I just got a phone call from Rochester cancer that my oncologist referred me to them. They are supposed to be the best in the state. it is way over on the other side of the state, a 3-hour drive and with an 80-year-old husband I am wondering how I will get there. I still get no serious response or note of caring from my family. I feel alone in this besides my husband who is trying to make small of it for his good as well as mine..My oncologist, I don't feel, has taken this whole thing seriously so I asked for the free consulation with CLL ASSOC...I think my oncologist must have just received the request for my records and whether he replies to them or not I dont know. At lesat I will be seeing and expert in thje field and a second opinion. This is what i have wanted but his phone call shook me up and brought the reality of this disese back to the forefront.
Yup, scared, nervous and going over 100 what ifs...planning the rest of my life, the whole thing.
I know I will be in the best of hands but I also know the future for T53 with 17-P deletion....not good. I would not be surprised if they don't prescribe therapy now instead of waiting.
Just a reminder I am an 11 year kidney cancer survivor and 10 year endometrial survivor. Something about this phone call made this cancer real....and butting into my life.
thank you for listening
Written by
DianeSH
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Hi Diane , Tp53 and Del 17 can be more unpredictable and in some cases shorter remissions but the landscape as changed so so much in the last 10 years so this isn't such a issue than it was before with BTK and bcl -2 inhibitors and others treatments being developed. Originally the deletions didn't respond well to the traditional chemotherapy etc
So there is a lot more treatments out there now and much more to be hopeful about
I recently became a patient of theirs for my CLL/lymphoma and breast cancer. They were great and saved me a lot of problems because of my local doctor. It was and is nice to know that someone out there has some great knowledge of what this stuff is all about. Best of luck to you. I live in central Mn. so it is a distance for me too, but so worth it!
Hi! It will be hard to drive that far so I think different clinic close home would be best. They should understand why?! All clinic do the same ( protocol is same). It’s long exhaustive commitment to travel that far. Good luck and all the best 🤞🤗
Try to break up your long journey with an overnight some place along the way. Maybe find something to see and enjoy it if you can. My friends in Florida do this when she has to go to Mayo. She said much less exhausting and they get an hotel with a pool to further relax. Best of luck. Sally🙏
my son has volunteered. I wont know if there will be repeated trips or if this is just a second opinion. More and more i am not happy with my oncologist though he has taken care of me for 11 years. I found out more from my nephrologist yesterday than my oncologist has told me. I think this one trip is good. I will be seeing experts and then decide if they will work with my oncologist or if I find another more local one.....the reality of all this is hitting me but I am much better today. Yup, I get to sit in a dental chair for 3 hours to get my lower front teeth capped. I wanted this done asap so if or when I need treatment this wont be a problem. Believe it or not I am looking forward to this appt. Then next Wed I get the caps. I have a super dentist. The last step will be my hearing aid..I can hardly wait!....I still pray for some miracle that all this is not as bad as it sounds....the cancer I mean....
If at all possible, a one night hotel trip may be worthwhile, so you are well rested to ask questions, hear/process information. Especially if it's an AM appointment. I see my specialist Monday, labs are 8am. I'm not going to try to leave at 6:30am to get there (especially with rush hour traffic) , I'm going the night before. After I see the doc, I can get breakfast, check out, & drive back.
Call Patient Services there, or the main Hem-Onc department, ask if they have agreements with any local places for rates/shuttle. I've stayed a few different places that had complementary shuttle service to the nearby large medical facilty, so no having to deal with parking. I would be surpeised if the Mayo didn't have at least a few recommendations. Sometimes the hotel themselves will offer a special rate, if you call them directly.
the appt is at 2:00 so that will give us plenty of time to get there.....Our son used to live about an hour from there so we kind of know what the ride is like.....wish I was out there now..I have no idea what they will do with me but my appointment is for an hour...
IDK if there is any way to bump up your consult. Maybe ask if you can be put on a cancellation list, sometimes they know a week or so ahead of time there is a cancellation, and if they have such a list they go down it, calling people until the cancellation is filled.
Just to reinforce your decision to go to Rochester Mayo, they have been wonderful to me.
I went there for a second opinion and now do my re-checks and testing locally. Our drive was also almost 3 hours and I did many of them in the beginning with my husband. Even in the snow. But it was really worth it.
Some people even fly to get to an expert CLL doc so I felt lucky.
thank you so much for the information. I am feeling secure that I am going to the best though also a bit scared of what they will find...I am contemplating getting a new local oncologist. i wont know how all this works out until i get to Rochester next month....in the meantime I just spent 3 hours in the dentist chair (took that as my nap time...smile) and went shopping and just got home....feeling good today. Just trying to figure out why my oncologist didn't tell me about the referral. One more point saying I need a new oncologist.
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