in the UK, tamoxifen, as the primary therapy, is only ever to be offered to patients with ‘major comorbidities’ or ‘very limited life expectancy’. That was a bit of a blow! On paper I must look as if I’m at death’s door, simply because I’m 73, have a pacemaker and chronic kidney disease.
After everything I had read about tamoxifen, by Monday I had decided to opt for surgery and I’m reluctant to have either radiotherapy or tamoxifen as a belt-and-braces follow-up treatment.
I’m booked in for surgery on 19/11 and have various pre-op appointments before that, including a proper meeting with the surgeon on 10/11 where I hope all outstanding issues will be addressed.
Testing for the BRACA gene was not suggested but nor is there any history of breast or ovarian cancer in my family. And I believe they test those diagnosed at a younger age. Have you been tested?
And I’ll discuss recurrence at that meeting with the surgeon.
Hi @dorsetdame
Just thought this worth a mention, in case they suggest follow on treatment. I spent 5years on an aromatase inhibitor, and then switched to tamoxifen for 5 years, because I was worried about osteoporosis. I found the tamoxifen very easy to tolerate. I can’t recall any side effects at all from it.
Best of luck with everything.
Eily xx
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Thanks Eily,
I feel like ive made up my mind that i want a double mastectomy and to stay on HRT and not have the continuous worry of the left breast becoming cancerous as I have calcium deposits in all my ducts in each breast and i feel like it would just be a matter of time until the other one became cancerous
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Can’t say I blame you in the least @claspe I am perfectly happy with my double mastectomy and using prostheses.
Good luck with getting your argument across. If I had got the second mastectomy when I asked it would have saved me and the NHS 4 mri scans, 7 mammograms, 2 U/S scans, biopsy, 4 rounds of chemo, dozens of blood tests, I fractured humerus (I fainted after round 4 of chemo) a month of physiotherapy, a year of herceptin, 3 years of zolendronic acid…. You are welcome to wave that list at them if you like 
Love and hugs
Eily
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Thanks Eily. I’m happy you have had a positive experience with tamoxifen. I’ll make a decision when I have to. One decision at a time! xx
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Thankyou so much for such a supportive reply eily that means so much xx
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