I finally received my pathology report yesterday evening from the tumor and margins that were removed on Nov. 3rd. The lung resection margin is tumor free, the lymph nodes are benign, and the tumor "is confined within its capsule."
I could not have hoped for better news and am feeling extremely lucky. My next step it to meet with a radiologist on Dec. 7th to discuss radiation therapy. I had pretty much already decided not to take any chemotherapy
unless I could be absolutely convinced that it would be beneficial, and I kind of feel the same way about radiation. I am not sure if radiation therapy focused on my already compromised half lung is the best course of action in my case. I'm leaning more towards diet and nutrition to help prevent any cancer cells from taking hold again.
Any thoughts would be greatly appreciated.
- Why do they advise radiation therapy if the margins are clear? Are the margins too small? Ask the radiologist for an explanation then decide weighting all possibilities. Ask yourself whether you will regret your decision in case of a recurrence. Once you make your decision, no matter what happens, you should not look back...
Hi Luke, we are in BC too in the interior - my son is an SS survivor so we have spent a lot of time at BCCA. Our story is different but we spent a lot of time not knowing what was wrong but being told it was benign, and then - get the ultimate in bad news. It is a very rare cancer and it presents so differently that it is just nto on the radar for a lot of physicians. That is great news about your pathology and what a relief. I echo what Elodie says - educate yourself as much as you can about the radiation and why they are reccomending it if they do and then decide. Know then that you made the right decision and do not look back.
Have you looked at Inspire Health in Vancouver? They did not have programs for kids so we could not use it, but we heard lots of good things about it. It does have free programs dealing with nutrition and wellnes for cancer patients, and some other things covered by MSP. http://www.inspirehealth.ca/
What I will say about radiation - it is my understanding that since they did not know it was a sarcoma when they removed your tumor they would want it to be assessed by a radiation specialist no matter what. There is a fantastic sarcoma team in Vancouver who meet regularly to review sarcoma cases, Dr. Nielsen who Elodie mentioned is part of that team as well as doctors across the lower mainland & in Kelowna too. The team has pathologists, surgeons, oncologist & radiation oncologists (http://www.bccancer.bc.ca/HPI/CancerManagementGuidelines/MusculoskeletalandSarcoma/Management/Referral+Info.htm). My assumption is that they would have discussed your case but you should ask. You can also fill out forms at BCCA to get copies of all your medical reports. My son had radiation at BCCA after a biopsy & before his surgery. If you even need to talk about anything we are here! I am hoping for good things for you, I am sorry you had to find the site but learning about what others have been through is powerful and there are a lot of hopeful stories here.
Thanks so much for the advice. I am waiting to make a final decision based on what the radiologist has to say when I meet with her on December 7th. I agree that what ever decision is finally made there should be no looking back.
BB, I really appreciate you recommending InspireHealth. We actually were told about it by a friend and went to a "fireside chat" there the day before you replied to this discussion. They seem like a great organisation and I hope anyone with a cancer diagnosis in the lower mainland finds out about them. I hope they could a least make some good recommendations for your son. I wish your family all the best. If you guys ever need anything whenever you have to visit Vancouver please don't hesitate to ask.
BB said:
Hi Luke, we are in BC too in the interior - my son is an SS survivor so we have spent a lot of time at BCCA. Our story is different but we spent a lot of time not knowing what was wrong but being told it was benign, and then - get the ultimate in bad news. It is a very rare cancer and it presents so differently that it is just nto on the radar for a lot of physicians. That is great news about your pathology and what a relief. I echo what Elodie says - educate yourself as much as you can about the radiation and why they are reccomending it if they do and then decide. Know then that you made the right decision and do not look back.
Have you looked at Inspire Health in Vancouver? They did not have programs for kids so we could not use it, but we heard lots of good things about it. It does have free programs dealing with nutrition and wellnes for cancer patients, and some other things covered by MSP. http://www.inspirehealth.ca/
What I will say about radiation - it is my understanding that since they did not know it was a sarcoma when they removed your tumor they would want it to be assessed by a radiation specialist no matter what. There is a fantastic sarcoma team in Vancouver who meet regularly to review sarcoma cases, Dr. Nielsen who Elodie mentioned is part of that team as well as doctors across the lower mainland & in Kelowna too. The team has pathologists, surgeons, oncologist & radiation oncologists (http://www.bccancer.bc.ca/HPI/CancerManagementGuidelines/Musculoske...). My assumption is that they would have discussed your case but you should ask. You can also fill out forms at BCCA to get copies of all your medical reports. My son had radiation at BCCA after a biopsy & before his surgery. If you even need to talk about anything we are here! I am hoping for good things for you, I am sorry you had to find the site but learning about what others have been through is powerful and there are a lot of hopeful stories here.