Inflammatory Breast Cancer

My pick of sites for IBC (inflammatory Breast Cancer)

Guidelines for the diagnosis and treatment of IBC: International expert panel on inflammatory breast cancer: consensus statement for standardized diagnosis and treatment

IBC factsheet: from www.cancer.gov

Research on IBC including complementary approaches: IBC Watch

If you are preparing to undergo a treatment, I’ve put some ideas on what to expect and how to prepare on the PRACTICAL TIPS AND LINKS page, based on my own experience. Please submit  any other advice or comments on my blog page (HOME).

Introduction: What is IBC?

This summary is taken from Toddler Planet.

Inflammatory breast cancer is the rarest and most deadly of the breast cancers. It strikes young women as often as older women, breastfeeding mothers as often as grandmothers, and women with and without a history of breast cancer in their family. It does not always form a lump in the breast. Instead, it forms in sheets and nests in the lymphatic system of the skin, appearing only after it clogs the lymph system with cancer, causing the skin to swell and turn red as if in anger.

Sometimes, it appears first as a mark like a bug bite, or a bruise that just won’t heal. Sometimes, the texture of the skin changes first, becoming tough, hard, or with little dimples like an orange peel. Sometimes, it feels thick to the touch, or hot, or just … different.

Inflammatory breast cancer is often misdiagnosed as mastitis, especially in nursing women. The important thing to know is, if you are diagnosed with mastitis and it doesn’t clear up with 10 days of antibiotics, SOMETHING ELSE may be wrong. Please, please go back to your OB/GYN or other health care professional and talk to her again. Ask her for tests to rule out inflammatory breast cancer. Tell her that you’re worried, that something just isn’t right. Insist on futher tests and a skin and/or core biopsy. Because each week that you delay is a week that this cancer will grow and expand and be just that much harder to eradicate.

Survival rates for women diagnosed with inflammatory breast cancer are grim. Only 25 to 50 percent of women will survive five years. Believe it or not, this is a HUGE improvement over the survival statistics of just a few years ago — when only 1-2% could expect to be alive five years after diagnosis. Even with chemotherapy, surgery, and radiation, 90% of women will suffer a recurrence. This is a lifelong battle for those that are diagnosed, and it is a very difficult disease to battle, as it’s one of the few cancers that are obvious on the surface of the body; as it marches across a woman’s breast, it is very hard to watch.

On a more positive note…When the cancer started in 2007, I never expected to make it to the next decade. And yet, here I am, and in some ways better than I have been in a long time - the hormones are no longer raging civil war within me. I try hard not to dwell on the negative parts, because on a day-to-day basis I can do everything I used to be able to do, I am not in pain and have my independence. On the positive side, I have enjoyed some special time with my son. I have been fortunate to tolerate the treatments well.

IBC overview

The MD Anderson Center, Texas is leading research into inflammatory breast cancer.

Ann Arbor, University of Michigan has a dedicated IBC clinic; interesting statistics on survival rates and outline of treatments.

American Cancer Society overview and brief summary of latest treatments.

Research article:Inflammatory breast cancer: Clinical progress and the main problems that must be addressed by Sharon H Giordano and Gabriel N Hortobagyi, Department of Breast Medical Oncology, The University of Texas MD Anderson Cancer Center, gives insight into the current situation with IBC, including statistics and areas for research.

Inflammatory Breast Cancer Research Foundation
Cancer.Net
IBC support website
The Inflammatory Breast Cancer Foundation
The University of Texas MD Anderson Cancer Center
National Cancer Institute; Inflammatory Breast Cancer Questions and answers
Breast Cancer Network of Strength
National Comprehensive Cancer Network overview
Cancer network article on current progress - Overview, symptoms and a picture

How is IBC treated?

Inflammatory Breast Cancer NCCN guidelines (National Comprehensive Cancer Network) - overview of treatment and useful links
International expert panel on inflammatory breast cancer: consensus statement for standardized diagnosis and treatment

The value of using a PET/CT scan with Inflammatory Breast Cancer
IBC help and support
National Cancer Institute fact sheet
Cancer Research UK
Breast Cancer Care
Mayo Clinic
Breast Cancer Care
Inflammatory Breast Cancer Association
Virtual Medical Centre
Cancer.net

Patient.co.uk, a general overview for all breast cancer treatment and the  support a patient might expect.

Breast reconstruction & IBC

IBC help and support
IBC Research Foundation

Return of IBC after a mastectomy – what it looks like

IBC help and support

IBC discussions and contacts

BreastCancer.org discussion board for IBC
BreastCancerCare forum for Inflammatory Breast Cancer (UK). Recommended!
IBC Support, mailing list
About IBC Chat room
About IBC Discussion forum
IBC Support Group mailing list
My Space, IBC Education
For Metastases, BCMets and Club Mets
Breast Cancer Care: Ask the Nurse and Forum
Advanced Breast Cancer Support Community for those with advanced/metastatic breast cancer.
BreastCancer.org discussion board for stage IV breast cancer survivors
Cancer Research UK forum - IBC thread
Mothers with Cancer forum

IBC blogs & personal experiences

Ladies with courage and spirit fighting IBC all round the world…

In America….

