Hello, I recently had a 5.5 centimeter high grade pleomorphic sarcoma removed from under my sternocleidomastoid muscle at Stanford University. The tumor was removed in its full capsule with some surrounding soft tissue. All margins were declared free from tumor. The genetic testing is currently underway to determine if they can further classify my tumor but as of now it is unclassified by immunostains. They want me to undergo radiation and possibly chemo as these are standard treatments for what I had. The PET scan prior to surgery showed only localized disease. I do not want to undergo radiation or chemo because of side effects and would like to fight any microscopic disease by improving my immune system. I am doing coffee enemas which seems to help my colon rid endotoxins. I am doing a high omega 3 low omega 6 diet and restricting my sugar intake. I am juicing everyday and using essential oils, meditation, exercising-yoga, walks, light weight lifting etc. Sleeping 10 hours a day and taking medicinal mushrooms. I do not want to go through chemo and radiation at this stage right after my surgery because I feel like it will lower my immune system and its chances of fighting off any microscopic disease. The surgical margins were close and they were able to spare my nerve and artery near the tumor but the tumor was well circumscribed and remained encapsulated (as Ive said already). I am hopeful that surgery was a cure. Although I am aware of the high chance of recurrence given the high grade and size of my tumor. Do you think I can be cured by surgery alone and by doing what I can at home with diet and exercise to remain NED long term? I know that is an impossible question to answer but any advice from you would be very much appreciated. I have read your book. Thank you
Hi Alexander,
We’re really sorry you’re battling sarcoma.
It’s very positive that the tumor was encapsulated and margins are clean. However, with the high grade tumor and the usual aggressiveness of sarcomas, we would err on the side of caution and not stop with surgery.
Prognosis:
In Chp 3, we go through the importance of statistics in understanding the nature of the disease and the effectiveness (or ineffectiveness) of the treatments (surgery, radiation, chemo, etc.) After more molecular characteristics of your tumor comes back, ask your oncologist for statistics for survival rates for your cancer, if you do the prescribed treatments or if you don’t do the treatments. If he/she cannot provide you with the statistics, we recommend you look on the public journal sites for it (pubmed). This is the only way you can objectively find out how effective or ineffective the treatments are.
High volume sarcoma center:
Since sarcomas are so rare, we recommend going to a high volume sarcoma center, such as MD Anderson. Oncologists there have more experience with sarcomas, which is reflected in their treatment plans and surveillance schedule. The book details our experience with Stanford and MD Anderson.
Treatment when NED:
When I was NED, we chose to do immunotherapy to get rid of microscopic tumor. There are many more immunotherapy options for sarcoma patients in the US today -- clinical trials and off-label immunotherapies, discussed in Chp 16. Some clinical trials even treat patients when NED.
We wish you the very best.
Can you give me any specific things to look for in the genetic test that is a prognosticator? Also what is your understanding of encapsulated? There seemed to be no microscopic disease in the tissue just outside the "capsule" but I have read that this is a pseudocapsule and tumor can grow fingers outside of the capule.
We don't know what tests are being run on your tumor, but if it's the usual pathology tests, it usually is to figure out what specific kind of sarcoma you have. With that info, the oncologist has a better idea of your prognosis (by examining survival curves for that specific sarcoma) and the appropriate treatment plan. But if your oncologist does not give you survival numbers for patients with that specific sarcoma type, you'll need to search for it and make your best assessment, as was our experience in Chapter 3.
Sarcomas are well known to have microscopic tentacles that extend outside of the main visible tumor. There may be differences with certain sarcomas, but that's our general understanding. The statistics for recurrence after a "clean" surgery with negative margins for your specific cancer will tell you the likelihood of microscopic tentacles.