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?

Basically this is just a response of the body to try and contain the abnormal cancer cells but not being as successful as we would like. It apparently occurs around non cancerous growths as well. My cancer had a high prolifetation rate also, so was a grade 3. I guess the good thing about this is that it response well to chemo. I'm 14 months on now.Don't get caught in the cycle of over reading in google. Basically I think they say poor prognosis with all breast cancers. Know the stats. 90% of women in Australia with breast cancer will survive at least 5 years. The best we can do is try to believe we are 1 of those 90%. And yes ...most live much longer than that...I'm planning on at least another 20.The pic is from the slideshow information provided at the BCNA Summit held 15-17 March. We are lucky to live in a country with such fantastic outcomes.Ask your surgeon or breast care nurse to explain the patholgy to you in more detail.Take Care. Kath x

thanks so much !! i feel like i have fallen into some black canyon, my emotions change by the second, happy, furious over nothing, crying, totally denying the report, its hard to keep up with the minute by minute mood swings, think i nead a psychiatrist lol keep well, i see surgeon tomorrow morning at 10 :#

Yes, totally normal to feel that way. My IDC was also abnormal as it had growth consistent with a lobular carcinoma but the staining apparently showed it was still a ductal carcinoma. Having an abnormal cancer just ramps up the stress about it I can assure you, however, my Oncologist wasn't concerned about it.You are eligible for a mental health plan, see your GP to arrange this, they can organise you to see a psychologist and work through the stress if you feel you need it. It should be covered by Medicare. My sister says you will go through the 5 (or was it 7) stages of grief when you are diagnosed with a serious illness, and I certainly am. My most common stage is anger and I revisit it often.I go back and forward through the stages, and still sometimes think it is all a bad dream.if you go onto the resources section of the BCNA website, there is a fact sheet about Dr Google, it lists the reliable websites for you to access.it also has many other fact sheets you can order in hard copy or download yourself.I thought I knew a lot but found many there that were very helpful, including the one on the mental health plan.we are here for you to ask questions too, and to just listen if you need to let rip about something, ask your Surgeon a lot, they should give you lots of information too, mine gave me the My Journey information book, and they had a brochure for contacting the breast care nurse, who is a fund of information.hoping you can find a way through the jumble of thoughts and can get your treatment plan in action soon, it really helps.

: ) I am so glad I got the my journey kit and found this site. I think my biggest issue at the moment is that these stages of grief which I have recognized, are not happening in any order and they go between each otehr minute by minute, you know its like all 4 seasons in one day. I dont know if you got the my journey journal or not but it has you circle, on a scale of 1 to 5, how you felt that day, I usually circle three of more of them lol now im smiling and happy but 15 minutes ago I was swearing and upset. I think I get angry as I really do blame the nursing home I am in. I am a paraplegic and I came in here 4 years ago, before that I had 2nd yearly mammograms. I was due for one when I came in here and got a reminder. It never happened though and I get a bit angry cause I think that if I had kept having those mammograms, yes, I would still have got it, but would it be grade 3? and IDC? I doubt it, it would probably have been detected very quickly and been insitu still. I know there is no point being angry now, but it doesn't seem to take anything to make me angry. I am always such a passive person, a doormat my daughter used to say :) shes probably proud of my anger lol

Use that anger, Bevvzy, I did, and yes, I went up and down at a frantic rate to start, it has settled more now, but I can still go through all the stages.A week after diagnosis is still raw, no wonder you are having all these feelings.I did my research and became a lot more proactive in my care and treatment. No more relying on the experts. I never used to question things, now I do it all the time.A grade 3 is the rate at which it grows, that probably wouldn't have changed, it is the stage that is the issue, which is how big it is and if the lymph nodes are involved.You probably won't know what stage it is for certain until the pathology after surgery.I hope you get a lot of help and support from your team through all this, it really helps having so many people trying to get you well again.

