A question for IBCers

alicki

My apologies for posting here but I have three important question.

1) By which method were you diagnosed? (punch, core, needle)


2) How many samples were taken?


3) If you were not diagnosed straight away, how frequently were you followed by the center that was treating you until diagnosis. 1 a month, 1 every two months?

Your answers could contribute to making diagnostics better where I live.
Cut a long story short, I have been given the opportunity to meet with the head of breast oncology (thanks to a connection) who will hear WHY I felt so insecure with their follow-up that I decided to get a breast reduction to get answers

I am going to take this opportunity to advocate for better diagnostic process for this terrible disease.
With your input, I will be able to make a stronger case.

I'm lucky, I don't have IBC, but I care because hearing 'oh, we might see it come up in a few months', is really an unacceptable answer and that kind of answer can do a lot of damage. Please help me try to change things.

Every experience matters.

Thank you from the bottom of my heart.
Alicki

Kicks

1.  Fine NeedleBiopsies

2.   3

3.   My biopsies were done about 3 pm Thurs.  I got a call from Dr D. The next morning (Fri) at 8 with the path. results - as expected IBC. 

I had had my annual mammo in late June and it was fine/same as last one.   One night in very late July I found an enlarged lymph node under arm (about the size of an almond).  My PA was on vacation so it took a week to see her.  I saw her at 11 Thurs.  She had me at the Radiology Clinic at 1 that afternoon for a new mammo, an US and biopsies followed immediately.  Had the path report at 8 the next morning.  Mon I saw Surgeon, Wed saw Rads Dr and Thurs saw Chemo Dr.  Lots of scans and tests and 17 days after DX started neoadjuvant A/C.   During the 17 days, it had rapidly progressed.  The node continued to enlarge, breast enlarged, nipple inverted and peau d'orange developed.  I never had any redness/rash or pain.,

alicki

thanks Kicks! I'm guessing they did FNA because there was no redness so no punch biopsy?

THANKS!

Kicks

There was no visible skin issues at all (no redness/rash or peau d'orange) at the time of FNBs.  The enlarged node was the only visible sign.  There was an area that was suspicious but questionable on the US so that area was also done along with the node.

alicki

Thanks Bon. How hard was it to get the medical staff to listen to you? If I remember correctly, it was not that straight forward?

Many thanks

Alicki

Meadow

1. punch 2. five 3. Breast Specialist said, "find a surgeon", while I was still in my gown from the biopsy. Less than 24 hours I had the biopsy results, and official diagnosis

alicki

hi meadow

Thanks that was really helpful!

Alicki

wrenn

alicki, do you have IBC? I don't see a diagnosis but it might have been mentioned someplace else

alicki

Dear Wren,

No i dont but i was investigated for it last year and the care was really bad. I have the opportunity to speak with the head of oncology through a friend and we will go over my case.

The aim is to take the opportunity to advocate for better care. I couldn't get a core biopsy and have to go to the extend of having a breast reduction to get answers.

A few months later, I have white spots turning up in my brain. Normally they are just that, white spots but because this particular hospital was never able to give me answers and told me I had mastits from unknown etiology I'm still ridden with anxiety.

All I would like to do is to advocate for better care for anyone in my area who goes to this hospital.

So no I don't have IBC, hoping to god nothing has been missed.

cider8

FYI, there are groups that teach people how to be patient advocates. You could find out more from a local cancer support community. You might also find guidance on IBC patient advocacy from Erase IBC or IBC Network (both have websites). It takes a special person with drive and passion to be a patient advocate