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Wednesday, June 20, 2012

And things just got more complicated

I arrived in Houston yesterday and had a lovely afternoon and supper with my friend Paivi who now lives here.
She took me to Whole Foods so I could stock my tiny kitchenette with food. Seems the only food on the hospital grounds or near my hotel is fast food....guess that's how they stay in business, right?

I met with Dr. Pollock at MD Anderson this morning and got a very different view on my tumor.  Here are the notes I took:

This is (and here everyone agrees) a very rare tumor. Only 900 desmoid tumors are diagnosed every year as opposed to 256,000 cases of lung cancer annually. There are generally 3 locations for these tumors; mine is located in my pelvic girdle.

Doesn't that sound rather quaint and Victorian?

There are several approaches to treatment (all of which other doctors have discussed so I will not go on at length about any of them except the one he recommended).

1. Systemic therapy to include drugs like tamoxifen and sulindac. The response rate is only about 20-25% when taken alone or 30-35% when combined. 2/3 of patients have no response at all. Gleevec, which my doctor at Northwestern recommended, only has a 10% response rate. He is not recommending I go this route.

2. Standard connective tissue chemo which has an 80-85% response rate. I asked him why he recommends chemo when all of the other docs I've spoken with do not (because it is not a fast-growing tumor) and he said flatly that they are wrong in their hypothesis. That it's not a function of how fast the tumor grows, it is a function of overall responsiveness.

There is controversy over how to label desmoids. Most doctors consider it a non-malignant cancer. He does not agree based on his 30 years of working specifically on desmoids. He says there are 2 hallmarks of malignancy: one is what we typically think of when we hear cancer, that it can spread throughout the body & transform into other types of cancer. The second hallmark is: does it have the ability to invade and recur locally? If you go with that hypothesis, then yes, it is a malignant tumor.

Dr. Pollock: This is a serious and potentially destructive tumor that, if not treated properly, can have devastating effects.

This was not the best time to be sitting in that room with only my digital recorder for company. Did I mention that, for the first time in my life, my blood pressure was higher than normal?

That said, he does not recommend chemo as a first option.

3. Surgery is another option but again, not one he would recommend right now because it has the potential to be "mutilating".

4. Watch and wait but the rate of growth is unpredictable.

5. Radiation is another alternative and the one he is recommending. Typically with most cancerous tumors, you will see shrinkage and softening of the tumor after the 2nd week of radiation therapy (therapy lasts 5-6 weeks with treatments 5 days per week every day). These effects are not present with desmoids. As long as 6-12 months can pass after radiation before anything starts to happen and then it will start to shrink slowly over long periods of time. He has had patients where shrinkage has been continuous for 7-10 years. Once it has stopped shrinking then surgery is considered. Typically what is left is about 10% of the size of the original tumor.

Mine is in a tricky area to irradiate as I could sustain damage to my rectum, vagina and urethra. He strongly recommended that I seek treatment either here or Sloan-Kettering or Milan, Italy (5-6 weeks in Italy?? I can do that!!), three institutions that "understand desmoids" and can provide targeted radiation therapy thereby lessening the chances of collateral damage. That means relocating for a month and a half while I receive treatment.

The side effects are burned skin, scatter radiation to other tissues and in a very few number of patients, radiation can cause more tumors. Recurrence rate after treatment is 1 in 5 or roughly 15-20%.

This is what he is recommending with the caveat that my case has not been presented at their tumor board yet. That will take place tomorrow afternoon. In anticipation of that recommendation, though, he has set me up to meet with the radiation oncologist on Friday morning.

I asked about my pathology slides and 1. if their findings agreed with Northwesterns (they did) and 2. what additional tests were they running?  Specifically they are checking for beta-catenin markers which is a growth-signaling molecule. 85-90% of desmoids overproduce this molecule. This marker can also indicate whether it will recur. That testing will take 4 weeks to receive and he said it would not have any bearing on the course of treatment recommended right now.

I asked about diet (specifically sugar and an anti-inflammatory focus like eating more plant based foods) and he completely discounted diet as having anything to do whatsoever with this. I am still astounded by this response. I mean, seriously? How can your diet and stress levels and exercise NOT have a bearing on this? So it looks like I will be seeing Dr. Block at the integrative cancer center independently, if for nothing else than to improve my overall health so I can withstand the stress and effects of traditional treatment.

So that is that. I have a free day tomorrow so I'm planning to loll about the pool, read and nap. I don't have the energy to take the free shuttle to the Galleria (even though a pedicure and some retail therapy sounds nice).

8 comments:

Karla said...

My thoughts are with you and your family.

Lynn K said...

Amazed at the amount of information you have gathered and your ability to navigate all this.

Stay strong.

Thinking of you.

Heather H. said...

Ai ya! It's very hard when you are presented with such varying opinions. My thoughts and prayers continue to be with you. I hope you can find some clarity on which is the right path for You to follow!

((Hugs))
Heather

Jodie said...

You, my friend, are absolutely amazing. How you keep all this straight is mind boggling to me. ;) I hope you take full advantage of your "off day" tomorrow, and get some good rest. ((((hugs))))

Smitha Mathew said...

Lisa,

It sure is very challenging. When I went through with my family, after some time, my approach was to "trust every body, but not trust anybody too much". In the sense western medicine is not integrated. Each doctor does their part (you seem have teams of doctors which is great), but it is still a team who believes somethings very strongly. Very very overwhelming situation. Don't you feel like slapping a few people including me!!

In my feeling Integrative eastern medicine doctors are also skewed. For example the once who think milk is bad believe it too strongly (probably the same gene as evangelists). For example there are many who say gluten is bad and will chase you around till you are totally gluten free. But the gluten-free products have all kinds of other things that we know nothing about (and sounds deadly). Also if you remain gluten free for two long, one will become hyper-sensitive to gluten and over time you will start getting allergic to other grains too. Then you find yourself in a worse position. Our bodies need a little bit of bad things too. You always hear of the child who eat mud and never get sick!! In O's class there is a child whose hobby is to crawl under furniture and eat chewed-up bubble gum. She never gets sick while her twin gets all the regular colds (in the claim of building immunity).

From your posts I have always felt that you eat much healthier diet than 99.9% of the population in US. GREAT JOB ALREADY!! I don't agree with the current doctor that diet and exercise don't help, but be watchful of all the theories on the other side.

For example, now in the US there is a fad about coconut products. I cannot believe the kind of credits people give to coconut. I come from a place which is named "land of the coconut", and people have all the similar problems and worse. Indians eat turmeric almost every meal. Don't they have all the big problems.

Dear friend, I am not trying to complicate it. But based on my experience so far I will "trust everybody, but do not trust anybody too much".

Regards
Smitha

ashley said...

Thinking of you and your family.

Blair said...

Lisa, I've been following your blog for a while now...waiting for the right moment to contact you. I work in the communications office at MD Anderson and am here to help in any way that I can. Please know that I'm thinking about you and you are in the best possible place you could be. I'd love to come meet you, if you're up to it. If you're interested please email me at lrichardson1@mdanderson.org.

You are not alone here.

Thank you,

Lucy Richardson

Blair said...

Hi Lisa,

I've been following your blog for a while now, waiting for the right opportunity to contact you. My name is Lucy (just like your daughter :)) and I work in the communications office at MD Anderson. You are not alone here. I'd love to come meet you and introduce myself, if you're up to it. I'm thinking about you often.

My email is lrichardson1@mdanderson.org

I so wish you didn't have to go through this, but you are in the best place you could be.

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