Hi. New here, new to cancer

Hello. Sorry to hear about this but please be assured you are going to cope. The worst thing to recover from would probably be chemo and it sounds like you don’t need that. I’ve also heard that ductal carcinoma in situ is the best type to have. 

I would speak with your bcn about your side effects coming off the HRT as they are really good at managing these things. You will probably go on hormone blockers soon (usually before radiotherapy) so that should help massively. 

Thanks for the reassurance! One step at a time, right? Nobody has mentioned hormone blockers to me yet, but perhaps they will after the next surgery. Can I ask - bcn? Breast care nurses? They have asked me to talk with my GP and I have yet to get an appointment, so I'm really lacking information on options. Most sites discuss only the common symptoms.

Hi Scoo.  I would guess that the medication you mention needing for 5 years will be hormone  blockers, given that your cancer is estrogen +. I've just been given a prescription for those as my ductal cancer was hormone related. I had surgery 4 weeks ago by way of a lumpectomy on the ductal cancer+ 3 lymph noses removed- and on an encapsulated lump in my other boob. I am recovering well, but go back in 2 weeks for a further surgery to take out a bit more tissue.  (There were pre-cancerous cells very near the margin  of tissue which was taken out, so a wee bit more tissue is to removed-to be on the safe side). Not relishing further surgery, but better now than it coming back a year or two further down the line.

The hormone blockers worry me too, as whilst I breezed through my menopause 15 years ago, I am really anxious about side effects, altho realistically in the grand scheme of things - I should be appreciative/grateful/happy that my cancer can actually be treated.

I'm surprised at the BC nurses referring you back to your GP tho, as the ones where I am being  treated are brilliant and are so knowledgeable and understanding. Probably more so than a GP I wpuld have thought, as they deal with this everyday..

Hope all goes well for you xxx

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Thank you so much for your reply - it's definitely got me thinking.

I have just received the official letter from the hospital, and am busy looking up the terms. Yes, you're absolutely right - the five years of medication recommended is indeed hormone blockers, but as I am in no way through menopause yet, it's going to be tough. Before HRT, my joint pain was so bad that climbing stairs was difficult, and migraines (never had headaches in my life before) could cripple me for days. 

The original Grade 0 DCIS, all that the mammogram picked up, is dwarfed by the 'hidden' Grade 2 multifocal invasive cancer - the letter lists several types. Lucky I had the DCIS to spot! Interesting that Google tells me the profile strongly associated with this cancer type fits me exactly (I started periods early at 9, had children mid/late 30s, late and difficult menopause). 

I'm interested that you have something in your other breast, too. I asked about that, given that the invasive cancer wasn't visible through mammogram, and was told it's very rare and not to worry. I gather I will need MRIs in future, but perhaps I should enquire again about this sooner rather than later, in case something nasty is lurking there, too?

Didn't they do a mammogram and ultrasound on your other boob initially, as that's when they spotted my other encapsulated cells?.  I had felt the main cancer myself about a month or so before I went to my GP (grade 2), but the other one was a complete surprise at my first appointment ( where I had totally unprepared for mammograms, ultrasounds, biopsies).

I gather I will have a course of  radiotherapy, but am waiting for the results back from America to see if I will need chemo.  They thought that I probably wouldn't, and I am keeping my  fingers tightly crossed that I don't.

When I have read about other people's experiences with hormone blockers, it seems extremely variable-but quite a few say that they have fewer side effects in specific brands, and that side effects can reduce in time.  I guess it's a try it and see situation.    

I have to say that the care I have received has been amazing, everyone has been so reassuring, informative and kind. The BC nurses are always at the end if the phone if I need them.

Try not to Google too much-it can be very scary xxx

Hi, this is always the difficult bit, being at the beginning of treatment and not being entirely sure of what is in store. 

I was treated for a mix of DCIS and invasive (only confirmed after surgery) and my second surgery confirmed no cancer in lymph nodes.

Radiation was a doddle to be fair, five days on the run, and biggest inconvenience was driving to/from a different hospital to my normal one.

Hormone therapy side effects settled down after seven months, but discuss every side effect with your care team, as they will try to minimise effects and weigh up benefits for you.

Everybody's experience is different, but there will be a point when all this is behind you.

Make sure you get a Breast Cancer Predict Score (as part of your prognosis) at some point, as this can often be reassuring.

And then mammograms are every year for five years - this is referred to as 'remote surveillance' - just keeping an extra eye on you in case it comes back, but for most of us, this is very unlikely.

Take care.

Thanks, Louise42, that's reassuring. I have a pre-surgery call on Tuesday, and I'm building a list of questions. I have never heard or read of the Predict Score, so will add that to my list.

Unfortunately, my pleomorphic invasive cancer didn't show up on ultrasound or any of the many mammograms, even though just one of the 'multiple' foci (I don't know how many there are!) is over 25mm, and was found 'by chance' during the DCIS surgery, and I think that's what's scaring me most. Lucky this time, for sure. So I have been told I will need MRIs instead of mammograms, going forward. I hope they plan to check the other breast soon, too.

I utterly trust the teams I have met, they've been wonderful and reassuring at every step - but every time I see them, there's some new piece of unfortunate news we weren't expecting. I will be a wreck going into the pathology report after this next surgery! Fingers crossed tightly that the nodes will be clear.

I'm so pleased to hear your experience turned out well, in the end. Thank you for sharing. I needed a light through the fog!