Medical Update

Yesterday was the doctor appointment day.

Friday April 15th is my last radiation treatment, then I go home on Saturday after cleaning up the condo with my husband Chris.

Here is what I learned

• There are only 440 people in Canada (a population of 36 million) who have sarcomas, that's how rare it is.
• They are still researching the cause.
• My radiation treatment did not shrink the tumour  - that happens with sarcomas
• The radiation did sterilize the area so when they take out the tumour if any microscopic piece is missed, it should be dead tissue and not create a new tumour.
• Radiation burns don't stop progressing after the radiation stops (bummer).  For two to three weeks after the radiation burns on my thigh get worse. (all for a good cause)
• That is why they wait for the radiation to heal before they do surgery.  Usually 4 to 6 week healing before surgery.
• If they do the surgery before the radiation heals I have a high chance of infection.
• The doctor said my surgery will be scheduled the end of May.  He told me not to worry, I won't hear until mid May as to the date.
• The biggest part of recovery is the open wound healing.  They are taking tissue the size of a large cantaloupe out of me.  I will be coming home with probably drainage tubes and home nursing wound care visiting me.
• I am in the hospital 5 to 7 days.  To get out, I have to be able to walk with a walker, use the washroom unassisted, be able to control pain through oral pain medication
• I have a 30% to 50% chance of wound healing collateral damage (basically infection)
• The doctor hopes to save 60% of my quad muscles 
• I will get a preoperative appointment with the anesthesiologist sometime in May and another MRI at Princess Margaret before the surgery at Mount Sinai
• I can do the physiotherapy in my hometown (once the wound heals)
•   For my mental goal, my  goal is to be back at work last week in August (Ideally) to first week in September.  I have a desk job, so I can hobble my way around work and do physiotherapy at the same time.  My brain still works lol.
• I am in a study (as sarcomas are so rare).  They will analyse all my tissues and I will get to do lots of questionnaires over the next 10 years.  I do believe I can help others with my experience.  
• Here is the 10 year plan:  for the next 2 years I get to go to Princess Margaret every 3 months for testing and examination.  From 3-5 years I go every 4 to 6 months.  From 5-10 years it will be once a year.  I am discharged after 10 years.

so that's the update

The doctor said the most frustrating thing in the short term is waiting for the surgery date, as they really book it just before the surgery, so I could only have a couple of days notice.  Guess that beats worrying until the date :)

For visual my tumour is in the Vastus Medialis which I find interesting.