BS: Inflammatory Breast Cancer

Subject: BS: Inflammatory Breast Cancer
From: SharonA
Date: 25 Jun 06 - 10:58 PM

No tittering, guys (pun intended); this is serious. Just received an email from a friend with this link to a video report, and thought I'd pass it on to the Forum:

http://ww3.komotv.com/global/video/popup/pop_player.asp?ClipID1=785456&h

Anybody ever hear of "Inflammatory Breast Cancer" before? I had not. According to the linked video, neither have a lot of other people! Apparently, annual X-rays and self-exams aren't enough; there are other symptoms besides lumps to watch out for. According to the Mayo Clinic site (http://www.mayoclinic.com/health/inflammatory-breast-cancer/DS00632/), these are:

- A breast that appears red, purple, pink or bruised
- A tender, firm and enlarged breast
- A warm feeling in the breast
- Itching of the breast
- Pain
- Ridged or dimpled skin texture, similar to an orange peel
- Thickened areas of skin
- Enlarged lymph nodes under the arm, above the collarbone or below the collarbone
- Flattening or retraction of the nipple
- Swollen or crusted skin on the nipple
- Change in color of the skin around the nipple (areola)

Amazingly, the Susan G. Komen breast-cancer website isn't very helpful about this subject (even though, in the video report linked above, it is claimed that the site would be updated to include more info): their downloadable PDF didn't download, and there's no text article that gives an overview such as the Mayo site has. Moreover, the Komen site's search results for "inflammatory breast cancer" include an article about "Benign Breast Changes", and that reference to "benign" is terribly misleading and could be dangerous if someone sees that and assumes she (or he!) doesn't need to read further.

Subject: RE: BS: Inflammatory Breast Cancer
From: GUEST,worried bloke
Date: 26 Jun 06 - 12:59 AM

my right bollock has been a bit tender for a few weeks..


and i got a large itchy mole on my neck..


worrying about cancer all the time is a ......


no.. i cant joke about it.. its too f***ing serious..


should go and risk miserable bastard Dr
telling me i'm a waste of time and national health resources hypercondriac again

Subject: RE: BS: Inflammatory Breast Cancer
From: Crystal
Date: 26 Jun 06 - 06:28 AM

As a breast cancer researcher I can't say I've ever heard of "Inflammatory breast cancer" I think it may be somthing that someone heard somwhere and got wrong.
All the symptoms mantioned on that list are ones to look out for anyway as the first manifestation of the cancer may not be a palpable lump!

Subject: RE: BS: Inflammatory Breast Cancer
From: manitas_at_work
Date: 26 Jun 06 - 07:10 AM

Worried Bloke, get it checked. It could just be orchitis but even that can be very painful have have you laid up for months.

Subject: RE: BS: Inflammatory Breast Cancer
From: Bobert
Date: 26 Jun 06 - 08:24 AM

I know more about it than I want to talk about... My wife Judy died from it October 2, 1996 after a corageous 17 month battle... The survival rates for inflamatory breats cancer back then was less than 10%...

Sniff...

Bobert

Subject: RE: BS: Inflammatory Breast Cancer
From: Crystal
Date: 26 Jun 06 - 10:18 AM

Ah yes, now I know what it is (I checked my notes)! I forget what I learnt it was called, but Inflammatory Breast Cancer is an Americanism it was named after the person who discovered it I think, somthing beginning "von" although that might be a skin cancer! it occures quite deep in the breast so you may not actually feel a lump, but it blocks lots of smaller lymph nodes, causing swelling as lymph fluid is trapped in the breast tissue. "normal" breast cancer (if there is such a thing) usually occures in the mammary glands which are much closer to the surface.
Inflammatory breast cancer is not usually treated with Tamoxifen as it usually has no oestrogen receptors, it is also much more difficult to eradicate as cancer cells are more likely to mestasise and settle in different areas of the lymphatic system.
Very nasty. One of the cell lines that I am experimenting on has similar properties. My advice is to eat lots of oily fish, it appears to have some protective properties.

