Inflammatory Breast Cancer

Dear S.,

I am so sorry, it is a very tough diagnosis. Unfortunately, I was just researching this yesterday regarding a friend. Here is the info online:
http://www.cancer.gov/cancertopics/factsheet/Sites-Types/IBC

Stay strong. C.

Ugh, I feel for you guys!!! My dad was diagnosed with Stage II Lung Cancer in September of this year. I am not very fam w/ breast cancer per se, but I do have "somewhat" of a medical background and very unwanted experience with lung cancer given my dad's history. Here are few things I do know:
* the worry and unknown that cancer is brings is the most brutal part!!!
* no 2 types/situations are the same
* they can throw a pathology out there and when they get in during surgery it's not as bad as they thought (happened with my dad, mentioned stage 4 and after surgery was actually on btw stage 1-2)
* cancer treatment has advanced so much that people beat the hell out of cancer everyday!

Hang in there, I know it's so worrisome!! Drop you to your knees in tears worrisome, I've been there! Prayers for you and your aunt for peace, faith, hope & healing!

Hi S., I will be honest. When I read the words Inflammatory Breast Cancer I got chills. I find it interesting I have not logged into this site for weeks and that's the first thing I saw; those words.
My mom had inflammatory breast cancer. She lived about a year after her diagnosis. She was stage 3 at the time. Diagnosed late as her GP believed her symptoms were not anything to be concerned about. We did see an Oncologist and as soon as she did the exam I could see it in her eyes...she hugged my mom & said good luck and I will do everything I can. My mom had lymph nodes removed under one arm but their was a bump between breast and and chest so a total breast removal was not possible-unfortunately. I still wish it had been As mom had agreed to it.
I truly hope the removal of the breasts will make all the difference for your aunt. My mom did go through 2 rounds of chemotherapy and as much radiation as allowed by regulations. She handled it all as well as can be expected. Her nausea and hair loss hit at about the 4th treatment. She was just getting back to life when the cancer metastasized on her sciatic nerve. More painful for her than anything. Swept her off her feet literally and she was in the hospital for a month-eventually having more radiation. That left her unable to walk. She was in a care home for almost 2 months. We took her home largely because although the care-home was doing a good job, her spirits were going down the tubes fast;she just wanted to go home. We found a wonderful physical therapist who had my mom walking after 3 visits! That was amazing and we were so thankful. She was so proud of herself. We had her home for 6 good months. She was going out, seeing friends and enjoying her grandchildren alongside my dad, her husband. She and my dad went out to dinner to celebrate their 48th wedding anniversary. A week later she passed away. The cancer had metastasized to her kidneys. She has 3 or 4 days of feeling not good prior to this.It can happen fast in major organs.
I am so happy my mom got to have her time back in her home with her family. It was a gift to all of us to be with her and share our lives with her again. Especially the grandchildren!
S., I hope you were looking for a story and I thank you for giving me the chance to share. My mom was a wonderful mom and person. I am sure your aunt is as well. I will check back to see how your Journey goes with your aunt. I wish you very well. Stay on top of it and make sure she always has someone with her at appointments and procedures.
Best Wishes

My aunt had inflammatory breast cancer. She was stage 3 when they found it. She also had a double mastectomy, and went through all of the recommended treatments - chemo, radiation, weekly injections of interferon (sp?). She had always been a very healthy person (exercised daily, ate right) and was one of the most positive, can-do people I have ever known. She went into remission after about 1 year of treatment, but because of the aggressive chemo, she did have lingering health issues (numbness in her feet and hands). Her hair began to grow back. After having been in remission for a year, her doctor found that she had relapsed, so she had to go back into chemo and radiation. This went on for another 2 years. Her body just couldn't handle it anymore, and she became weaker and weaker. She passed away after having fought cancer for 4 years. That was 3 years ago. I still miss her every day.

Some things we learned during her treatment that may prove helpful for your aunt... I don't know how old your aunt is, or what sort of medical insurance she has. My aunt was covered by medicare/medicaid. Patients who are poor get the worst treatment imaginable. Her whole last year of chemo/radiation, she didn't get to see an oncologist once. She kept asking to see an oncologist, because she felt it was strange that the doses she was on were so much higher than they had been on the first go-around, and she felt soooo much worse, even though they kept telling her that all signs said that she was heading toward a second remission. Finally, she was able to see the oncologist, who basically admitted that she was on twice the dose she should have been on. He had never even met her when he wrote the prescription and treatment plan. Note - the cancer wasn't what killed her. It was the aggressive chemo that killed her (she died of a heart attack). So... if your aunt only has medicare as insurance, she and the rest of the family are going to need to advocate for her. Insist that an actual oncologist sees her, not just a nurse. My aunt may have survived if she had had better medical care (or at least better oversight over her medical care).

