Can IBC be cured

Muffy777

I finished chemo and surgery, was told by my oncologist that as far as he was concerned, I'm cured but still need radiation and herpeptin which I'm starting next week. can this horrible disease really be cured or is this wishful thinking?

bluepearl

It can be "cured" in that most breast cancers can be....but there are never any guarantees of that for any of them. Not wishful thinking, just hopeful thinking and that goes for us all. Hang in there girlfriend!!! (((HUGS))))

Kicks

My Drs were all emphatic that IBC is never cured - at best it is NED (No Evixen e of Disease).

I was told by my Surgeon that the neoadjuvant A/C had done what was hoped for - got it form into a 'lump' with good margins so he was able to get it out and that then the adjuvant Taxol would hit any single cell that might have been 'hiding' to be then followed by rads as a final attack on anything that might still be there.

That was 7 yrs ago and still here login' life and still NED!

Muffy777

thank you so much , I'm terrified of this disease and hoping it stays away. I almost died during chemo , was hospitalized for 5 days due to very low potassium levels. I'm scared and have had no one except family to talk too, thank you for talking with me. Muah

Kicks

I had issues with very low K (potassium) during Taxol but was able to handle it with taking mega doses of it - never hospitalized for it. I still have to take quite a bit of K daily to keep my levels up to the normal range. Every now and then I cut back a bit on it, but within a week, my body let's me know I'm getting low on K so I up it back up and within an hour all is fine again.

We are each so unique!

Muffy777

thank you hun

Scwilly

I so understand how you feel. IBC is the big bad wolf of BC diagnosis. We sit at the back of the room - in a fearful place others are thankful they dont have to be. The way I got my head around it is to not feel its significantly different to a 'normal' BC diagnosis. It presents as highly invasive and not in a standard lump. I get by through thinking of the statistics being because it is hard to spot. Treatment was for me was dramatic and thorough. You may see in my dx's that I have recently been dx with mets in my liver, though now surprisingly ER+. So maybe this isnt that pesky IBC, I don't think so. I once read on a thread on this board that the person felt you shouldn't let worry consume you, because if you are ever dx stage IV then you wouldnt have wished you had spent more time worrying. I do know its really hard not to feel fear if thats what you feel. Right now I feel calm, who knows next week. Please put yourself first and if you feel you need to get some meds for anxiety and/or see professional who cd help. Just know we are all in your pocket.

Sarah

Traveltext

Well put Scwilly. BC is a mental challenge as well as a physical one, so we really do have to seek excellent treatment and believe in it, advocate for ourselves at all stages, do our best to stay healthy, and get on with life. Sounds trite, but it works for me.

Muffy777

thank you ladies, it's definitely hard to stay positive . I have good days and bad, sometimes it's so nice to hear I'm not alone 😆😘

sheshe48

IBC is a scary monster alright. Tomorrow I have to have 2 biopsies in my right breast. They are looking for IBC. I'm getting a punch biopsy and a stereo tactic biopsies. I also have calcifications. Sorry we all have been threw cancer. I'm hoping if my cancer is back that I'm in early stages. Have my first grandbabie coming in June.

mara51506

SheShe I understand how scary IBC is myself. My fingers are crossed that if cancer is back for you, it is early too. I feel the same way as Scwilly does. I don't fear the IBC or HER2+ beasts because any breast cancer is a beast. Doesn't matter to me stage, type or hormone/HER status. I wish no one, man, woman or child had to go through this. Best of luck with your biopsy. Keep us posted.

For myself, even though I had a met in my brain, I feel better than I have for a long time. I look at that stuff versus the what if. It helps cut through the fear I was feeling.

sheshe48

hello Mara51506, thanks for answering me. I'm a bundle of nerves right now. I agree, I also don't wish cancer on anyone. As soon as I get results back I will let u know. God speed and thank u for your advice .

JohnSmith

I'm not an IBC expert, but I saw this thread pop up and the subject line grabbed my attention. I just finished reading this piece called:
"Curing Metastatic Breast Cancer"
http://ascopubs.org/doi/pdf/10.1200/jop.2015.008953
Dr. George Sledge, a respected Stanford University Oncologist wrote this last year. I believe the publication was embargoed until Jan 2017, since I've been trying to access it for months!!! It's now public. Here's some insights worth noting.
1. Adjuvant therapy cures micrometastasis.
2. Adjuvant therapy after isolated local-regional recurrence improves survival.
3. Chemotherapy for overt metastatic disease produces long-term survivors.
4. Exceptional responders with novel agents.
5. Treatment of low-volume metastatic disease with surgery and radiation produces long-term survivors.

Here's the suggested ways to improve outcomes:
1. Earlier detection of metastatic breast cancer through better imaging.
2. Early detection of treatable genomic lesions with ctDNA (Liquid biopsies).
3. Generate numerous exceptional responders.
4. Target genetically smart cancers with Immunotherapy approaches. **

** I've been rationally exuberant about Immuno-Oncology and appreciate Dr. Sledge's Immunotherapy comments. Enough time has finally passed where some of these Phase 1 immunotherapy clinical trials have revealed durable responses from a minority of Stage 4 TNBC patients whose metastatic tumors have melted away with Checkpoint Inhibitors (Keytruda, Opdivo, Yervoy), a form of Immunotherapy. It's still very early days, but in time, Immunotherapies will become the future backbone of all successful cancer treatments.

