DCIS High grade 11mm......new diagnosis

Hi

I strongly suspect that you won't actually be offered a mastectomy as they won't do treatment which isn't needed.  11mm is relatively small and although it's high grade, it's still stage 0, as it has not turned into an invasive cancer - and as you probably know that it may not have ever turned into cancer.

I had invasive cancer (grade 2 - moderate growth) and 2 areas totaling 54mm of DCIS (grade 3 - same as you high grade).  I was also Oestrogen positive for the cancer (oestrogen negative for the DCIS)

I'm nearly 4 years down the line and had lumpectomy (luckily big enough boobs to have 80mm chopped out).  The lumpectomy takes the wayward cells out, the radiotherapy kills anything that might cause issues for the future and the tablets are to prevent anything ever starting again - so there's 3 stages of protection there!

At only 11mm you probably won't have much of a scar either and it's a relatively straightforward operation.  

Best wishes, Lesley

Thank you very much for replying Lesley....I guess these questions will be answered on Tuesday when I have my second appt after diagnosis. I was just thinking of the daily worrying long term of it possibly recurring after a lumpectomy.

Thanks for highlighting your prognosis and how they tackled it Lesley and best wishes to you x

I had lumpectomy 7 years ago aged 49 for DCIS and A typical cells, 2 areas in right boob, followed by 15 rounds of radiotherapy. 

Last year I had mammogram and found I had invasive cancer estrogen positive in same boob. Had no choice other than masectomy.  I choose to not have reconstruction and feel I am coping well.  Hope all goes well for you whatever you decide to do.

Thank you so much for replying to me Booby J....So pleased you are now all fixed up.

Can I ask what grade you had for your initial DCIS and did you have the Tamoxifen. 

Best wishes to you x

Hi

Yes, the worry or recurrence is there, but I must admit after my second annual, I stopped worrying about it coming back. I go for my annual and then think "another year not to worry about it".  Booby J is very unlucky to have it come back and it's not the norm.  There are so many ladies that I met following my diagnosis who had 'had breast cancer years ago' - all these people I knew and had never even known that they'd had it.  I see your title says 11cm, but I think it is 11mm per your post, am I right? If it was 11cm, then I don't think there'd be much option but to carry out a mastectomy as it would be huge, but at 11mm, I'm pretty sure that any surgeon would deny you the choice of having a mastectomy, because they would deem it unnecessary.  

If you think about it,  (a) it's small  (if 11mm - not cm)- so caught in plenty of time (b) it is 'fired' by oestrogen - so the tablets will prevent that in future (c) radiation prevents any cells that might be developing from progressing.  I am now the same age as you and despite 69mm of invasive and DCIS, my surgeon wanted to do a lumpectomy over a mastectomy (with clear margins - they need to take out more - hence the 80mm removed), so, for the surgeons preservation of the breast is very important.

The operation for a lumpectomy is relatively straightforward - I went under at 4.30pm and back at home by 7.30pm.  Operated on, on Wednesday - back at work on Friday and driving again on the Monday.  A mastectomy is a much, much larger operation.

I made some life changes following my diagnosis, I exercise more now and I used to live on processed foods, so I cook far more in the way of vegetables now.  You'll get a booklet about living well with cancer, so it's worth having a look to see if there's anything that you want to change as this helped my 'dealing with the diagnosis' inasmuch that I felt I was also doing something over and above the surgical/tablet treatments to prevent recurrence.

Good luck on Turesday,

Best wishes, Lesley

Hello again Lesley, yes you are right 11mm. That is very reassuring that you begin to relax after a year or 2 and not worry about it so much recurring.

Can I ask how you get on with with the Tamoxifen Lesley as it depletes your body getting any oestrogen and so obviously menopausal symptoms will be there. I am into my menopause anyway and have most of the symptoms (was only the week before looking to get HRT before the diagnosis, can you believe that!). How is your mood, tiredness, sweats, I could go on but, you get the gist :0) would you say it is full on symptoms are just mild with some things. 

