Tuesday, April 23, 2013

I have cancer

I had my total abdominal hysterectomy on April 11. After the surgery my oncologist surgeon told me everything looked good. She was sure I didn't have cancer. Since there was less than 1% chance that my fibroid was cancerous I felt confident that everything was good.

The surgery went well, although the pain after the surgery was hideous. I have a six inch vertical cut from my belly button down to right above my pelvic bone. It's not pretty but it was necessary to remove my uterus and the fibroid intact.

When I came out of the recovery room my three best friends were there waiting for me. I'm really lucky to have such great friends that care for me. I don't know how I'd get through this without them.

My body parts, uterus, fibroid, cervix and one ovary (one was left inside of me) were all sent to the lab to be biopsied. On April 17th I received a phone call from my surgeon's associate (my doctor was on vacation) that I have Uterine Leiomyosarcoma. She told me it was an extremely rare and aggressive cancer. The conversation was short since I had a followup visit with my surgeon on April 24.

After researching Uterine Leimyosarcoma (ULMS) online, I was very upset. This isn't the good uterine cancer, the one with a 90% five-year survival rate. This one is different. It's so rare that there isn't much known about it. It affects six in one million women.

I called my doctor's associate back last Thursday and asked several questions. I'm in Stage 1B which sounds good, but even at this stage it only has a 50% five-year survival rate. Those aren't very good odds. Also, the larger the tumor is over 5 cm (mine was 12 cm) the more likely it will reoccur even if all of it was removed during surgery. I'm thankful I'm not in Stage II since that stage only has a survival rate of 0 - 20%.

I stumbled across a blog by a woman that was diagnosed four and half years ago with Stage II ULMS. She's still going strong, but she had to completely change her life. From removing stress factors to changing her diet to all organic, natural foods and no sugar. Cancer feeds off of sugar.

Cancer also feeds off of estrogen, which is why I have to have my second ovary removed as soon as possible. Even though I'm postmenopausal it's still producing a minute amount of estrogen.

Fat also produces estrogen, so I'm on a diet. Not a crazy, starve myself type of diet, but a whole foods, healthy diet.

Other than the cancer, the criminal trial is on schedule for June 11 and the divorce in November. Very stressful events that I'm trying to handle without making myself crazy. I can't wait for this to all be over.

I will fight this cancer as hard as I can, and I'll do the best to change my life. It's not going to be easy, but it'll be worth it.


Jane Cartelli said...

I am so sorry. Stay strong in your recovery plans. I will pray for you.

ABBY said...

Have been waiting for an update on your condition since your last posting. I am so very sorry to hear about your diagnosis. Will continue to keep you in my prayers.

ABBY said...

I just read this:

Do I [Really] Have LMS?
"Right now, I'm having a day-to-day battle with my brain. I have cancer...do I really have cancer? Oh yes, that's right, I have cancer. What do I do now?." [Erica]

"Are you sure I have cancer" is pertinent, a lulu, and gets right to the heart of the matter. An even better question is "Are you sure I have leiomyosarcoma?". Leiomyosarcomas are difficult to treat, it might be a different cancer, one that is easier to treat.

Leiomyosarcoma is extremely rare. Some pathologists may never have seen one before. There are, however, pathologists who have a major interest in sarcomas, and who review them all the time. Your tumor tissue should be examined by a sarcoma pathologist for confirmation.

And because leiomyosarcomas are rare, difficult to treat, and don't react even like other sarcomas, it would be best to go to an oncologist [cancer doctor] who has a major interest in sarcomas, and treats a lot of patients with them. We call these doctors, informally, sarcoma oncologists. They usually practice at a sarcoma center, or a cancer center of some kind.

Sarcoma oncologists recognize that leiomyosarcomas do not respond to some treatments that other sarcomas do respond to. Where a general oncologist might treat you just like any other soft-tissue sarcoma, there are some situations where the treatments may not give any proven benefit, and do give damage. There are also some situations where there have been new developments which are very exciting, but require the tumors to be tested.

One of these situations is adjuvant treatment of a truncal LMS that has been removed with clear margins. Another is the development of STI-571, a new designer drug, which works phenomenally well in clinical trials on GIST LMS. We will discuss these further on.

The "Doctors" section can help you with finding a sarcoma specialist, so can the LMS List at ACOR.org. See the section on Resources.

After choosing him/her, you might call up the sarcoma oncologist's office and make a tentative appointment. Make a list of what is required....tissue samples, addresses, reports, referrals.

