My web site is devoted to medical and treatment information about this rare cancer. My blog is devoted to sharing what has been the more difficult part of the journey for me, the emotional and spiritual road I've traveled as a rare cancer survivor.

Tuesday, September 21, 2010

Heat it to Beat It Update!

I read on the Heat it to Beat It web site that the event was even more successful than first thought! It turned out 500 attended (250 were initially expected), and while the goal was (I thought) to raise $50,000 for research, $90,000 was raised. How great is that!

One of Dr. Sardi's and Heat it to Beat It's goals was to raise awareness for cytoreduction surgery and HIPEC (heated intraperitoneal chemotherapy) as a proven treatment to prolong life and to potentially cure those diagnosed with cancers that have spread into the abdomen from several different primary sources including the appendix, the ovaries, colon, rectum, peritoneum and stomach. For many years, these cancers, once spread into the abdomen, have been considered terminal and untreatable, with IV chemo only used to prolong life for awhile.  When I first became a nurse, before CT, PET and MRI scans, patients had "exploratory laparotomies", abdominal surgeries to look inside their abdomens to find the problem.  When cancer was found, they were closed up, and referred to hospice when they were finally awake.  There was no attempt to treat their disease.  It was terminal.

Dr. Sardi has several long-term survivors of 10 years, 16 years etc. I met a woman on the walk who was diagnosed with advanced primary peritoneal cancer 2 1/2 years ago who is now cancer free and healthy after being treated with cytoreduction surgery and HIPEC. Her sister died of the same cancer just before she was diagnosed; she did not receive these treatments. Most of those with advanced primary peritoneal cancer survive only 3-6 months without treatment.

The sad thing is, I communicate still with many who after diagnosis are told they have no treatment options and only six months to a year to live. My goal is to convince them to self-refer to a HIPEC specialist. I know they love and trust their local doctors, but their local doctors just don't know. Much of the medical community is unaware of this treatment. Some in the medical community are vaguely aware of the procedure, but don't know much about it and think it's experimental. Many insurance companies don't see it as a "standard of care" treatment so refuse to cover it.

We all (myself included) need to be more vocal. If we have the procedure done and are doing well, we need to go back to those in the medical community who told us we were untreatable and show them that thanks to this treatment, we have survived. When we see our GPs or other doctors, we need to tell them about our procedure and survival. We need to spread the word!

My dream is that one day this will be seen as "standard of care" for our cancers. Insurance companies cover treatments that are "standard of care" for an illness. Many other cancers, like breast cancers, have a "standard of care", in a sense a recipe for treatment that is accepted by all in the medical community. If a hospital or doctor was unable to provide the accepted "standard of care" for a breast cancer patient, he or she would be obligated to send the patient to someone who was able to provide the standard of care or be legally liable for denying that care to their patient.

One cool thing, I have a stat counter on my home web site. I can see who has viewed it. I haven't checked in a really long time, but decided to look at it today. Ten medical facilities and several insurance companies viewed my www.appendix-cancer.com website just today, along with several universities. My web site is all about cytoreduction surgery and HIPEC treatments for our cancers. Maybe, just maybe, one health care facility decided to refer a patient to a HIPEC specialist. Maybe, just maybe, one insurer covered the procedure for a patient. I hope so.

But I need to "put my money where my mouth is". A surgical oncologist at large university hospital renowned for cancer treatment told me I was untreatable and terminal 9 years ago. I self-referred to a specialist and am alive 9 years later. I need to talk to him, to tell him that yes; there was treatment for me after all. That no, I didn't die, I lived to raise my kids to adulthood in spite of his predictions. There was something out there for me he didn't know about, and if he has other patients like myself, he needs to refer them to a specialist.

We all need to work towards that goal, for all who will follow us.  We need to create our own grass roots movement, to make it easier for those who will travel our path.

5 comments:

d said...

Thank you so much for posting this! Let’s try and beat this disease for good. I'm running this year!





MTHIRTY is proud to share this message on behalf of CIBC

Anonymous said...

kThank you so much for your posts. My diagnosis isn't as hopeless because of ppl like you who are informed and inform. Along those lines, do you know anyone withe goblett cell adenocarcinoid? That is my cell type and I am having HIPEC in Jan at UPMC. I would love to speak with someone who had this experience. Thanks and stay strong. Kelly

Carolyn Langlie-Lesnik RN BSN said...

Hi Kelly,

Thank you so much for your kind words.

I've known several patients diagnosed with adenocarcinoid of the appendix. Like signet ring, it is one of the rarer pathologies. I know of at least one woman who had HIPEC for adenocarcinoid who is still cancer-free 4 years later. I don't have contact info for her now, but if anyone reading this blog wants to contact Kelly, post here! We are a community and need to support each other!

Carolyn

Anonymous said...

Thanks Carolyn. If you hear of anyone, send them my way. Thanks again and I am working hard on keepine the hope.

Kelly

Anonymous said...

Hi Carolyn: I'm interested to know whether or not you've received this treatment and am not finding that here. I am forwarding this info to my gynecologist who just told me about cancer of the appendix (I've been having mysterious lower pelvic burning) and a patient who suffered from this. I'm forwarding your website info to her along with the info on the procedure which sounds very promising. Thank you and warmest wishes - Robin