Subject: RE: BS: Inflammatory Breast Cancer
From: SINSULL
Date: 26 Jun 06 - 10:23 AM

I know all about it. Fortunately mine turned out to be cat scratch fever which took up residence in my lymph nodes and spread to my breast. Nasty business and biopsy scars to prove it.
My GP said all along that it wasn't cancer but I didn't want to take a chance that he was wrong. Large, ropy, tender things in all directions and a huge, inflamed mass under my arm. YUCHH!
Get them checked annually ladies!
SINS

Subject: RE: BS: Inflammatory Breast Cancer
From: Stilly River Sage
Date: 26 Jun 06 - 10:35 AM

Not for the faint of heart.

Do mammograms show this at all?

Subject: RE: BS: Inflammatory Breast Cancer
From: SharonA
Date: 26 Jun 06 - 10:37 AM

Wow, Bobert, I had no idea. I'm deeply sorry for your loss.

Crystal's initial post exemplifies the lack of awareness out there. Crystal, I'm glad you put your researching skills to work here; thanks for the info. It's scary to know that part of the problem is a confusion over nomenclature of the condition. If Inflammatory Breast Cancer (IBC) is an Americanism, what is it called where you are?

Crystal's statements about lumps are correct; according to what little I've found, IBC does not present as a palpable lump but as a "sheet" of cells, difficult or impossible to detect by self-exam or even with the standard mammogram. Apparently the inflammation of the skin of the breast can look like an infected spider bite or like mastitis, and that symptom can fool some doctors (check out the pic on the 2nd page ["Signs and Symptoms"] of the Mayo Clinic site that I linked in my first post -- it's graphic so I didn't link directly to that page -- let the kids be warned). But when it's IBC, there's no fever, and of course it won't clear up with antibiotics.

Sins, the annual check is great advice, but in the case of IBC symptoms one should never wait that long; in fact, it's so aggressive that one shouldn't wait at all.

Here's some more useful info, edited from the Mayo Clinic site:

"Despite its name, inflammatory breast cancer isn't caused by an inflammation or infection. Inflammatory breast cancer occurs when cancer cells clog the lymphatic vessels in the skin overlying the breast. The blockage in the lymphatic vessels causes the red, swollen and dimpled skin that's a classic sign of inflammatory breast cancer.

"Because inflammatory breast cancer progresses rapidly, by the time most women seek medical advice, the cancer is already quite advanced. If you notice any of the signs and symptoms of inflammatory breast cancer, see your doctor right away.

"If you're being treated for a breast infection (mastitis), but your signs and symptoms last longer than a week after starting antibiotics, ask your doctor to do some imaging studies of the breast or to perform a breast biopsy. If these test results show no signs of cancer, but your signs and symptoms appear to be getting worse, talk with your doctor about performing another biopsy or ask for a referral to a breast specialist... [A]dditional tests [include] a chest X-ray, computerized tomography (CT) scan of your chest and abdomen, and bone scan, to check for the presence of cancer cells in other parts of your body (metastasis).

"Historically, inflammatory breast cancer was treated by surgery and was associated with a 100 percent mortality rate. However, significant progress has been made in recent years using a combination of treatments, including chemotherapy, surgery and radiation therapy. The combined-treatment approach has vastly improved the prognosis for a woman with inflammatory breast cancer. What was once universally fatal is now a disease that results in half of women diagnosed being alive in five years and one-third of women diagnosed surviving 10 or more years."

Yikes, these survival rates are still way too low for the state of the art of medical technology to tolerate. Wonder how long it will take for the health-care industry to replace routine mammograms with routine MRI's and/or CT's.

Subject: RE: BS: Inflammatory Breast Cancer
From: SharonA
Date: 26 Jun 06 - 10:56 AM

Stilly asks: "Do mammograms show this at all?"
The answer seems to be "no", from what I've gathered so far. But thanks for the pix, SRS. They're much more comprehensive than what I'd found (why didn't I think of searching Google for images?!).

