[Sarah123]

How to change your oncologist?

by Sarah123 on Thu Mar 03, 2016 6:33 pm

I have been followed by the same oncologist/ hematologist for 16 years. This followed a period of time in which I was told I had a brain tumor, lymphoma, and then Waldenstrom's. After no diagnosis, and I was able to walk with a walker and then a cane, and then got to the point that I was active and healthy and my IgM numbers went down, I was told I had MGUS, with 10% bone marrow involvement.

Fast forward 16 years, and I'm doing strength training, aerobics, zumba, gardening, etc. All of a sudden, in a 10-month period, I have

• 3 spinal compression fractures and lose 2 inches in height
• 2 serious bouts of bronchitis
• 2 serious UTIs
• My 3rd case of shingles (severe)
• A recurrence of basal skin cancer, and one more yet to be biopsied
• A complete breakdown of my digestive system with small intestinal bacterial overgrowth secondary to "a twist or a kink" in my colon"

My endocrinologist referred me to my oncologist to rule out IgM multiple myeloma, which I explained is very rare as IgM, if it progresses, is more likely to go to Waldenstrom's.

My oncologist was offended that he was being asked to rule out myeloma, and kept saying "You don't have multiple myeloma. Why do you want to think you have multiple myeloma?"

I repeatedly explained to him that I don't want to have anything, I just want a diagnosis. He replied "You have osteoporosis; it's not my problem." (My t-score is -2.3 which is actually osteopenia.) He then sent me an email ALL IN CAPITAL LETTERS which said YOUR BONE MARROW IS NORMAL and didn't address if FISH testing or chromosomal analysis had been done or not, and failed to explain what happened to the 10% bone marrow involvement.

He said he would help me obtain a second opinion, but when I attempted to do so he said he meant only within the HMO. Anything outside, I would pay for.

Which brings me to my problem. I realize that it's time to change oncologists, but this is difficult.

How do I know the next one will be any better? Has anyone ever had to change oncologists before?

[Multibilly]

Re: How to change your oncologist?

by Multibilly on Thu Mar 03, 2016 8:14 pm

Sarah,

I think a lot of patients unnecessarily agonize over the emotions of this kind of move.

If you are at all concerned about how your current onc will feel if you leave his/her practice, don't be. Doctors are used to patients moving on and/or getting second opinions. I met with 3 oncs before I found the one that I felt was right for me when I first was diagnosed.

As far as knowing whether another onc will be better than your current onc, I would suggest using this forum to get some specific recommendations for multiple myeloma specialists. If you let us know what city you are in, folks on this forum can likely suggest some specific doctors or institutions.

[torimooney]

Re: How to change your oncologist?

by torimooney on Fri Mar 04, 2016 4:13 am

I had a local oncologist referred to me by my multiple myeloma specialist, who is 2 hours. away. I treated with this local doc for 4 months and was very dissatisfied with his bedside manner. I had a heart-to-heart discussion with him as to why I was dissatisfied.. He said he would try to meet my needs. However, on my very next encounter with him, it was apparent he was not able to change his manner. At that point, I went to the oncologist of a friend who I had met years earlier. We had a discussion of what I was looking for in an oncologist and he felt we could work together and he would work with my specialist. It is nearly 4 years later and the three of us are a great team. It is vital to have an oncologist that you can work with. I am not with an HMO, so I didn't have that problem.. Try to find a multiple myeloma support group in your area to meet others who may know of other oncologists in your HMO that they are happy with. Good luck.

[blueblood]

Re: How to change your oncologist?

by blueblood on Fri Mar 04, 2016 7:25 am

Hi Sarah:

My first suggestion is to try a preventative medicine for shingles. I talk acyclovir daily. It may be helpful in your situation too.

It appears you have already made the decision to jettison your current oncologist. Your question really becomes, 'How do I find a good oncologist?', I would have to second Torimooney's suggestion of asking a local support group for suggestions. I happen to already have been friends with one who directed me to the myeloma clinic.

Good Luck. Rapport with your physicians is very important.

[dogmom]

Re: How to change your oncologist?

by dogmom on Sun Mar 06, 2016 11:31 am

You should never feel bad about wanting a second opinion or to change MDs. It is you right and if your current MD has a problem with it or acts offended ... well, there is your answer in my opinion.

Hope all goes well for you.

[SlimMoe]

Re: How to change your oncologist?

by SlimMoe on Sun Mar 06, 2016 11:32 pm

From another thread I see you are with Kaiser. Since multiple myeloma is very rare, what is Kaiser's policy about going outside to a specialist? If they don't have the in-house knowledge, you should be able to go elsewhere.

Also, do you have access to your medical chart online to see what tests they have performed? Your onc's communication skills are just wrong. All caps, really! I would forward that e-mail to the director / head of the department and maybe get a conversation going about your concerns not being adequately addressed.

This didn't really answer your questions. Sorry, those where the thoughts I had when reading your post.

[Grizlump]

Re: How to change your oncologist?

by Grizlump on Mon Mar 07, 2016 12:33 pm

Sarah,

I hate to think I may someday lie on my deathbed saying, "At least I didn't hurt the doctor's feelings". They can get another patient, can you get another life?

It sounds like your problem is the doctor. My problems have usually been caused by the DeVry graduates who think they know something I don't.

You know the type, her husband is fooling around with the neighbor, her kids stay out past midnight, her dog won't come when she calls it, but – when she gets behind that sliding glass partition, she has some authority by golly!! She should have stayed in beauty school.

Charlie