Hi, just joined today. Thanks for being here…
Massive denial/catastrophisation all rolled into one. Currently ultrasound biopsies intermediate with bits of high grade. Stereotactic biopsies on posterior area tomorrow. Guess questions are;
worried re. other breast - told M1 but itch and fear of something there too.
past mammogram done at dubious hospital - how can I check if there was something missed?
what is effectiveness of MRI in staging/avoiding unnecessary surgery.
if they find something in sentinel lymph node this might not be DCIS I guess?
how can i find out how good my surgeon is?
Thanks for any help. x
I would contact your bcn (have you been assigned one yet?) and ask them. I too have similar worries, think heightened by my mum passing of bc agreed 59.
Also I’m on a fb support group for dcis, which is predominantly American, and obviously things are done a little but differently there.
I’m sorry you’re feeling like this, although it’s totally normal and I’m sure we can all relate I totally agree with @tuttifrutti that your BCN is the best person to contact, if you’ve got details. Writing down your questions is definitely a good call, to refer to but also to get them out of your head! I’ve put some links (not sure if they’re active, might have to copy and paste into address bar ) below to websites that might be helpful. The Macmillan online chat facility has been of particular use to me
Thanks so much for the reply. Total mastectomy planned 9th sep. the BCN have been fab tbh. I keep being told I should “speak to someone” (this forum helps so much…) but I don’t want to. Hate crying in front of people, feel ashamed somehow at diagnosis, and am utterly raging with anger!!! Then feel more than a little indulgent as my pathology isn’t currently at the really serious end of the spectrum. Does any of that make sense…??! X
Please be reassured that how you are feeling is not being indulgent. It’s a normal and understandable reaction. A diagnosis of DCIS is life changing. The fact that you are having a mastectomy is proof that it’s not a minor ailment so do not feel you need to underplay its impact. X
Sorry for my slow reply @missbraveheart. I’ve been stuck on the runway! I am afraid I didn’t find a flight path. A plane would have been much quicker than the well trodden path I am taking which, so far has taken many many months as it’s so bloody long!
I am doing okay. It started last October with routine mammogram. Hardest part for me was the period of time when I was having investigations, waiting for the results and plan and telling my children.
Had 5 months of chemo and targeted therapy. It wasn’t kind but it was doable. Finished that mid May. Blessed with Covid a month later - ten days before my surgery which knocked me for six. Surgery was okay. Had double mastectomy, removal of sentinel nodes and reconstruction. Continuing on targeted treat till February, commenced Letrozole, having first Zolendronic acid infusion week after next and I’m waiting for a prescription for Advcal- D3. In summary, lots to keep me busy on the long haul flight!
Hey @mrsjelly. So lovely of you to reply and good to hear you. That’s a lot to pack in! My surgery is tomorrow. Weird mix of wanting to push on/wanting to run and hide. I always have a fair amount of “head chatter” but this is a step up. Having to snooze just to get energy to finish the day. Hope your treatments are going ok. Here for you.
I’ve also just read this, I’m coming up to 2 years from diagnosis and hopefully all is good. I will be thinking of you tomorrow and wishing you a straightforward surgery, easy healing and a smooth recovery. One tiny bit of advicefrom t9year old grandmother - put yourself first in everything. Don’t feel guilty at indulging yourself or at saying no if you don’t want to do something. Right now you are the all important factor in this hard and confusing time. Do what you want and what you know is right for you. Being on here is I know from experience the most supportive and friendliest place in town. Everybody is here for you. Sending lots of love, gentle hugs and good healing xxxx
Hi All. 4 days post op single m’ectony and sentinel node Bx. Lots really nasty nerve pain T4/5 ish axilla. Finding it v diff to internally rotate/adduct shoulder as it sets it off… trying cold packs. Any tips how to make this transient/heal quicker?
Thank you @dorri that’s really kind of you to be thinking of me. Bit of a glitch in that I ended up with a wound infection and had to go back to theatre to get that cleaned up and restitched. I’m in that period where I’m hoping that all sorts things (as plan b would be replacing the implant). It’s a bit frustrating that I’m not back at the gym etc as I can feel myself getting “squidgier” but I guess I need to practice some patience. Cos yes, my shoulder movement is almost 100% and the little nerve pains are pretty infrequent.
I attended a “Fear of cancer recurrence” webinar session by BCN this week which was excellent. I have also signed up for a “Moving on” course as I think I need to meet fellow cancer patients to get more of the words in my head out there - if that makes sense?!
How’s things with you?
Hi, I’m sorry to hear you had complications Really hope things settle down now and that you can get back to working out (gently!) soon. My fitness thing (and general hobby!) is skipping, and I really missed it after my surgery. It’s so frustrating, but you will get back into the gym, and will appreciate it so much more when you do I’m glad your shoulder mobility and nerve pains have improved
Good to hear the webinar session was helpful. Maybe I’ll check that one out next time it’s on And yes, I totally get wanting to release some mental baggage/worries etc in the presence of people who understand and have been through similar experiences I’m doing well thanks, it’s been 18 months since my surgery, and I don’t feel physically limited at all now
Wishing you all the best x
Hey @dorri.
Lovely to hear you. The webinar was by a oncophyschologist - who knew!! And the info that particularly blew me away was the graph showing cancer patient physical and mental wellbeing. Physically we all drop right down - cos stuff is happening to us. That plateaus. Then the mental drops as the physical picks up. I’d never really thought of that. Interesting it’s the opposite for our loved ones - many of whom I regret to say I don’t think of enough.
Wound infection seems to be behaving.
But implant seems to want to scoot which feels well weird.
How are you? X
@nannabee. I listened to your advice then really lent on it…
there’s been a bunch of stuff folk have suggested (for all the right reasons I’m sure) that I should do. But, thanks to you, I’ve said - politely - “no that’s not something I would like to do”.
Thank you and lots of love wherever you are with this.
@mrsjelly your reply was lovely and I very much appreciate all the information your shared as to next steps. I fear my response was too self centred and for which I apologise. Anyone who goes through this, let alone a double mastectomy is a warrior. I would love to hear how you are.
I totally agree with 
) below to websites that might be helpful. The Macmillan online chat facility has been of particular use to me 
Really hope things settle down now and that you can get back to working out (gently!) soon. My fitness thing (and general hobby!) is skipping, and I really missed it after my surgery. It’s so frustrating, but you will get back into the gym, and will appreciate it so much more when you do 