desmoplastic IDC anyone?? | BCNA Online Network

40 Replies

bevvzy
Member
9 years ago
:)
bevvzy
Member
9 years ago
I have spoken to Sue, the breast care nurse and she is lovely. She did contact the radiologist and was pretty much told the same thing
bevvzy
Member
9 years ago
hi unicornkisses, I am in a nursing home and staff are not allowed to manually lift at all. I dont know anyone really in orange, as before entering the nursing home at the ripe old age of 51, I did not live in Orange. They said they can lower the bed to the wheelchair and I can transfer myself that way! I cannot self transfer at all, I have nothing from the waist down and do not have the upper body strength to do so. Plus the arms of my power wheelchair do not lift off. We tried community transport and they said they "are only funded for members of the community" so clearly, I am not a member of the Orange community as I am in a nursing home. Despite the fact I ride into town on my chair on a fairly regular basis and contribute to the economy of the town lol. I have gone to the local paper
bevvzy
Member
9 years ago
thank you so much!!! I didnt even think of asking her!! I guess my thinking is not as up to scratch as it usually is. Thanks so much for the effort you clearly put into replying to my post :)
primek
Member
9 years ago
@Cosette_BCNA any other suggestions.
primek
Member
9 years ago
Contact the McGrath breast care nurse and get help. Details for the Orange one below. (I've copied and pasted )

HI! I'M SUE KUTER.
I'M BASED IN Orange.in
I support patients and their families in the Orange and Cabonne regions.

I've been a McGrath Breast Care Nurse since 2011, a registered nurse since 1982 and I also have a Graduate Diploma in Breast Cancer Nursing.

The most important thing I do for my patients is ensure they are fully informed so they can be empowered to make decisions about their health and treatment.

Every day I make a difference by following my patients through all aspects of their treatment through breast cancer. Exercise is an important part of the treatment plan for women with breast cancer these days. I have put together a calendar of weekly exercise classes for women who have had a diagnosis of breast cancer to attend and I also attend these classes. The classes provide support, companionship, exercise and an opportunity to build on their confidence.

Official McGrath
Breast Care Nurse
Email:
[email protected]
Address:
Forest Road
Orange NSW 2800
Work Number:
02 6369 3968
Unicornkisses
Member
9 years ago
Are you able to take a carer or two to move you? Surely this is not an isolated type of situation. The benches are hydrolic and can be moved up and down, you can almost be slid onto it. I think I would be pushing more with my community services to get help.
I am sorry I can't be more helpful, but I understand your frustration and desperation.
bevvzy
Member
9 years ago
sorry to all im being a negative, just a really bad day. I was starting to settle as I had a plan to start, now there seems nothing
bevvzy
Member
9 years ago
I am so upset. PRP are a FOR PROFIT clinic and yet they cant afford a lousy $3000 for a sling lifter. The lifter would be used for loads of people for all sorts of tests, xrays, CTs, ultrasounds etc, so all these people are turned away. Relatively speaking, given the profits they would haul in, and the fact that they would have more patients as their services would extend to people with quadriplegia, paraplegia etc,,, they would make that money back in a month. Yet I, jsut a lousy little individual, has jsut started a gofundme campaign to raise money for THEM to buy a lifter, which clearly will not be in time for my operation anyway but will at least help others in the community. I am seething as my only option was surgery and now it cannot be done. Where does it leave me I wonder??? I am so uptight I am seriously thinking of going to the local paper
bevvzy
Member
9 years ago
its no use. I called and they said they do not have a sling lifter for people who cannot transfer themselves and that by law they are not allowed to assist - workers comp etc..... no test no mastectomy, thats it. They told me to call orange hospital medical imaging and they got me to fax the request so they could see exactly what the tests were. The hospital called me back and said that they cannot do it there, only at PRP. I was also told without the test I cannot have the mastectomy,so where does that leave me????

Forum Discussion

desmoplastic IDC anyone??

40 Replies

Contact the McGrath breast care nurse and get help. Details for the Orange one below. (I've copied and pasted )

HI! I'M SUE KUTER.

I'M BASED IN Orange.in

Recent Discussions

How soon after mastectomy can unusual scar be "tidied"

Predict - Breast Cancer app

What to expect - AC after Carbo/paclitaxel/pembro

Monash Health or Peter Mac

Microcalcification biopsy