I am frustrated with what I feel are harmful delays to Ron's treatment. The first surgery in 2005 was quick. He got his diagnosis on July 21 and was in surgery on August 3. He then had his Port and Peg placed on September 2 and within 10 days started his IMRT and Chemo regimen. Then his first recurrence happened in July of 08. He was diagnosed by visualization by his first surgeon on August 13. He then waited until September 30 to have his salvage surgery. Now his third cancer. He had a routine PET scan November 11, which lit up in 4 areas of his mouth and neck. Some of his doctors thought the PET was too soon, but it turned out to be accurate. He does have a large cancer in the floor of mouth, wrapping around the side of his tongue. During this time, the doctors kept changing their minds about what should be done. His MO wanted to start Erbitux right away, so we made an appointment for Port placement. Then we saw him a week later and the tumor board had met and discussed Ron and they decided that he needed another surgery. So we were told to "sit tight" on chemo. So it is now January, and nothing has been done. We do have a surgery date for February 2, but my question is, is this kind of wait normal for active cancers?? It just seems to me that we are just letting it grow larger and larger. There is Perineral Invasion, which actually accelerates the spread of tumor. Anyone have any thoughts on this or is this fairly normal?
Lori

Hi, Lori,

I think that delays are common and I know it took 40 long days for my husband's treatment to begin after diagnosis. But a good part of the delay in our case was getting the medical, radiation and ENT oncologists all to meet with us (delayed due to conferences, vacations of them) and to go to the tumor board, make the radiation mask, etc. But- your husband has a much more urgent situation than most people who are dealing with their first treatment and in those cases it makes sense that part of the wait is due to diagnosis and making treatment plans. In your husband's case, is there any medical reason for the delay? If not, I would be persistent in doing everything I could to move the surgery up. People often cancel (or have to cancel) surgery and I would be on the surgeon to take any spot that opened up. I would enlist the help of anyone who might be able to help. The seriousness of his situation and the stress that the two of you have endured makes an this wait unbearable. I am so sorry you have to go through this as I found the wait to begin treatment one of the most difficult times of my life.

Sophie

Lori

I jumped up and down and screamed at how long it was taking to get my surgery also. I was diagnosed June 8 and they did not do surgery until Sept 25. I did have 2 rounds of chemo 3 weeks apart during the waiting time though. My oncologist told me that it took a lot to put this type of surgery together and that was why it was taking so long. The surgery was over 18 hours and at one point they talked of doing it during the middle of the night to get the operating room.

I would ask the surgeons why and express your concerns and desire to have it sooner rather than later. Ron is fortunate to have you to do this type of talking and questioning for him. I am by myself and by Labor Day I had reached the point where I felt so awful I did not have the energy to jump up and down and scream any more.

Patty

Where are you being treated? This seems unreasonable by any standards.

Not sure if you are asking Lori or me Brian

I was treated at the SIU/St Johns Cancer Institute. I don't think that the outcome would have been any different for me. The tumor was very large to start with and took on a life of it's own with chemo.

Patty

Hello all,
Thanks for replying. Brian, Ron is now going to UW-Madison. The ENT surgeon called him and said that since Ron will be his only patient on surgery day, it would not be until Feb. 2. His first surgery was local, by a local ENT surgeon. Maybe being a small hospital, it was much easier to schedule.
His second surgery was done at St. Luke's in Milwaukee, by an ENT surgeon and a Plastic surgeon. I think the delay there was because they both had to get their schedules together to do the surgery.
I do understand how difficult it is for large cancer centers to treat everyone as quickly as we would like to be treated, it is just upsetting thinking that the cancer is just in there growing away. I guess I'm just frustrated that since this is Ron's second tumor within 6 months, I want things done yesterday!!
I think I will call UW this week and ask them to let us know if there is a cancellation before Feb. 2.
Hanging on (just barely),
Lori