Forum Discussion
desmoplastic IDC anyone??
i have just been diagnosed. one week now. all i know so far is invasive ductal carcinoma. its high grade on nottingham gradinf scale so that scares me. there is another word that scares ne more though. it has desmoplastic stroma. it musnt be that common as i cant find it on any of the usual breast cancer sites. all i can find are very scholarly articles that i couldnt comprehend. the two words i clearly understoid though were "poorer prognosis" has anyone out there had this or know ANYTHING about it. scared stiff. as a paraplegic i havent had a mammogram for 6 years since my accident. i was regular before that. could have been there years as i only found it by accident. although maybe the fact it is so aggressive could be good!!! it may be huge but may not have been there long at all, just grew fast. do that could be a good thing?
40 Replies
- yep, I was thinking too far ahead, you know the sort of thoughts you get, will I have chemo? will I get a reconstruction? etc,,,, its hard to focus on anything really, even a lame tv show lol, you've been such a support, so many of you have on this network
- Great stuff. One step at a time.
- traveling a bit smoother now it is sinking in, a little surreal at first, mastect is on 20th, so trying not to think past that :)
- hi and thanks to all, sorry about the impersonal thanks to all but there are so many supportive people here :) PaulaN, I am so glad to hear about you also, I felt a bit alien with the added prob of paraplegia as it really does, but shouldn't complicate things. about the hiring of a sling, I called our local walk on wheels which is a mobility shop and they do hire sling lifters. I was going to hire one for the day and they would have dropped it down there. I called PRP the next day and they said, we cant use one anyway as the camera is under the CT scanner and so the legs of the lifter will not go under it. I replied, that if an ambo is used they wont wait around. She said we will call them to come and pick you up. I replied that it could be quite a wait, maybe a couple of hours as they area always flat out, and in the meantime I am on your CT table while you have others waiting to use it. She replied, we will use a pat slide to move you across to a ''NORMAL TROLLEY". i jumped at that and said, "so ok, you can transfer me to a normal trolley with a pat slide from the CT? so why then cant you use a lifter to put me on the normal trolley in the first place and use the pat slide to transfer to the CT table?" I got no reply to that one.
My breast care nurse, Sue, has already tried, as has the surgeon, no luck.
Also Primek, you have been a great researcher for me, so tops to that too !! and mum2jj, thanks for connecting me with paula. You are all so awesome, Ive never been one to use forums, so when this one was recommended I was a little hesitant, so glad I decided to put myself out there! - Thanks @PaulaN , great for you two to be connected.
Paula xx - I agree with tbe above and I believe your breast care nurse should be finding a solution to this. My other thought is treatment at a larger public hospital perhaps. My surgery was done at TQEH in SA so the radiology was done in the hospital ...where they will have lifters. Get into that breast care nurse and she needs to solve this issue in consultation with the Drs. The other thought is the Orange Hospital Complaints Dept as it is an issue with their hospital. It is not your job to solve this it is there's. I tried to see if they had a Cancer Care Coordinator but none was listed. Rattle the bars and good on you for contacting the papers. (Also is there a local MP? ) Let's see what happens now. You will get appropriate care....even if we have to storm the darn hospital. And dammit...a team of fellow bc sisters will lift you if we have to but it shouldn't come to that. Kath x
- I just had a thought regarding the sling. Why can't they hire one at their expense??? There is always a way around things. Its not good enough that they aren't trying to find alternatives. When you have surgery they just pull the sheet (along with you) across. I hate the way we (paraplegics) are treated sometimes, like every time I have to have xrays ect its assumed that I can stand. Be assertive & demand that they find a way. Tell them that you'll go to you local MP, then watch them move.
- Hi Bevvzy as mum2jj said I am also a paraplegic. I trawled the internet for info on paraplegics with breast cancer, even the equivalents to this site & the cancer council & couldn't find anything. I was diagnosed last Jan & just muddled my way through. I noticed you mentioned you wanted to connect with someone your age (I think that was you lol) I'm 52 & in Adelaide. The other wonderful ladies here have said lots of things which I totally agree with so I won't go into that stuff. I am more than happy for you to contact me for support & if you want my phone number just PM me. Like I said I couldn't find any supports out there for paraplegics & the thing is it doesn't just stop at surgery. The differences for us change throught out the whole process.
Keep your chin up. Take lots of deep breaths. Lots of hugs XXX - Hi @bevvzy @PaulaN is another member on here who is paraplegic. Sorry Paula if I have the wrong name. I was just wondering if you two could connect and support each other. Maybe Paula can help with some of your queries.
I wish you all the best and I hope somehow you can get the dye thing sorted.
Paula (also my name ) xxx
