[KartinaK1]

No stage given at myeloma diagnosis: is that common?

by KartinaK1 on Mon Jan 23, 2017 9:55 pm

My mom was diagnosed with multiple myeloma in early December. I felt so relieved when I was told recently that her myeloma was treatable. The only thing that I didn't understand was that the doctor hadn't told her what stage she was in, but considered chemotherapy when she was diagnosed in December.

I try to ask my mom as many questions so I can be as helpful as possible, but I know this is very tough on her and don't want to stress her out further.

Is it common to not know the stage when it comes to multiple myeloma and if so, why?

[wemery]

Re: No stage given at myeloma diagnosis: is that common?

by wemery on Mon Jan 23, 2017 11:15 pm

Hi KartinaK1

Same thing happened at the time of my wife's diagnosis. We asked what stage was her multiple myeloma. The doctor didn't respond to the question, shrugged it off. We were kind of taken aback, but didn't press.

Hope your Mom does well with her treatment plan. Let us know how it's going.

Best Regards,
Wayne

[DallasGG]

Re: No stage given at myeloma diagnosis: is that common?

by DallasGG on Tue Jan 24, 2017 1:06 am

I was diagnosed 3 1/2 years ago and not given a stage either.

[cdnirene]

Re: No stage given at myeloma diagnosis: is that common?

by cdnirene on Tue Jan 24, 2017 2:43 am

The responses in this forum thread might be helpful:

"What stage is my mother's multiple myeloma?" (started Apr 16, 2016)

[Myosotis]

Re: No stage given at myeloma diagnosis: is that common?

by Myosotis on Tue Jan 24, 2017 9:12 am

I was not told what stage the cancer was when I was diagnosed. When I asked why, my doctor explained they don't do that for multiple myeloma because it doesn't make much sense, and can't be used to predict the outcome, as in many other cancers. For example, even if you are told the multiple myeloma is in a very advanced stage and you are very ill at the time of diagnosis, there is still a big chance to achieve a very good response to treatment.

[Nickee]

Re: No stage given at myeloma diagnosis: is that common?

by Nickee on Mon Feb 06, 2017 2:32 am

I was diagnosed with multiple myeloma in 2010. I was not told the stage, so I asked. My doctor said it has 3 stages and I was Stage 2. So I've had 2 stem cell transplant's since then and the second one seem to do a lot of good. I'm in partial remission 2 1/2 years since my last stem cell transplant.

[Mike F]

Re: No stage given at myeloma diagnosis: is that common?

by Mike F on Mon Feb 06, 2017 2:13 pm

I was never "staged" either. I was told there's high risk, low risk, and medium risk myeloma. I was in the medium risk group. I think that is probably a more relevant way of looking at it than a stage would be.

[JBarnes]

Re: No stage given at myeloma diagnosis: is that common?

by JBarnes on Wed Feb 08, 2017 12:05 am

I, too, was not told, but a couple years later I had my records transferred and noticed that at diagnosis he had classified me as stage 2. Why he didn't tell me this, I don't know.

[torimooney]

Re: No stage given at myeloma diagnosis: is that common?

by torimooney on Thu Feb 09, 2017 1:25 am

I was not told either but looked up the staging criteria and determined I was Stage 1. My myeloma specialist said stage is not a factor for him because Stage 3 can do better than Stage 1 if the Stage 3 patient responds better to treatment than the Stage 1.

[faithoverfear]

Re: No stage given at myeloma diagnosis: is that common?

by faithoverfear on Wed May 17, 2017 11:48 am

Same here. Later, I saw a report that my doctor sent to another doctor. Yes, it did include a stage assessment. Why that information was not shared with me, I don't know. It didn't change anything.

I have found that some lab results that are given to me are far less detailed than what the doctors look at. Truthfully, I don't understand all of the medical jargon. But I would rather have the full detail report than be kept in the dark.