Tuesday, 3 March 2015

I made the best decision for me at the time.

Ever since I read , on Sunday afternoon, of the tragic passing of Jess Ainscough  , the Wellness Warrior, I have felt overwhelmed. Cancer is a bitch.

Overwhelmed more by the CONTROVERSY and debate, the judgement,the misguided and factually incorrect comments. I didn't know Jess personally and while I've read her website and knew about her choices , I did not follow them. Amongst other things she advocated a healthy lifestyle and I applaud that.

I am sorry for their loss.

Twelve months ago today, my life was shattered once again with a malignant cancer diagnosis - a much more scary one. Soft tissue sarcoma - Malignant Peripheral Nerve Sheath Tumour. MPNST.

I wondered should I weigh in with my own thoughts.
Dare I voice an opinion.
Sadly, many people with even less knowledge or experience have. Yet, there is nothing mentioned about what finally ended Jess Ainscough’s life.

I feel qualified having faced cancer twice including a rare sarcoma 12 months ago. Jess Ainscough had Epithelioid sarcoma , mine was a different type - sometimes initially with a very similar 'pathological' presentation. 

My husband also had a different malignant sarcoma too 5yrs ago.A dear blogging friend died from a horrible sarcoma too barely 8 months from diagnosis , only 2 years ago. Many knew this special lady. Based on her own research she tried Gerson therapy. Her options for more surgery, radiation and chemo were limited. We chatted about it (Gerson and other treatments) a few times. She was very informed and I respected it.

Mostly, I will refer my opinion to my own experience .Out of respect for Jess Ainscough I'm not discussing her Wellness business, or those who followed her life and story. It is a delicate issue.

I digress, twelve months ago today my life was shattered once again with a malignant cancer diagnosis - a much more scary one. Soft tissue sarcoma - Malignant Peripheral Nerve Sheath Tumour. MPNST.

Sarcomas have such a poor prognosis being a rare kind of cancer. About 1 out of 100 cases of adult cancers is soft tissue sarcoma. There is so little research and treatment options.

There are 50+ different types of sarcoma, they can be grouped into two main kinds: soft tissue sarcoma and bone sarcoma, (Osteosarcomas - Ewings included). Osteosarcomas being rarer.

My sarcoma is genetic and no amount of healthy living, juicing or coffee enemas would either prevent or cure it. Plain and simple. Ingrained into my DNA, into my genes , a fault in my stars.

Sarcoma knows no borders; ethnicity, gender, or economic status.

Sarcomas are different from the much more common carcinomas / cancers. They happen in a different kind of tissue growing in the connective tissues -- cells that connect or support other kinds of tissue in your body. They spread to lungs, brain and other organs.
More common in the muscles, tendons, cartilage, nerves, fat, and blood vessels of your arms and legs, and less so bones , sarcomas can happen anywhere - even in uterus, on genitals and within the abdominal cavity. If it is in the limbs, wide surgical amputation is recommended to ensure complete removal of cancer cells.

Sarcomas have limited treatment options, often by having surgery to remove the tumour there are debilitating side effects. I have at least two Facebook friends, with the same genetic MPNST sarcoma in their leg as I did. Both had a leg amputated , including half their pelvis and sacrum ;both have complications but still live a 'full' life , just not one they would have imagined or chosen.

Others in the group have faced amputation and radical surgery and still died; painfully. It is quite tough for doctors to come up with any suitable treatments in many cases. In the US patients are subject to approvals by insurance companies, limited by money and admission to various trials to extend life. At whatever cost or succumb.

I have complications from surgery nothing I can't cope with, and I have my leg. Though the preferred wide surgical margin was not possible because it was with < 1mm (actually 0 .8mm of my femur) margin. 10mm is the minimum recommended.

The Radiation oncologist asked my surgical oncologist could I return to surgery for a better margin ...
No , not without potentially and unnecessarily awful complications.Amputation was not an option offered.