---

Fwiw, in terms of IBC, I know one Triple Positive (ER+, PR+, HER2+) Inflammatory Breast Cancer (IBC) patient who is NED using Immunotherapy. She had a large Grade 3 tumor and became metastatic in Dec 2009. Several years ago, she enrolled in a Phase 1A Immunotherapy vaccine trial (targeting the mammaglobin-A protein) and achieved a durable remission. She's still NED. The Mammaglobin-A protein is commonly over-expressed in the majority of Luminal (ER+) breast cancers. The success of her small trial led to the launch of an ongoing Phase 1B trial, here: www.clinicaltrials.gov/ct2/show/NCT02204098]

Traveltext

Interesting article JohnSmith, thanks.

It should be noted, again, that IBC is not a metastatic diagnosis unless the cancer has spread beyond the breast, skin and/or the lymph nodes.

It is classified as Stage IIIB if the tumor:

• may be any size and has spread to the chest wall and/or skin of the breast and caused swelling or an ulcer AND
• may have spread to up to 9 axillary lymph nodes OR
• may have spread to lymph nodes near the breastbone

It is Stage IIIC if there is dermal invasion and:

• the cancer has spread to 10 or more axillary lymph nodes OR
• the cancer has spread to lymph nodes above or below the collarbone OR
• the cancer has spread to axillary lymph nodes or to lymph nodes near the breastbone.
  
  REF

sheshe48

hi John Smith

The book sounds interesting and has a lot of knowledge in it. I will keep an open mind. Thanks for your reply.

sheshe48

hi Travel text

Thank u for all the useful information. I'm trying to learn all I can on IBC. U gave me some things to think about. I had 2 biopsies yesterday. A punch and stereo tactic biopsies. I won't know results until next wed 1/18. My surgeon said it's either IBC or Paget disease or a bad cellulitis infection.

Traveltext

sheshe, plenty of us started with IBC, and it's not so scary if treated well. The IBC Lounge HERE is the place to hang out if you have it, but keep us posted with your results in any case.

Tinkerbells

if it helps ease your mind, I have a very dear friend who is 15 years out from a stage IV triple positive IBC (mets to a rib). Surgery, ACTH and rads got her to NED, where she remains all these years later. She has no idea how she responded so well but is grateful! So am I- her story inspires me. Wishing us all the best outcomes

sheshe48

thank u so much Travel text, I'm just a ball of nerves thank u for the invite. The thought of IBC sounds like a death sentence. I'm going to hang in there what ever the outcome.

sheshe48

hi Tinkerbells

That is an inspiring story, all I can think of is a death sentence. What ever the outcome I'm going to fight. I'm going to be a Grandma in June. Hav rd to be around for grandbabies. Thank u for easing my mind.

sheshe48

interesting Web site. Pinktobersucks.com. I look forward to reading more about it.

camryn11

I believe IBC can be cured. Keep moving forward. You'll do great. And I'm glad to hear more about your story.

MinusTwo

Just to recap all the posts above - breast cancer can NOT be cured.

You can get to NED (no evidence of disease).

Saw a good definition somewhere lately. "You will know you were cured when you get to 85 and die of something else." We need to stay always vigilant while we are going ahead with our lives.

Scwilly

Tinkerbell: thank you for an inspiring story. We are all hoping to be one of there, and this is what helps keep me from despair.

John Smith: Thank you for your info. Gives me food for thought, I will look up the link.

MinusTwo: So true regarding not knowing if you were cured until something else gets you!

When I was dx with mets last November I felt I had no hope to see any of my families milestones (I have a senior at High School and A Sophomore at College), let alone outlive my two sweet border collies (ages 2 3/4)!

I do feel that BC is just one of the dangers in life and I want to do all I can against this one danger I know I face. But I can't feel that it has to consume me. Since my DX I have been through all sorts of stages (feels like its a mourning - I suppose it is) but I am now at the stage of feeling I believe I will be here for a while, however long that while will be. I want to see my sons move through their adult life for as long as I can and whatever else life may bring in the meanwhile.

Love, success and happy wishes to all.

Sarah

austinlinda

Muffy, my response is different from the others. My doctor said that because IBC was so aggressive, that he had never seen anyone recur after five years, so unlike other types of breast cancer, if you make it five years you have probably made it. And in my case, he was right. I was diagnosed in 1994 when my daughter was 8 1/2 months old; I thought it was mastitis because I was nursing. Back then, there was no internet, few if any BC support groups or other resources, certainly nothing at all about IBC; no Estrogen, HER, or other sophisticated tests. It was pretty darn basic chemo and radiation and, in my case, high dose chemo with stem cell recovery, a treatment they no longer use for breast cancer but it may be what saved my life. It has been 23 1/2 years for me--I've been able to see my daughter grow to young adulthood, when I thought she wouldn't even be able to remember me. I was determined to survive, but I don't think determination made the difference, or attitude, or anything like that (though they give you hope and help you cope). I believe I was just very very lucky to beat this. At the worst, lowest time for me, I held on to hope--hoping beyond hope that I would survive. And I did. (But lest you think I'm home free, last year I was diagnosed with a second BC in the other breast, Stage II. But not IBC.)

I wish you the best in your journey.

Moderators

Hi austinlinda, and thank you for joining and sharing your story with all of us, it's very inspiring! We would love to hear more from you, so we hope you will stay connected here. If you have any questions for us please do get in touch.

Best wishes,

The Mods

jessozzie

Hello friends, i was diagnosed in August 2013 IBC,if you have made it 5 years with no recurrence, then you

can be almost be certain you have beat it...i am into my 5th year and my oncologist said i am fine now...

Best wishes to all IBC ladies...

Traveltext

Best that we don't assume we are cured of BC and especially IBC. Read this thread:

https://community.breastcancer.org/forum/88/topics...