Sheila’s Journey to Fight Metastasized Breast Cancer

Editor’s note: We are pleased to post this guest blog by Sheila Ghosh from the Netherlands, who wrote in response to an email from MBCN president, Shirley Mertz.  Sheila reminds us that mbc affects women around the world. We tend to get US-centric, but Sheila’s experience resonates with all of us. You can follow her blog at http://sheilaghosh.com/ or on twitter: @sheilaghosh.

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Dear Shirley,
Thank you so much for your e-mail asking for people who wish to share their story. I would very much like to share my story with others.

First of all, I am living in Europe, in The Netherlands to be exact. I went to college in the US and lived in the US for 11 years, although I’m a Dutch citizen.

I don’t know if you would want a story from Europe, but I follow MBCN and would like to have a chapter or network like MBCN here in Europe.

My story is one of hope and my recovery feels like a miracle to me.
I was diagnosed with stage 4 cancer in July of 2012, at the first diagnosis, when I was 42. There was no history of breast cancer in my family. Also, I didn’t feel anything in my breast because I was checking for lumps, whereas this tumor felt like my breast bone (upper part of right breast.)

The metastases were spread all throughout my liver, so that it was one and a half times as big, like a deflated soccer ball. My liver was in such bad shape that hormone treatment wasn’t an option because it takes 6 to 8 weeks to start working and my liver was barely working (bilirubin at 50). After the first 10 weeks of weekly chemo’s (AC) didn’t work well enough, I got very sick from infections due to neutropenia. I could not eat or talk because of the mucositis and stomatitis. Meanwhile, my oncologist thought the cancer was growing and didn’t have much hope. I did not think I would live till Christmas of 2012.

Fortunately, I was transferred in October to the National Cancer hospital where I was given Mitomycin-C locally in the liver. Two treatments and two months later the results were so good that much of the cancer in the liver was replaced by scar tissue. The liver stabilized and I could eat and talk again. From January 2013 I took Xeloda which reduced the cancer in the breast and since May 2013 I’ve been on hormone therapy (Letrozole). I’ve been in menopause due to the cancer, not the chemo.

I’ve gone back to work – I work as a IT architect contracting for the government – and have been getting back in shape by exercising and eating healthy. Most of the time I feel great. I look good again and can function almost as before. My message to others is that there is life after hearing you have metastatic cancer, and with the right treatment and frame of mind and support more is possible than you would expect. I’m not cured – the cancer is there but inactive – so as long as the hormone therapy works I’m fine.

I also am part of a social network of other women with mets here, because there are very few resources for people like us. What bothers me especially is that patients with mets often don’t seem to count. The images and fundraising campaigns in the media suggest that either you can be cured (stages 1-3) or else you face imminent death (stage 4) and this frightens people. Research results and treatments for metastasized breast cancer are not easy to find here and there’s a big gap in knowledge between oncologists and hospitals. The many regulations slow down research projects and make the drugs exorbitantly expensive. Still, I am extremely grateful for this second chance I’ve been given and it has made me value my husband, family, nature, friends and my life so much more, I’ve taken up windsurfing and writing and work less.

That’s my story. I’ve been writing about my experiences at http://www.sheilaghosh.com in case you’re interested. This is a public site so feel free to use anything that you find interesting, with a citation/ reference. I hope you don’t mind but I am publishing this letter on my blog so others can follow. If you do mind, let me know and I will remove it.

Please let me know if I can help in any way.

Kind regards,
Sheila Ghosh
The Netherlands

Energy and persistence conquer all things

Editor’s Note: If you enjoyed Sheila’s story, please consider sharing yours. Email your story (500 to 800 words, max) to us at mbcn@mbcn.org. Include your name and phone number–and don’t forget the photo!

Dear Dr. Nancy Snyderman:

I was very disappointed with your story last night on NBC News about an obesity study and breast cancer recurrence. (http://video.msnbc.msn.com/nightly-news/48807195/#48807195)

Most people do not understand risk factors and I would have expected you, as a journalist and doctor, to put it into context. The American Cancer Society says: “Risk factors don’t tell us everything. Having a risk factor, or even several, does not mean that you will get the disease. Most women who have one or more breast cancer risk factors never develop the disease, while many women with breast cancer have no apparent risk factors (other than being a woman and growing older). Even when a woman with risk factors develops breast cancer, it is hard to know just how much these factors might have contributed.”

So this study showed a 25% increase in risk of recurrence if you are obese. That means in laymen terms, that if the recurrence rate is 30%, then obesity will increase your rate to 37.5% (which is a 25% increase in the rate)  So instead of 3 chances in 10 of having a recurrence, an obese woman has 3.7 chances in 10. How many times now will we hear people say–she was fat, so that’s why the cancer recurred—or much more often: she wasn’t fat, so why?

Too much emphasis and story time is spent on risk factors. Most people would be surprised to know that only 15% of those with breast cancer have a family history and less than 10% have the BRCA mutations. Isn’t the real story to be reported this: The vast majority of early stage breast cancer cases and later metastatic recurrences, (which are deadly), happen without researchers knowing why?

We in the metastatic breast cancer community are bracing for October which is a grueling experience for us, with the media concentrating on prevention and early detection, placing the burden on patients to prevent their disease, and, once they get it, to be happy, proud, fighting ‘survivors.’ How about an honest story of those of us living with metastatic breast cancer who had their mammograms, ate well, exercised and had positive thoughts and still got metastatic disease?  Or an honest story about research (or lack thereof) into metastasis, (cancer spreading or metastasizing to vital organs), which is the cause of breast cancer deaths.

We’d be happy to talk to you if you’re interested.

Sincerely,

Ginny Knackmuhs

Metastatic Breast Cancer Network (MBCN)

g.knackmuhs@mbcn.org