Recently Clinically Diagnosed with IBC
Options
labpsb
Member Posts: 40
We have been living with cancer for 7 weeks now; my wife was diagnosed with IBC 3b triple negative in early June (she is 48). The tumor grew FAST and there are lymph nodes positive under the arm.
It seems like we have been to Kaiser every day since, on 7/27 she has her 3rd Chemo (AC). Hair went after the first treatment, they want to finish this Chemo, reassess the cancer then probably do the Chemo with the T drug. And the mastectomy and radiation at the appropriate time.
Anyone wait so long for surgery? My wife decided on a double due to the aggressiveness of the cancer.
She has had every scan possible and they look good.
She had a port installed, but her lung collapsed, and now she also has a vent box on her chest.
She still has allot of pain in that lung area, even though the follow up x-rays look good. Anyone else have follow up pain from a collapsed lung, or maybe the pain is from the vent hole and or the port??
I had a friend who is a surgeon review the treatment with the Oncologist and they all agree we are getting the best and proper care.
But how do you know? And if another relative comes to me and says you MUST take Lynne to the Mayo, or to the City of Hope, or some other popular cancer center I think I am going to punch them in the mouth. As it stands now we drive 2 hours each way three to four times a week to Kaiser in Fontana plus the 14 hours in the ER the other day.
I did contact the City of Hope about their clinical trials, but they said we have to wait till she finishes Chemo/Surgery/Radiation (could be over a year). I also met with Kaiser and they said if The City of Hope has a treatment she needs they will cooperate.
We have only just begun my wife has the cancer and I am worn out, will we get into a routine?
Thanks,
Paul and Lynne
Also: I posted this as Clinically Diagnosed with IBC thats what all her doctors listed her as having, but its confusing the biopsy says Invasive Ductile Carcinoma I know she is also triple negative, and the breast is considerably swollen. I guess this is all IBC?
It seems like we have been to Kaiser every day since, on 7/27 she has her 3rd Chemo (AC). Hair went after the first treatment, they want to finish this Chemo, reassess the cancer then probably do the Chemo with the T drug. And the mastectomy and radiation at the appropriate time.
Anyone wait so long for surgery? My wife decided on a double due to the aggressiveness of the cancer.
She has had every scan possible and they look good.
She had a port installed, but her lung collapsed, and now she also has a vent box on her chest.
She still has allot of pain in that lung area, even though the follow up x-rays look good. Anyone else have follow up pain from a collapsed lung, or maybe the pain is from the vent hole and or the port??
I had a friend who is a surgeon review the treatment with the Oncologist and they all agree we are getting the best and proper care.
But how do you know? And if another relative comes to me and says you MUST take Lynne to the Mayo, or to the City of Hope, or some other popular cancer center I think I am going to punch them in the mouth. As it stands now we drive 2 hours each way three to four times a week to Kaiser in Fontana plus the 14 hours in the ER the other day.
I did contact the City of Hope about their clinical trials, but they said we have to wait till she finishes Chemo/Surgery/Radiation (could be over a year). I also met with Kaiser and they said if The City of Hope has a treatment she needs they will cooperate.
We have only just begun my wife has the cancer and I am worn out, will we get into a routine?
Thanks,
Paul and Lynne
Also: I posted this as Clinically Diagnosed with IBC thats what all her doctors listed her as having, but its confusing the biopsy says Invasive Ductile Carcinoma I know she is also triple negative, and the breast is considerably swollen. I guess this is all IBC?
Comments
-
Hi Paul,
I was diagnosed in August 05 w/ IBC. Originally my diagnosis was IDC stage IIIA. However I had a small pimple that has spread to a small rash, about the size of a dime. I told my onc that it was there prior to my surgery and they weren't concerned. After reading Dr Love's breast book I was concerned it WAS IBC. Sure enough after a skin punch biopsy, I was rediagnosed w/ IBC. Although my path report says IDC and no dermal invasion present. Pretty confusing!
I am with Kaiser also. I have overall felt happy w/ the care I receive. I am in Northern CA. My husband was actually born at the Kaiser in Fontana! I was surprised that my breast surgeon is Dr. Ernie Bodai and very proactive in breast cancer research. I know that some people will really poo-poo Kaiser, but they have taken care so far.
Please let Lynne know that this is a wonderful place to come for info and friendship. She is in my prayers. She will be okay.
Hugs and Prayers,
Lexi -
Hello Paul & Lynne.
I too was Dx with IBC 7 weeks ago and am also triple neg. I am in the UK so don't know what Kaiser is. I am having 4 AC cycles and then 4 T cycles. If this reduces the tumour which is 9x5cms I will then have surgery and following this radiation therapy. I have been researching on the net and find that this appears to be the most up to date treatment for IBC. As you know IBC is a rare breast cancer so please feel free to stay in contact as here in the UK it's quite hard to find many other IBC people.
We will travel this road together.
Regards, Helen -
Homsey:
I was diagnosed with IBC in 2001. I had six rounds of AC and Taxotere at the same time, had mastectomy, radiation and am now on Arimidex. It sounds like you are getting the most common treatment for IBC. It is very rare and very aggressive and there are not many of us out there so we do need to stick together! Keep a positive attitude and hang in there. Do you ever go to the chat room? I am usually there in the evenings...not sure what time that would make it for you. I live outside of Pensacola Florida so I am on central standard time. Hope all goes well and feel free to contact me anytime. Click on my name and my email address is on my profile. God bless you and take care! -
Thank you for the replies, Lynne had her 3rd chemo yesterday and she is not feeling well. I am working on transitioning the posting from me to her (which she did agree to).
It was very strange reading Helens post from the UK. Lynne and Helen were diagnosed with IBC at the same time, they are both triple neg, they both have the same size tumor, and they are setting down the exact same path for treatment. I could substitute Lynnes name in Helens post and it would be 100% accurate except for UK and USA.
Thanks again
Lynne & Paul
-
I had IDC, not IBC, but wanted to say that I was treated at Kaiser San Francisco. Several months after my treatment was over I went to hear Hope Rugo speak after the San Antonio breast cancer conference. Hope confirmed that the treatment I got at Kaiser was still considered 'state of the art' after new research had come in, so I ended up feeling good about them. Sending your wife and family hugs and hopes for a quick recovery.
Alicia -
Hello Lynne & Paul
Just thinking of you and hoping that your feeling a bit better today Lynne. Having my 3rd Chemo on Thursday and also getting my CT results. Very worried about the results but can't change them now and what will be will be.
Regards, Helen (UK)
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