I arrived in Houston yesterday and had a lovely afternoon and supper with my friend Paivi who now lives here.
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).