A question for IBCers
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
Comments
-
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.,
-
thanks Kicks! I'm guessing they did FNA because there was no redness so no punch biopsy?
THANKS!
-
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.
-
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
-
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
-
hi meadow
Thanks that was really helpful!
Alicki
-
alicki, do you have IBC? I don't see a diagnosis but it might have been mentioned someplace else
-
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.
-
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
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team