I Can’t Complain Any More Than Usual (California)
Never Lose Spirit Stacy (Little Rock, Arkansas)
Kickin’ Cancer’s Ass Julie & Jess (Washington)

In Canada…
Lynn’s Inflammatory Breast Cancer blog.(Ontario)

Rest in Peace
ToddlerPlanet Susan; a fantastic campaigner for IBC; an intelligent, perceptive lady; she has faded too soon. I wish her family strength; it is a great loss.

Get out Gertrude! - An articulate, caring lady - I miss her greatly.

Both these ladies fought IBC with dignity and integrity. They were great communicators, and I gained great support and insight from their posts.

Publications available from Amazon (though I haven’t had chance to read them myself):

Meredith Norton, Lopsided. How having breast cancer can be really distracting (Amazon)

The Handbook of Humor, Survivor Stories, Support, and Hope for People with Inflammatory Breast Cancer: You Are Not Alone by Dee Kantorowicz (Paperback - 27 Nov 2007)

HealthScouter Breast Cancer: Inflammatory Breast Cancer, Breast Cancer Stages, and Breast Cancer Treatment (HealthScouter Breast Cancer) by Kathy Wong (Kindle Edition) - 30 Jun 2010)

Inflammatory Breast Cancer: Explanation, Advice, Support by Verite Reily Collins (Paperback - 25 Aug 2010)

Inflammatory Breast Cancer: 22 (Breast Disease) by S.M. Swain (Paperback- 2 Jun 2006)

21st Century Ultimate Medical Guide to Inflammatory Breast Cancer - Authoritative, Practical Clinical Information for Physicians and Patients, Treatment Options (Two CD-ROM Set) by PM Medical Health News (CD-ROM - 27 Jan 2009)

Before I Say Goodbye by Ruth Picardie(- 7 May 1998)

Cassandra Jardine has stage four cancer - adenocarcinoma originally sited in the lung and spread to pelvis and lymph glands. I found her article in The Daily Telegraph,  “If only it could be this simple for the rest of us”, referring to Michael Douglas, very interesting as she raises issues about having a “cinderella” cancer - one that is more unusual, and so receives less research. She notes the problem with patients  raising awareness of the cancer, when the cancer is aggressive and survival rates lower than other cancers.

Research

Inflammatory Breast Cancer: the Disease, the Biology, the Treatment from CA, A Cancer Journal for Clinicians

http://www.bbc.co.uk/news/health-17740690 - study published in Nature suggests that breast cancer could be categorised into10 separate diseases, according to the behaviour at a genetic level. This may lead to better targetting of therapies in the future.

I’m trying curcumin and feeling positive results. I have not had any side effects. There are quite a few research papers. IBC Watch - contains summaries of treatments and developments for inflammatory breast cancer, and comments on possible benefits of  green tea, curcumin, ginger, ginseng and resveratrol (found in the skin of red grapes, and in lesser amounts in blueberries). Also reishi mushrooms. This site (ibcwatch) gives links to the related research.

This article gives some information on the use of turmeric or curcumin.

An article from the bbc  describes a trial being carried out  using curcumin in the UK for people with bowel cancer: http://www.bbc.co.uk/news/health-17959521

Another article from the bbc also discuss the potential benefits of curcumin: http://news.bbc.co.uk/1/hi/health/8328377.stm

http://www2.le.ac.uk/news/blog/2012/may/university-cancer-centre-begins-curcumin-trial has details of the curcumin/bowel cancer trial at Leicester University.

Curcumin is available as a supplement eg from the Penny Brohn Bristol Cancer Care website (Medpro brand). or Ageless Cures/Doctors purest (web page says this formulation is used in medical research trials)

I  have found reishi supplements as part of a mushroom combination from Solgar.

Vitamin D seems to be getting a lot of support, and I need to find some background for this. Vitamin D3 can be created by the skin when the UV index is more than 3, and is also found in oily fish and eggs.

Watercress may also be helpful: Watercress may ‘turn off’ breast cancer signal

Publications and information from the MD Anderson Center, University of Texas, Inflammatory Breast Cancer Research Program.

Clinical Trials - US

While searching on the web for more information on natural ways of treating IBC, came across  this article.

Eli Lilly are running a phase 1 trial for a new treatment  LY2784544: JAK2 Inhibitor (Abstract # 2820) (article in Star Global Tribune)

CancerConsultants.com
Morgan Welch Inflammatory Breast Cancer Research Program, at the University of Texas, including articles, MD Anderson Hospital IBC trials for Inflammatory Breast Cancer
IBC help and support – research articles
CancerConnect.com article discussing stem cell treatment
Cancer Research UK
Cancer Web
Breast Cancer Research
Advice and links to help with research - cancerguide.org website.