I notice on your link that the Inflammatory Breast Cancer Research Foundation has a logo with what almost looks like one-half of the ubiquitous "ribbon" (if it were cut lengthwise), in red. The Foundation's site has a lot more info about IBC, including the following statistics: "African Americans have a higher incidence of IBC than do Caucasians and other ethnic groups (10.1%, 6.2%, and 5.1%, respectively)... Age 52 [is the] median age at time of diagnosis of IBC versus age 62: median age at time of diagnosis of [other forms of] breast cancer." Here's a link to http://www.ibcresearch.org/

Subject: RE: BS: Inflammatory Breast Cancer
From: SharonA
Date: 26 Jun 06 - 12:01 PM

About the "awareness ribbon" reference from my last post: Looks like the red ribbon has already been taken by the AIDS awareness bloc. Of course, the pink ribbon is used widely for breast cancer awareness, but if there's so little awareness of IBC even within the breast-cancer-awareness community, I should think that something else is needed to target attention on IBC. Wonder what ribbon color is still available to use... pink with red spots, perhaps?

Subject: RE: BS: Inflammatory Breast Cancer
From: GUEST
Date: 26 Jun 06 - 01:30 PM

Great. I'm 52 this birthday. I'm scheduled for a diagnostic mammogram on Friday. My annual checkup was a couple of weeks ago, no lumps, but there is discomfort on the left side.

Subject: RE: BS: Inflammatory Breast Cancer
From: SharonA
Date: 26 Jun 06 - 03:42 PM

I wish you the best, GUEST. Hope it turns out to be nothing serious. But if your second mammogram is inconclusive, be assertive and insistent about finding out what exactly is the cause of your discomfort. If the doctors are scratching their heads and shrugging their shoulders, find a knowledgable specialist.

If you have access to a university hospital or other research hospital, you're likely to have better luck than with a smaller local facility. (I have certainly found that to be true with my own condition -- sarcoidosis, which the docs thought might be lung cancer at first because the nodules looked similar to cancer cells to the less-trained eye -- and my university-hospital pulmonologist wrote about my unusual case for a medical journal!)

Good luck, and keep us posted. You too, Worried Bloke.

Subject: RE: BS: Inflammatory Breast Cancer
From: Crystal
Date: 27 Jun 06 - 06:20 AM

Sharon I'm not sure what IBC is called here, I did not learn to call it that in uni, but I did only study it as part of a wider module about Breast cancer.
Only 1-2% of breast cancers are IBC though, indeed you have more chance of getting another type of tamoxifen insensitive tumour and a FAR greater liklyhood of developing a tumour which CAN be treated using tamoxifen (and Herceptin). However in post menopausal women regular mammograms are ESSENTIAL and all women should check their breasts at least once a month!
1 in 9 women will develop some form of breast tumour in their lifetimes so get your 5 pieces of fruit and veg a day and eat oily fish twice a week! It may not totally protect you but it has been seen to help produce a positive outcome!

Subject: RE: BS: Inflammatory Breast Cancer
From: SharonA
Date: 29 Jun 06 - 08:21 AM

Thanks, Crystal. Where is "here" and what is "in uni" ("in university", I'm guessing?)?

Agreed that IBC is quite a rare form of cancer compared to those that form lumpy tumors detectable through mammograms and through touch during self-exams. I'm waving the warning flag because the usual breast-cancer-awareness messages out there simply do not inform folks that there IS a form of breast cancer that CANNOT be detected by looking for a lump. Very few women even know that IBC exists.

Yes, absolutely, all women should check their breasts at least once a month (and, um, men too!), but not just for lumps! Everyone should also check for the IBC symptoms listed above! If you should detect any of them, don't delay in getting them checked out. If your doctor is dismissive about it, find a knowledgable specialist who will schedule the proper tests to make a correct diagnosis and, if you do have IBC, treat it aggressively.

Subject: RE: BS: Inflammatory Breast Cancer
From: Crystal
Date: 29 Jun 06 - 09:38 AM

Here is Scotland, and Yes, Uni is University (University of Dundee to be exact!)