Even my very esteemed surgeon and radiation oncologist did not agree entirely about radiation. The choice was ultimately mine. It's a balancing act - do more harm or wait and see.

A week after radiation.

I know there is nothing I wouldn't try (using my own critical thinking and beliefs) to extend my life. 
Yet, I can barely imagine having my leg amputated. I would, within reason, try every other option first. I haven't and I hope I never will face such a difficult and life changing decision.

Why didn't Jess Ainscough amputate ? 
Only Jess knows.

I have issue with one of the debates - I can't believe people suggesting and speculating that her vanity and treatment choices caused her 
"preventable death" or "unavoidable death"

Well, I know in many cases (based on my participation a world wide sarcoma support group of 2000+) maybe it would have made no difference. The unpredictability of sarcomas and the wide spectrum of how it affects a person creates uncertainty with treatment options. Yes, some people might get a few more years but at what cost. It is still their choice.

Even the Sarcoma Alliance a worldwide based group that advocates and provides information includes complimentary and alternative therapies. 

Some chemotherapy drugs came from plants or animals originally, such as from the Pacific yew tree, trabectedin from sea squirts, and doxorubicin from a bacterium.
I had both  Paclitaxel and Doxorubicin (Adriamycin) as my main Chemotherapy drugs with Breast Cancer. 

Adriamycin is also used in MPNST sarcomas. My bad, I can't have it for this , if I need it though in the future.

Her mother, Sharyn's passing with Breast Cancer too - even early diagnosis and aggressive treatment sometimes makes a SCRAP of difference.
Eminently treatable ?
I don't always believe that !

Each person's reaction to a cancer drug is different.

I can honesty say I still doubt my decisions , that I didn't had radiation for Breast Cancer (the Oncologists said it wasn't necessary) , that if even if I wanted to I can't have chemo for the sarcoma and also because I had it with Breast cancer - the complications potentially to my heart could be fatal.

So strict are they with the dosages, least they kill you with the treatment. Another (real) friend nearly died during her first chemo, it weakened her immune system so much so. She spent 2 wks in isolation in hospital and away from her children - she told me she thought she was going to die THERE without goodbyes or a chance to have a good death.

We both cried a river of tears while she described the near death experience , as we sat and talked over coffee in a cafe - not a care who was watching and they were . Happily, she is doing well now after two and half yrs.

I would always have chosen cancer drugs because it gives me hope for the future. I made the best decision for me at the time.

Maybe Sharyn Ainscough did too ! Chemo has a 10% chance of a fatal outcome.

The stats say 20 - 30% of women diagnosed with Breast cancer will die no matter what stage at diagnosis.* The survival rate with terminal diagnosis has improved with treatment to extend life but they still die.

Truth - maybe not in the first few years but they don't mention the ones who die after 5 -10 yrs. Some zealous , healthy, exercising clean living juicers live and it seems just as many as those who do nothing 'healthy' at all live too. Note: I am not advocating living unhealthily.

I have dozens of Facebook friends diagnosed with early breast Cancer , who DID all the treatment regimes, mastectomy , chemo and radiation and they still died or are terminal .

One real life friend is undergoing more aggressive chemo after in spread to her hips, other bones and now liver. Terminal and dying in just over 3yrs (under 50)

Another , dear friend with early Breast cancer over 10 yrs ago has just been given a terminal diagnosis after breast cancer metastasized to her lungs. Out of nowhere in 10 years.

Cancer is SH*T and it doesn't follow any rules. Medical intervention is sometimes worst than the natural progression of the disease - especially with sarcoma.

While, I don't disagree either with some of the debate surrounding Jess Ainscough's influence as the Wellness Warrior and promoting the Gerson therapy - it's just so very complex. 

How can we speculate whether her life and death were unnecessarily awful ? It was her journey.

* It is estimated that 20-30% of all breast cancer cases will become metastatic. [O'Shaughnessy, J. "Extending Survival with Chemotherapy in MBC" The Oncologist 2005:10]