Medical News Today - 15 June 2009: Researchers Identify Key Gene in Inflammatory Breast Cancer. The suggestion is that this could lead to new approaches to treating IBC. The original paper is available on Nature.com, but is in technical language.
Lectures on Inflammatory Breast Cancer for professionals (MD Anderson Cancer Center)

Statistics

Statistics can be interpreted in many ways. There is a wonderful discussion of this, The Median isn’t the Message, by Steven Jay Gould, on the cancerguide.org website, which ponders on what the median means and points out some factors which indicated he would do better than average. This website also contains some useful tips on interpreting statistics.

Survival rates

According to a study by the Royal Marsden Hospital, there is a small group of patients who survive more than 10 years - bear in mind that these statistics are between 1990 and 2007, and treatments are improving all the time.

The ibcwatch website also reports patients surviving over 15  years.

The samples that are used for predicting life expectancy are small, and so I’ve come to the conclusion that they are of limited benefit in predicting my life expectancy. There isn’t enough data to track people of my age with exactly the same disease profile, response to treatment and symptoms. So, I looked at the start in order to scope out what was going on, but now put the stats to one side and keep track of any progress in treatments.  It does makes me deeply sad when I think of the lives cut short by IBC.

5 year survival rate – National Cancer Institute fact sheet
Mayo clinic – 5 year and 20 year rates
IBC Research Foundation

How many cases are there?

Cancer Research UK

How many newly diagnosed cases are stage 4?

Mayo Clinic

My medical history

My adult life has been dominated by my hormones being out of balance. The key things that I would pick out are:

- Severe pre-menstrual symptoms
- Pre-eclampsia and unexplained bleeding during pregnancy
- Dislocated kneecaps – might seem like a red herring but there may be a link between the looseness of ligaments and the menstrual cycle. Had knee surgery to shorten ligaments
- Treatment of the hormonal imbalance by Logynon and then Dianette, until I had unexplained bleeding. When I stopped Dianette, I had heavy periods, alternate weeks and although reluctant to go on the pill again, I couldn’t continue with that situation so was put on Yasmin/Jasmine.

  • Autumn 2006 - bleeding between periods
  • Feb 2007 - changed to Yasmin/Jasmine from Dianette
  • July 2007 - Inflammatory breast cancer diagnosed, closely followed by secondary liver and bone cancer
  • Aug 2007 - chemotherapy with epirubicin
  • Sep 2007 - tamoxifen
  • October 2007 - portacath fitted
  • Dec 2007 - zoledronic acid injections (bone strengthening)
  • April 2008 - mastectomy
  • April 2008 - Switched to bondronat/ibandronic acid
  • November 2008 - lumpectomy
  • Jan 2009 - radiotherapy to chest
  • March 2009 - Started zoladex injections to suppress behaviour of ovaries
  • Nov 2009 - ovaries removed - oopherectomy
  • Jan 2010 - limping, felt like arthritis, CT scan, issues with pelvis
  • Feb 2010 - radiotherapy to pelvis
  • March 2010 - changed from tamoxifen to letrozole (warned that I may need chemo within 3 to 6 months)
  • April 2010 - started taking curcumin
  • May 2010 - CT scan. No significant changes detected.
  • April 2011 - portacath removed
  • May 2011 - MRI scan of spine, and CT scan to abdomen and neck. Some inflammation in the lower spine but no treatment deemed necessary. No significant changes detected overall (especially liver).
  • Autumn 2011 - plantar fasciitis in left foot and then discomfort in hip; also left side of jaw uncomfortable
  • Jan 2012 - CT scan
  • Feb 2012 - Spine L1 crumbling and pressing in to spinal canal. Danger of spinal cord compression. Five sessions of radiotherapy.
  • August 2012 - CT scan. Evidence of cancer in lymph system. 10mm and 18mm.
  • Sep 2012 - Pain in left hip. five sessions of radiotherapy.
  • Sep 2012 - change from letrozole to exemestane
  • Oct 2012 - change from ibandronate to denusamab injections monthly. Also have Calcichew tablets
  • Oct 2012 - painkillers - dihydrocodeine, cocodamol, solpadol
  • Oct 2012 - Xray of pelvis, MRI of pelvis and spine
  • Nov 2012 - radiotherapy to thoracolumbar spine, start capecitabine. Also have pyridoxine with it.
  • April 2013 - finished capecitabine
  • May 2013 - lymph nodes on left side of neck swollen. Radiotherapy.

I have never smoked. I rarely have alcohol as it makes me feel grotty. I have been having the pill on and off for about 20 years. I have suffered from depression since my teens. There is family history of diabetes, and also of underactive thyroid.