That's really a tough one. Survival emotions go into high gear as soon as they even suspect you have cancer and they just escalate from there. So it's hard to be objective, even though you want to find out how best to survive this monster. Here are the best sources of information in my opinion to make those tough decisions:
- Your medical/surgical team: most cancer centers will arrange an initial meeting 'with the team' to lay out their proposed treatment of your newly diagnosed cancer. At Seattle Cancer Care Alliance they actually taped the session, knowing that most patients can't remember clearly what was said because they are so upset and afraid. I strongly suggest you let them know you need time to think about their proposal and and ask how to get all your followup questions answered before proceeding.
- A second opinion: like Heidi said in her blog entry last week, it's your life! If you are not comfortable for whatever reason, go to a different cancer center until every single question you have is answered satisfactorily.
- Other patients' experiences: most cancer centers will have patient & caregiver resources out in the community and/or online communities where you can ask other patients about chemo, radiation, surgery, etc.
- Books/medical journals: libraries have a lot to offer and most cancer centers offer 'resource centers'. The downside is that by the time a book or article is published it might be out of date in the world of cancer treatment!
- Online information: be careful with this one! There is so much bad information about cancer online it is scary. I suggest you limit your searching online to information that is backed up by well conducted research.
- Surgery - most solid mass tumors will need to be removed surgically. Heidi and I have both had multiple surgeries (ouch!). Surgery for cancer isn't going to be that different from other surgeries, so isn't such a new idea to someone just diagnosed. In some cases, the surgery causes disfigurement and you want to know that before the procedure (loss of a visible body part like mastectomies, the possible need for a permanent external drain as with cystectomies, etc). In my case, I told my surgeon that no matter what he found in surgery, he was NOT allowed to remove my bladder because I wanted time to consider that extreme option and would prefer to wait.
- Radiation - many cancers, depending on the 'stage', are fought with radiation targeting the cancerous area, like in breast or prostate cancer. Radiation may also used to alleviate pain caused by cancer (cancer spread to the bone for example). Think of an ongoing, very bad sunburn during the radiation treatments.
- Chemotherapy - this area is changing all the time, with new types of chemo in research (monoclonal, combination, immunotherapy, etc). A key question to ask is about the trade-off between side effects/quality of life versus efficacy against the cancer. For example, would you really want terrible, constant nausea if a chemotherapy probably only offered 3 more months of life? Heidi's first oncologist was unsympathetic regarding side effects because it was 'saving her life'. Her current oncologist is completely different, trying to minimize side effects continually to guarantee Heidi as pleasant a daily life as possible. So she listens very carefully to what Heidi says about side effects and offers alternative chemotherapies when possible.
- Transplants - bone marrow transplants, organ transplants, stem cell transplants are all lifesavers in certain types of cancer. And they have come a long way in recent years. You'll want to ask about the pre-transplant preparation and also the kinds of medicines required afterwards to gauge the impact on your daily life.
- Experimental treatment - an advantage of going to a cancer center that is very active in research is the potential of participating in a trial or access to a promising, experimental treatment. In 2004, Heidi was able to receive a new chemo approach called 'pulse therapy' that minimized side effects. It was in research at that time and her oncologist was the main researcher.
- Alternative medicine - you will hear dozens of 'cancer cures' from well meaning friends and family. Very few of these 'cures' have invested any of their profits into proving their claims with research. Why should they? Cancer patients are desperate, right? Don't get me started.. When someone recommends something, please head to http://www.quackwatch.com/ ; if the item is not listed, drop them an email. That being said, we both do use supplements that our medical doctors have approved (some supplements can actually ruin chemotherapy efficacy - for example high dose antioxidants would have rendered Heidi's chemo useless in 2004). And Heidi has used a 'cancer naturopath' that works in conjuction with her oncologist.
Thanks again for your wonderful compassion and support!