Go to your primary doctor. State to him/her: I have a rare cancer. I have heard that this doctor [the sarcoma oncologist] treats a lot of these particular types of rare cancers. I would like a referral to this doctor for decisions about treatment and management of my condition. [You are entitled to a second medical opinion by an expert. See Patients. Rights section.]

Now if you live pretty far from the sarcoma oncologist, the sarcoma oncologist might be making decisions for treatment with you, that your oncologist nearer home will be carrying out.

Go to your general oncologist [if you have been referred to one] and state: The sarcoma oncologist treats a lot of leiomyosarcomas. I am being referred to him for second opinions on treatment options. Do you have any objections to this? Would you be willing to carry out some treatments recommended by the sarcoma oncologist, here, nearer my home, if it were possible?

You can also see another sarcoma oncologist, should things not jell well with the one you are seeing. Your choice of doctors is very important. And you can change doctors if you think that your needs would be better met by another doctor. We would especially recommend that you change doctors if your doctor is not interested, encouraging, helpful and hopeful.

I hope it helps.

Karen said...

Woman, it seems you can not catch a break. I hope the next surgery goes well and treatment will be effective.


Heather said...

Wow. That's a shock! I'm sorry you're having to go through all of these stressful events at the same time! Glad you have friends supporting you, though and I hope they will continue to surround you with love and kindness. Being sick is so hard and it's even harder when you don't have a significant other. Hugs and God bless!

Sarah G said...


Theresa said...

I will pray for you.

Michelle said...

Diana, I've been reading your blog for a long time and have always been impressed by your grace under pressure. My family has experienced leiomyosarcoma. I hope you will follow your doctors' treatment advice, but balance it with living your life to the fullest.

You are an amazing woman!

bbubblyb said...

I'm so sorry Diana, wish I could give you a big hug. I'm glad you have your friends too. I'm here too if you need me. I'll be praying for you.

Marie said...

I am very sorry you are going through this and will pray for you.

Lyn said...

Oh Diana I am just shocked... and so sorry you are dealing with this. You are a STRONG woman, you have always been a fighter. You are stronger than you know. You will beat this. Hugs. I am praying for you.

Ida said...

Words fail me. Just know that, besides myself, lots of people are holding you up in prayer. Stay strong, and fight this. Sending hugs, prayers and lots of good vibes your way.

Deniz said...

I'm not generally the praying kind, but I'll just have to make an exception for you Diana, just in case someone up there is listening.
I can't express how sad, and angry!, it makes me feel that, after all you have gone through already and are still going through, you now have this horrible thing to deal with.
Every positive vibe is headed your way from the UK, wrapped in the biggest, fluffiest Zen hug I can manage.

june said...

Dear Diana - I cannot find the words to express how saddened and shocked I am by this news. I honestly thought and truly believed that everything would be okay...that YOU would be okay and that the once the fibroid was removed, all would be well.

I admire your bravery, your courage, your strength in the face of this, Diana. I am sending you prayers of healing and well-being. We are all, collectively, praying for you. Although we live thousands of miles apart, I am with you in spirit, with love and support. Please know that you have friends, and you have love and positive energy all around you in those friends who care and love you.

june said...

Dear Diana, I am at a complete loss for words in expressing how saddened and how shocked I am by this awful news.

My heart goes out to you, dear Diana. I am praying for you, as we all are. Know that you have friends all over the world through this blog, and we are all collectively sending you love, support and healing energy from us to you.

ps - my first comment left for you didn't go through, for some reason...

Diandra said...

So sorry to hear about the biopsy results. But you are doing the right thing, looking at all this as a challenge (and one you can totally rock) instead of the final death blow dealt out by fate. Don't let the statistics play mind games on you. I wish you all the best!

Roxie said...

I can't imagine the shock you must feel over this news. I am so sorry, Diana. What is the recommended course of treatment? Thinking of you, Hugs, Roxie

Anna Down Under said...

I'm so sorry to hear the news. But I know you'll focus on your health now, above all else cuz it's all any of us really have. You can win this battle, and my prayers are with you.

Carrieheff said...

I am so sorry to hear your diagnosis. I have in the past and will continue to pray for you since that is really all I can do from so far away. I have enjoyed reading your blog for a long time now and know that you are a strong woman who is a fighter and if anyone can beat this, YOU CAN!

Elaine said...

So sorry to hear this. On top of everything else you've gone through recently! Sending positive thoughts your way.

PJ Geek said...

hugs and prayers

Valerie said...

I'm so sorry to hear this. I will be praying for you and know you will do everything in your power to fight this! I'm local and I know we don't know each other, but please reach out if there's anything I can do.