Subject: RE: BS: Inflammatory Breast Cancer
From: Bobert
Date: 29 Jun 06 - 01:01 PM

Well, in my wife, Judy's, case a lump was found by routine examination jsut like non IBC cases and needle biopsy was done which found cancer cells and then a lumpectomy was performed, followed by chemo-therapy... She did not do well with the chemo (C-A-T) and the Taxol made here feet burn so badly she couln't walk but had to crawl...

Up to then there was no talk if IBC and only after the area around the lumpectomy got red was the diagnosis made... I'm sure that by now there a better ways to diagnose IBC...

When the IBC was finally diagnosed she had the mascetomy but by then the IBC had mastisized to the lung, lymp nodes and finally to her brain...

A dreadfull disease, indeed...

Bobert

Subject: RE: BS: Inflammatory Breast Cancer
From: GUEST
Date: 05 Jul 06 - 06:09 PM

I just had a mammogram today and preliminary result are good. I have been having nipple pain in my right breast. This is the only symptom I have had. I am concerned with IBC. Should I ask for MRI? Would that show it up?

Subject: RE: BS: Inflammatory Breast Cancer
From: Crystal
Date: 06 Jul 06 - 11:28 AM

Usually you should wait to see two symptoms together, especially as nipple pain is a symptom of a whole load of other problems! Also if you are in the UK and want an MRI quickly you may have to go private!
However if it adds to your peace of mind then go for it!

Subject: RE: BS: Inflammatory Breast Cancer
From: GUEST
Date: 06 Jul 06 - 12:06 PM

BTW: GUEST of 05 Jul 06 - 06:09 PM is not the same as GUEST of 26 Jun 06 - 01:30 PM. The first one would be me, and my mammogram and followup (same appointment) sonogram came up clean. Probably just tender because of extra recent exercise.

Subject: BS: Rare Form of Breast Cancer
From: alanabit
Date: 07 Aug 07 - 08:18 AM

It is quite possible that someone has covered this before, but I would like to pass on an e-mail about breast cancer, which I received from my sister this morning. Maybe Mudcatters with female relatives, friends acquaintances etc would like to pass it on:

Subject: FW: RARE FORM OF BREAST CANCER.
Please forward to all of the women in your lives .Mothers,    Daughters,    Sisters, Aunts, Friends, etc.
In November, a rare kind of breast cancer was found. A lady developed a rash on her breast, similar to that of young mothers who are nursing. Because her mammogram had been clear, the doctor treated her with antibiotics for infections. After 2 rounds, it continued to get worse, so her doctor sent her for another mammogram. This time it showed a mass. A biopsy found a fast growing malignancy. Chemo was started in order to shrink the growth; then a mastectomy was performed; then a full round of Chemo; then radiation. After about 9 months of intense    treatment, she was given a clean bill of health. She had one year of living each day to its fullest. Then the cancer returned to the liver area. She took 4 treatments and decided that she wanted quality of life, not the after effects of Chemo. She had 5 great months and she planned each detail of the final days. After a few days of needing morphine, she died. She left this message to be delivered to women everywhere: Women, PLEASE be alert to anything that is not normal, and be persistent in getting help as soon as possible.      
Paget's Disease: This is a rare form of breast cancer, and is on the outside of the breast, on the nipple and aureole It appeared as a rash, which later became a lesion with a crusty outer edge. I would not have ever suspected it to be breast cancer but it was. My nipple never seemed any different to me, but the rash bothered me, so I went to the doctor for that. Sometimes, it itched and was sore, but other than that it didn't bother me. It was just ugly and a nuisance, and could    not be cleared up with all the creams prescribed by my doctor and dermatologist for the dermatitis on my eyes just prior to this outbreak. They seemed a little concerned but did not warn me it could be cancerous. Now, I suspect not many women out there know a lesion or    rash on the nipple or aureole can be breast cancer. (Mine started out as a single red pimple on the aureole. One of the biggest problems with Paget's disease of the nipple is that the symptoms appear to be harmless. It is frequently thought to be a skin inflammation or    infection, leading to unfortunate delays in detection and care.)      
What are the symptoms? 1. A persistent redness, oozing, and crusting of your nipple    causing it to itch and burn. (As I stated, mine did not itch or burn much, and had no oozing I was aware of, but it did have a crust along the outer edge on one side.) 2. A sore on your nipple that will not heal. (Mine was on the aureole area with a whitish thick looking area in centre of nipple). 3. Usually only one nipple is affected. How is it diagnosed? Your doctor will do a physical exam and should suggest having a mammogram of both breasts, done immediately. Even though the redness, oozing and crusting closely resemble dermatitis (inflammation of the skin), your doctor should suspect cancer if the sore is only on one    breast. Your doctor should order a biopsy of your sore to confirm what is going on.
This message should be taken seriously and passed on to as many of your relatives and friends as possible; it could save someone's life. My breast cancer has spread and metastasised to my bones. After receiving mega doses of chemotherapy, 28 treatments of radiation and taking Tamaxofin. If this had been diagnosed as breast cancer in the beginning, perhaps it would not have spread...      
TO ALL READERS: This is sad as women are not aware of Paget's disease. If, by passing this around on the e-mail, we can make others aware of it and its' potential danger, we are helping women everywhere. Please, if you can, take a moment to forward this message to as many people as possible, especially to your family and friends. It only takes a moment, yet the results could save a life.

