You know your parents better than anyone. For many adult children of patients, it's hard to decide if you should intervene or let them handle it in their own way. Trusting a single doctor with your health care and asking no questions is an old-fashioned notion, but that attitude persists, and when people insist you may have to respect their decision.
Personally, I believe that patients do best when they ask questions, understand for themselves what's going on, and are ready to be a partner with the people treating them.
If you want to push harder for her to see an MDS expert, I can make some suggestions. Perhaps some of them will suit you:
* Accept that your parents are probably scared. Understand that not talking about it can be a coping mechanism. Tell them that you are scared too, but you are learning what can be done and want them to let you help.
* If you are aren't 100% sure she wouldn't consider seeking a second opinion, bring it up again. Tell her how important it is and see if you can talk her into it.
* Talk separately to your father and spell out the facts.
* Get the brochures from AAMAC and share them with your parents. If a descriptions of MDS and its treatment options is sitting on their coffee table, I bet they'll read it and learn from it.
* Talk to your mom about her "being referred to a specialist" rather than "getting a second opinion." Some patients feel it shows a lack of trust in their physician to get a second opinion, even though a good physician should understand it's best for the patient and even welcome the chance for confirmation.
* Find out exactly who you would consult ahead of time. Depending on where you are in Canada, you'd probably prefer someone local, but the best MDS treatment centers I know of are in the Toronto area: the
Sunnybrook Health Sciences Centre and
Princess Margaret Hospital. Then, rather than ask her about the idea of seeing a specialist, tell her the details: the name of the doctor she will see, where and when.
* Talk to your mom's doctor yourself. If you need permission from her before the doctor will speak to you, get the necessary forms and ask your mom to fill them out. You could talk to the doctor about her condition, ask for test results, ask if he objects to your mom getting a second opinion, or ask if he'd be willing to consult a specialist.
* Get a copy of you mom's test results (blood counts, maybe even the bone marrow biopsy results). Ask her doctor or another doctor to explain what they mean, or let Marrowforums members help you understand what they are measuring.
* Offer your mom a chance to talk to other patients by phone. Hearing a friendly voice from someone facing the same thing can be very helpful, especially with a patient who may not know what to think, what to ask, or what to do. The AAMAC has a peer-to-peer support network of volunteers for this, and they can find someone for your mom to talk to. The AA&MDSIF can do this as well with their own
Global Support Network of volunteers. Canadian volunteers would presumably know more about the Canadian health care system, so they might your first choice.
* If it isn't too far for you and your parents to travel (or just you alone), take a "vacation" to attend the
AA&MDSIF 2008 Patient & Family Conference in Washington on July 27-29. You can find the full schedule
here. At the conference, you or your mom can seek out other MDS patients, including Canadians, and get medical information directly from experts (only general questions and answers though, not the same as an individual appointment and full consultation).
* Check if there are local programs or support groups, perhaps at a hospital in your area, to help newly diagnosed patients like your mom.