I too am making life changes and being vegetarian since I was 18 has probably limited my diet to an extent. I am now taking vitamins tailored for a 50+ woman with fish oil (hadn't touched fish since age 18 either) so you could say that is a massive change for me but, necessary. I was experiencing terrible muscle and bone pains with cramps in my lower legs and the day I started to take these I felt as good as new - who would have thought it! My diet has always been 'good' I would say with plenty of green foods and fruit but probably lacking in some areas and am now snacking on nuts, almond, pumpkin seeds. 

Having only had the diagnosis 2 days ago I still feel like it isn't happening to me and its happening to someone else, weird to explain but it doesn't feel personal yet!

Thanks for your honesty with this Lesley x 

Hi

I think your emotions are what we've all been through.  Mine was my first ever mammogram and I drove the 30+ miles to the call back breast centre without any thought about cancer - just thought they didn't know my breasts!  I can remember getting in the car (as they found a lump when pressing - the cancerous element, and then said "we have several areas of concern") saying to myself "Gosh, I have cancer" and then like you, thought it was just not happening to me - it just didn't feel real.

I've been vegetarian and not eaten fish since 15, but didn't really bother with vegetables prior to diagnosis - go figure!  pizza, pot noodles, chips etc.  although I did eat fruit.  I read that Almonds are good for reducing oestrogen, so I have a dozen almonds for breakfast now and usually add a few to my dinner plate too,  I've also stopped drinking cows milk as I figured they need oestrogen to produce the milk, so I didn't want to add oestrogen from them - who knows if I'm right, but I drink oat milk now.

I am on Anastrozole, rather than Tamoxifen as my Mum died unexpectedly when I was 48 and my Dad had had a major stroke 5 years previously, so Mum was his carer - I then became his legal guardian, so what with Mum's unexpected death (and dealing with the legal implications of the hospital's errors over her care which led to her death - this didn't fill me with confidence about having my operation in the same hospital!, but I will say they were excellent with me)  and looking after him, I think it kicked me into an early menopause - but I was 'all over the place' that I didn't even really notice it!  I had got hot a couple of times, but hadn't really put 2 and 2 together.  My Dad died the year prior to my diagnosis in 2017 (aged 51) and when they asked me if I could be pregnant (before the operation) I just laughed as I suddenly realised I'd been through the menopause a year or 2 earlier. Tamoxifen is if your pre/peri menopausal and then after that it's Anastrozole/Letrozole (not quite sure why there's a difference between those 2).  But they all do the same thing really.  However, as I'd not suffered with menopausal symptoms, I've not suffered with the tablets either.  

My friend has terrible menopausal symptoms so I do empathise, but can't give any advice.  They will give you tablets AdCal for your bones when they prescribe your ER reducing tablets - if they don't, ask for them. I had to.

Hopefully someone with menopausal symptoms can offer you some advice re dealing with it.  

Best wishes, Lesley

I had 6mm DCIS and an area of atypical ductal hyperplasia 7 years ago, followed by 15 sessions of radiotherapy.  Decided not to go on tablets as margins were good.

On letrozole now though after masectomy. Also take ad cal and Alendronic acid tablets for bones as apparently I have Osteopenia in my spine!!!

Wishing you well. Just telling my story as everyone is different. 

Booby J

Sorry LOW GRADE

Booby J

Hi Lesley

'Walnuts, pumpkin seeds, sunflower seeds, and almonds are great as a snack or topping. Plus, rich in polyunsaturated fatty acids, calcium, magnesium, potassium, and zinc, these tiny superfoods can help ease menopause symptoms and effects'....(this is copy n pasted)

Well done on getting more fresh foods into your diet, I'm sure this will help no end!

She only mentioned maybe Tamoxifen in her suggestion after the diagnosis, I was hanging off her every word and so this could obviously change after the op I guess.

So sorry to hear about your folks - a very dark time for you....

Thanks for the informative chats and I will see what Tuesday will brings! x