---

New thread combined with old.

Subject: RE: BS: Rare Form of Breast Cancer
From: jacqui.c
Date: 07 Aug 07 - 08:33 AM

Thanks Alan - if this saves just one woman it is worth passing on.

Subject: RE: BS: Rare Form of Breast Cancer
From: Liz the Squeak
Date: 07 Aug 07 - 08:38 AM

It has been mentioned here before, but yes.. it's always worth mentioning again.

If you want to donate money to Cancer Research UK for Breast Cancer research, I'm sure my justgiving.com page is still active after my sponsored walk for it earlier this year. I'm there as Liz the Squeak too, so check it out.

LTS

Subject: RE: BS: Rare Form of Breast Cancer
From: Bobert
Date: 07 Aug 07 - 08:38 AM

I'm not sure what the medical term is for this cancer but the generic term is "inflamatory breast cancer"... This is what took my late wife Judy, in 1996... The survival rate for this aggressive cancer is very low... Judy survived 17 months and went thru all of the above, and some...

Bobert

Subject: RE: BS: Inflammatory Breast Cancer
From: GUEST
Date: 07 Aug 07 - 11:09 AM

Bobert, I'm so sorry to hear of your wife's encounter with IBC. THe poor woman went thru hell. You did as well watching her suffering.

I've had a double masectomy about 3 yrs. ago. Last year at this time I had pain, redness, heat in a fold of skin left after the surgery. I searched all over the internet & found a great site* which spoke of IBC. Went immediately to my GP - he never heard of IBC. Then to my oncologist - he prescribed 2 wks. of anti-biotics. HE also sent me to a surgeon(I guess-really for a second opinion) This JERK laughed at me when I said "I read about this on the internet!" From questions I asked-I think he _Never_ heard of IBC. I can't tell you how ticked off I was at this dope.

In any event - it took an extra week of anti-biotics to clear this up. (I did not have the orange peel look).

*On the site- A Dr. from Nova Scotia had all the symptoms-(She had never heard of IBC)-she was put on antibiotics--in the two weeks delay-it had spread to her liver. I do not know how she made out. I will try to find that site & post it here.

Ladies: A cautionary: Cancer does not always present itself with a lump. I had no lump in either breast. Don't put off mammograms because no one in your family had BC. GO GET A MAMMOGRAM. Then--if you are told you do have cancer---GET TWO OTHER OPINIONS!!!
My left breast was taken - and it was later found to be non- cancerous. My Dr. was head of Surgical oncology at Vassar Bros. Hospital-Poughkeepsie, NY. I thought he was the best!   Little did I know - Shit rises! You can see--I'm still sooo angry!