Anyhow, I will keep your aunt in my thoughts, and will hope for her speedy remission. They are making advances all the time in the treatment of breast cancer, and this will benefit your aunt in her treatment. Be there for her; she can beat this!

Friend of mine has inflammatory breast cancer (cancer is not just lumps, ladies, get anything odd checked out!) and it's scary stuff. I wish the best for your aunt and my friend. I don't blame her for going for the double mastectomy. There's a lot they can do now. Another friend had a double mastectomy, not because she was sick, but because her mother died of cancer. She just finished 4 months of tissue expanders and is getting her implants soon. So while it varies person to person, I would expect her to have drains, muscle weakness and it to be a lengthy multistep process.

So sorry to hear! My cousin was diagnosed when breastfeeding her newborn. She had a double masectomy and aggresively fought it with many surgeries, radiation, chemo etc... she was cancer free for a time but it came back in her brain. She fought for 3 years or so and then passed away, leaving 2 little ones behind. It was awful, fast and nondiscriminatory. I have since learned that basically when someone finally goes in because of IBC it is already stage 3 or 4 and a rough road ahead. Many drs. don't even recognize it.
Will be praying for your family!

I was diagnosed with IBC a year ago this month. I have to admit that reading all these other stories is really kind of scary, lol.

All of a sudden I felt a huge lump on my left breast. It was fairly high on my chest, almost high enough that I didn't even think about cancer. I didn't do anything for about 2 weeks for that reason. Also, my whole breast was pink, so between that and the lump, I assumed I had some kind of funky infection. I went to my doctor for something else and I did show it to him and he immediately scheduled me for a mammogram and an ultrasound. The ultrasound came up with nothing which meant it was not a harmless cyst. The mammogram did show a suspicious lump so a needle biopsy was done next. That confirmed the cancer, stage 3.

I scheduled 2 full days of seeing teams of specialists. One was with Dana Farber and the other was with Mass General. I ended up going to Mass General, loved the surgeon and oncologist. They ended up finding a lump under my left arm in my lymph nodes.

So, the plan was to have 5 months of chemo first to hopefully shrink down the tumors, a double mastectomy next (my idea, the surgeon didn't think I needed to have both removed) and finally 36 sessions of radiation.

Except for the very beginning of the chemo, I did great. It set my appetite off and I was hungry all of the time. Pretty tired though, but thankfully, I don't work anymore so I was able to be a couch potato and watch bad tv and read. The surgery wasn't bad at all, the worst thing about it were the 4 drains I had to live with for 2 weeks. Once they came out, I felt pretty good. They gave me a month to recover from that and then it was daily radiation treatments. I loved my radiation doctor (I can't think of the correct title), she was so sweet and compassionate and patient and hugged me every time she saw me. Of course throughout all of this I was / still am going through a very nasty (not on my end) divorce, selling the house I'm living in (marital home) and his lawyer was constantly threatening to take me to court for not cooperating when I didn't feel like showing the house right after surgery. It's a long and awful story, but you get the picture.

Anyway, I finished up treatment last month, no wait, January, but I still go every 3 weeks for a Herceptin infusion until June. This stuff confuses me to no end. I'm the opposite of women who take Tamoxifen for 5 years. I'm Her2 positive or something like that, lol. I can't remember the terms right now. I feel pretty good, every day I'm feeling a little bit stronger and I'm working on my stamina. I plan on living until my 90's. I've always been a pretty positive person and I think that's half the battle.

It's really scary in the beginning, I'll admit to that. But if you have a good medical team and I had the best in Boston, it makes a huge difference. They kept telling me they would get me through this and they did.

Ladies if you ever see one or both breasts any shade of pink, get to the doctor immediately. This cancer is also in the skin, hence the inflammatory part. It does inflame the skin, at one point my breast was bright pink.

The only "bad" think that scared me was my pathology. 10 out of 12 lymph nodes still had cancer in them and there was a good amount still in my breast when they examined it. That means the chemo didn't do as much as they had hoped for. All I can hope for is that between the surgery and radiation, it's all gone. But who knows. It's certainly not something I think about, you can't drive yourself crazy, you know?

S., if your aunt wants to talk to me about it, I'd be more than happy to speak with her. Just send me a message and we'll take it from there. My most important advice? Stay positive. :)

A friend of mine developed this in her early 50's, also diagnosed at stage 3 or 4. She fought it with everything available at the time (about 10 years ago). It was a very aggressive cancer, and I'm sad to report that she died in a few months. Treatments may have improved a bit since.

I'm sending up a prayer for your aunt's recovery.