What about asking either your surgeon or your PCP to write a note to the oncologist, politely asking her to reconsider her policy because of your extraordinary circumstances, i.e., your inability to travel far for treatment because you are taking care of your husband, who has dementia?
About a year after my husband was diagnosed, I learned I had breast cancer. Six months after surgery and radiation, my oncologist put me on a new but highly effective anti-estrogen drug that was known to have severe side effects (including bone pain), which I began to suffer from almost immediately. Between that and taking care of my husband, I could barely function. At my next annual check-up, my PCP saw what a wreck I was and wrote a letter to the oncologist asking her to reconsider the drug because it was compromising my overall health. She switched the drug.
If you can’t get your surgeon or PCP to do this, you could write a letter yourself. These guys seem not to take anything seriously unless it’s in writing.
I heard today that the doctor in Seattle agreed to take my case. I really do not want to drive that far. I did send my doctor an email why he doesn't use one of the oncologist that Kadlec has but maybe it is because they deal with many different cancers, not just gynecological.
Glad that oncologist took your case. How long of a drive is it for you? Will you have to stay overnight, and if so, do you have someone to stay with Art? When will you go - I know how hard it is waiting to see what treatment the oncologist will suggest. Sending all good wishes your way.
Last week I was told the dr in Spokane refused the referral so I sent her an email. Today I heard from her office. According to the lady the doctor did not refuse it. She looked over everything and said there was no need for further treatment. All was gotten in the surgery. She said the doctor has been trying to contact my doctor but they have been playing phone tag.
I called my doctor's office and told his nurse what I was told by the oncologist office. And that she was trying to get a hold of him. He was in surgery all day today so will tell him tomorrow. I hope that is the story because I really do not want to drive the 250 miles to Seattle. It would have to be a day trip - a lot of driving for one day and since Art will be with me a long day for him.
Oh Charlotte, I am crying tears of joy. I hope and pray that this is the end of your fears. I will keep you in my thoughts and prayers. I hope you are able to breath a little easier now. (((Hugs)))
After talking to a couple people who went and talk to my doctor, he will talk to me at my post-op checkup the 30th. The lady from the referral office who talked with him was shocked he knew when I was coming back in. I told her probably cause he had talked today with his nurse about the message I left him yesterday. So hopefully he will talk with the oncologist in Spokane and then we go from there. Yes, it is a relief when I heard from the oncologist nurse that there was nothing more to do. I assume that means it was all contained in the uterus.
I can't say enough about the website www.hystersisters.com. They are much like here for dementia. A lot of information and support
Charlotte, Just read the great news. It is about time something came up smelling like roses for you. Keep resting as much as possible until you are fully mended. Have another piece of chocolate - you deserve a celebration.
My body seems to be taking a turn. The urine output has not been what it was - until last night. It was so nice to be sleeping 6 hours without getting up to pee. Last night I was up every hour and really needed to. Maybe this indicates the internal swelling is going down. I really do not hurt much - just get tired. I go tomorrow to find out how he thinks I am doing and hopefully to find out all the nitty gritty of what he found. For some reason the next morning when he came to check on me for release, I did not. Question like: did the adhesion have the bladder and uterus attached to each other? or attached to the bowels? I guess that is common.
I also feel fortunate that I have not had many of the problems other women have that I read about on the hystersister website. Maybe it is because I am 'old' (compared to most of them) and this was for cancer, not other reasons. So many young women having to have hysterectomies due to fibroids or endometrious. So many problems they have in the healing process. So many emotions they have regarding loosing their female parts. Some because they will never have a child or more children, others because they equate their uterus to their femininity.
Charlotte, you endure so much on a daily basis so what would pain be to you? What you have been through would probably have knocked over anyone else, I have always admired your strength and courage! Hope that you are satisfied with tomorrows' appointment.
Glad I did not have to decide on a treatment. After he was diagnosed I would pray for cancer of something that would take my life. If I was found to be terminal without treatment I would refuse so I could die and not have to go through this anymore. A couple years ago I did say to myself I would do surgery - if I had insurance - no further treatment. After a year of bleeding and preparing my mind for the worst, I qualified for Medicaid. I had the surgery and thankfully did not have to decide whether to do further treatment except to wait and watch.
Hi Charlotte, It must have been awful to know you were sick and to have to wait to hear if you qualified for Medicaid. No one should have to bear that kind of stress, especially when they are taking care of a spouse with dementia. I am so glad you were covered and were able to get the surgery and with a good result, too. But just because it worked out in the end does not mean the experience did not take its toll.
I can see why you thought cancer might make the decision for you. Although I did not want to be told I was terminal, the main reason was that I did not know who would take care of my husband if I were dead. I think the experience of taking care of our spouses leaves us without the will to deal with anything else, including our own medical battles. We are all born with a survival instinct but sometimes we get so beaten down that it’s not much use to us anymore. We get so tired. Hang in there . . . .