Subject: RE: BS: Inflammatory Breast Cancer
From: GUEST
Date: 07 Aug 07 - 11:11 AM

The above (11:09) is mine-Mickey191

Subject: RE: BS: Inflammatory Breast Cancer
From: GUEST,MICKEY191-GUEST
Date: 07 Aug 07 - 12:36 PM

http://ibcsupport.org    (Click on "Browse Messages)

The site I mentioned above will give you a wealth of information. Some of the emails from those seeking answers are filled with tales of suffering because so many were delayed or denied treatment by doctors who do not know about the problem of IBC.   Susan Love - a so called expert is quoted from her book:

The Myth of Urgency
Dr. Susan Love: Breast cancer is not a fast-growing disease most of the time. It's [probably] been there eight to ten years when you find it. You've either spread or have not spread. There's no emergency.
I'm not saying you should wait six months or a year. But if you can't get in for a mammogram right away, it's not spreading during that time. It's a slower process than that. If you're newly diagnosed, you
can take time to get a second opinion, to read and figure out your options. You don't have to rush things.
____________________________________________________
The Truth About Inflammatory Breast Cancer Must Get Out. We are on a mission to tell the ignorant in the medical field that this disease is out there. Speed in diagnosis is imperative. Just read some of the emails of women who are suffering & may very well be dying because of medical malpractice.

Mickey191

Subject: RE: BS: Inflammatory Breast Cancer
From: Bee
Date: 07 Aug 07 - 01:24 PM

I understood that the cancer you are all calling IBC is actually known as Paget's disease. Am I wrong? Is this a case of Americans inventing a term no one else uses? There was a CTV medical special about Paget's a few months ago. It is relatively rare, but people should be aware of it.

Subject: RE: BS: Inflammatory Breast Cancer
From: SharonA
Date: 07 Aug 07 - 02:20 PM

"Is this a case of Americans inventing a term no one else uses?"

Right now in the American medical field, it seems that the trend is to move away from calling diseases after people. What has been known commonly as Lou Gehrig's Disease is now being referred to by its more descriptive name, Amyotrophic Lateral Sclerosis, with "Lou Gehrig's Disease" in parentheses. Alzheimer's hasn't undergone this transition yet, but I have no doubt that it will!

As for Paget's Disease, this name is confusing because it is the common name of TWO different diseases: (a) a metabolic disease of the bone; and (b) inflammatory breast cancer. In this case, it makes sense to try to "phase out" the use of the term "Paget's Disease" for inflammatory breast cancer.

Subject: RE: BS: Inflammatory Breast Cancer
From: Mickey191
Date: 07 Aug 07 - 03:57 PM

One would expect that a DR. would be aware of the nomenclature(s) of a disease. The descriptive IBC makes more sense to me. On the various sites I've been to, Paget's disease is never mentioned.

Sharon-you are correct - it makes more sense to use the descriptive name.

Subject: RE: BS: Inflammatory Breast Cancer
From: Jeri
Date: 08 Aug 07 - 11:33 AM

Dr. Susan Love seems dangerously wrong. While there's no reason for panic, it sounds as though a sense of urgency IS appropriate.

From the Mayo Clinic's page on Inflammatory Breast Cancer (sections not quoted in their entirety):

Introduction

Typically women with inflammatory breast cancer are diagnosed at a younger age than those diagnosed with other forms of breast cancer. They're more likely to experience cancer spread (metastasis), and they have a greater chance of succumbing to the disease than women with noninflammatory breast cancer. In very rare circumstances, inflammatory breast cancer is diagnosed in men.

When to seek medical advice

Because inflammatory breast cancer progresses rapidly, by the time most women seek medical advice, the cancer is already quite advanced. If you notice any of the signs and symptoms of inflammatory breast cancer, see your doctor right away.

If you're being treated for a breast infection (mastitis), but your signs and symptoms last longer than a week after starting antibiotics, ask your doctor to do some imaging studies of the breast or to perform a breast biopsy. If these test results show no signs of cancer, but your signs and symptoms appear to be getting worse, talk with your doctor about performing another biopsy or ask for a referral to a breast specialist.