Need help newly diagnosed IBC TNBC stage 3B 4.5cm tumor

EBBA12

My husband is AB- blood, asthmatic and overweight which is why we never went out much and also primary care giver to his mother.

Due to covid19 - appt delayed - misdiagnosed - until my mamo and ultra sound said IBC TNBC stage 3B - I do both every year dense breasts.

I listed my chemo @ 2 wks - (doxorubicin + Cyclophosphamide) then #7 Paclitaxel. In the beginning the MO saw some shrinkage - I did not see him for #6 - next #7 M12/21 changed due to snow + # 8 still 12/31

What if the mass doesn't shrink - could it be dead cell that resemble the mass - only identified with an ultra sound?

Limited shopping due to covid19 because sometime they do not have what I need. I read about fasting - but I was told to eat the same time everyday and that I could eat beef.

IS there a special diet I should follow - I drink soy milk with carnation instant breakfast with Chai seeds, followed by oatmeal w/soy and chai seeds snack pealed apple - lurch hummus on raisin bread toast, dinner meat (beef chick pork beans) Klondike ice cream bar - banana then ensure. I drink 8 12 oz H2O daily

I read a cancer tumor 3.7 reduced to only 3.2 after surgery without a clear PCR then radiation - I was initially told I have a 70% chance to make it - it could not be caught earlier than stage 3 - so I need some guidance because I read earlier stories so am I missing something?

Monday 12/21 I am going for genetic testing - are there questions I should ask?

Breast Surgeon M 1/4/21 - she is recommending only right mastectomy?

EBBA1

Gamb

Ebba I would suggest you read the Tnbc forums, from the beginning. That's what I did, great information in these sites. I believe your questions can be answered there and I would suggest moving to one of these TN forums for your questions and support.

EBBA12

there was so many - is there way to locate the more recent ones from 2019

MelissaDallas

Can I ask if by “IBC” you mean “Invasive (triple negative)Breast Cancer” (this is my read on your post) or do you truly mean “Inflammatory Breast Cancer,” which is much more rare? Big difference on where to refer you here.

Here’s a link for the most current posts on “Calling All Triple Negatives”:

https://community.breastcancer.org/forum/72/topics/752075?page=1185

If you need info on inflammatory breas cancer I’ll give you different link(s).

moth

Hi EBBA, sorry you are dealing with this disease but glad you've found us. It's a great resource for people at all stages of breast cancer.

yes, please clarify IBC versus IDC. It *sounds* like you have Invasive Ductal Carcinoma IDC.

Your treatment sounds appropriate and recommended. Not everyone gets a pCR from chemo. It really varies. You will not know for sure until after the surgery, when the pathologist examines the tissue and will be able to assess what is left.

There is a subforum on recipes & nutrition. You may want to start with the podcasts here which present latest research on diet, exercise and breast cancer outcomes https://community.breastcancer.org/forum/86/topics...

https://foodforbreastcancer.com/ is another source that you can consult.

lots of vegetables and fruit, whole grains, low fat seems to be the perennial evidence based advice.

This is a very large board with years of material so I know it can be daunting. Read through more recent archives - just going back a few pages. There are also monthly groups for surgery. Read through the Dec 2020 surgery group and when the January 21 group starts, join in. It's very helpful to go through this with a group of people in similar circumstances. The Dec group is here https://community.breastcancer.org/forum/91/topics...

Also consider entering your diagnosis and treatments into your profile, and then go to settings to make it all public. Then it will show in your signature which helps us all understand what your disease and treatment specifics are.

best wishes

Poppy_90

EBBA, I join the other ladies in welcoming you and letting you know how I’m so sorry that you’re here. There’s so much great information that you can get through previous posts and by asking. There’s a lot of really smart women on this board. I just wanted to say hello, and let you know that as a fellow TN I know how overwhelming it all is, especially at first. Don’t be afraid to reach out with questions.

LivinLife

EBBA - I just want to welcome you! The others have given you some great suggestions. I'm glad you are on this site. the information and support here are unparalleled when dealing with breast cancer. It sounds like your husband has challenges weighing on you too. I do hope you have support through family and friends in addition to this site.

EBBA12

I adjusted serving to public. I don’t have much of a support group but a few are trying, I will look at food I am not a good cook and have help shopping for food 1x a week.covud19 sometimes limits What is purchased.

MinusTwo

EBBA - yes i would recommend you read entire threads. There is SOOOOO much good information. So you start at 2019... I started reading threads from 2006. Or at least do what Moth suggested and read the last couple of years. There are no short cuts to this disease.

EBBA12

I have inflammatory breast cancer stage 3B which happens to be triple negative too

moth

Hi EBBA, oh Ok thanks for clarifying. IBC doesn't usually form a lump so you have an unusual presentation.

You might want to check out the IBC lounge. I'm linking to a page which starts in Oct 2019 so if you keep reading from that point you'll get just over a year's worth of posts. Good starting point as it will familiarize you with common issues and treatments. https://community.breastcancer.org/forum/81/topics...

MinusTwo

Thanks Moth.

EBBA12

question

around chemo #3 red devil my MO say my tumor getting soft

I saw him today before #7 infusion and my breast was warm and firm. I was concerned because Cancer is not dead yet. I told him to send a note to breast surgeon. Mo might ask her if she wants an MRI - is that a good thing?

So I have to see what happens after #7 and #8 takes hold. I was told 3 weeks after #8 for final results.

Can you go into surgery with inflammatory breast triple negative - with cancer still warm and come out with a clean PCR

I went for genetic counseling yesterday testing for 7 BRCA1 BRCA2 CDH1 PALB2 PTEN STK11 TP53. ATM CHEK2

Any help or guidance would be much appreciated.

EBBA1

blue22

Hi Ebba1,

I suggest you post in the IBC forum. As stated earlier, IBC is pretty rare. It also is treated a bit differently. There are a small number of us that will respond to your posts and questions.

Blue

santabarbarian

I did not have IBC, but did have TNBC. I am sorry for what you are dealing with! There is a pinned thread in TNBC forum w members stories and mine is on page 6 of that thread. I did some complimentary things-- such as high dose vitamin C, fasting, etc-- alongside the chemo/rads/etc.

You can still have a 'something' in the breast that turns out to be dead cancer upon surgery. I don't know about the warm related to IBC. I do know that high grade TNBC can be very responsive to chemo. I had a large lump at diagnosis and a 3 cm cancerous node.

You might ask MO about carboplatin as it tends to be effective against high grade TNBC. Xeloda too.

Sending you a hug and healing wishes.