Undiagnosed brain tumor in cerebellum (possible primary lymphoma)

Wylie Eden

Good evening to everyone,

Before I tell my father's story, I'd first like to thank everyone that posts on this website for sharing your stories of hope, and courage. The knowledge that I have gleaned from reading people's first hand accounts of their fight, or those of their loved ones, has been invalauble to me.

My 73-year-old father recently was diagnosed with a 5cm tumor deep in his cerebellum. 

The nuero-surgeon at our hosptial in central British Columbia Canada, has said that surgery is not an option, and he has refused to do a biopsy.  Another nuero-surgeon agrees that, in our town, at least, the technology to do the biopsy is not available.

He was treated with DX, which has improved his symptoms, but after 6 days the tumor shrank only marginally on the follow up MRI.

Both neuro-surgeons and a nuerologist have said they suspect the tumor is primary CNS lymphoma, however, the oncologist and the nuero-radiologist say they do not have enough evidence to treat it with chemo based on the limited amount of information they have because the MRI is inconclusive. We do know that the tumor is primary.

 

So that leaves us in a rock and a hard place where nuero-surgeons refuse to do a biopsy and onconolgy refuses to treat unless there is a biopsy. 

 

There has been talk they might send him to Vancouver where they have access to more controlled biopsies, but I am starting to sense that they are pulling back from that promise and I don't sense nearly as much fight in our medical team as I do in my father. The long and short of it is, they have no plan and don't seem to be in any hurry to come up with one. 

 

I guess my question here is if we have lost faith in our medical team, and beleive they are engaging in managed care due to my father's age (something they have hinted at since the start), what would be a good next move for us? Where would people reccomend we send his MRIs for second opinions, and or where should we send him for private treatment in the United States or Canada or elesewhere?

 

My father is very healthy otherwise, and picked 120,000 pounds of apples just 4 months ago. He's also not wanting sit by without trying. 

 

Any insights would be helpful. 

 

regards,

and best wishes to everyone who reads this with your own battles,

 

 

 

 

 

Sten

They should be able to treat it as primary CNS lymphoma

Hi Wylie,

I too was diagnosed with primary CNS lymphoma (PCNSL) in my cerebellum in March 2012. They could not do a biopsy, which is most often too risky in the cerebellum, as far as I understand, but they said that they were 99% sure about the diagnosis and treated me successfully for PCNSL. The did an X-ray of my chest and belly, and they found that my CNS lymphoma was primary (no cancer in chest or belly).

I am lucky to live in Stockholm, Sweden, which has the most competent cancer specialists of the country. 

If you have questions to me about this, you are welcome to send me a private message.

Good luck!

Sten

Wylie Eden

Sten said:

They should be able to treat it as primary CNS lymphoma

Hi Wylie,

I too was diagnosed with primary CNS lymphoma (PCNSL) in my cerebellum in March 2012. They could not do a biopsy, which is most often too risky in the cerebellum, as far as I understand, but they said that they were 99% sure about the diagnosis and treated me successfully for PCNSL. The did an X-ray of my chest and belly, and they found that my CNS lymphoma was primary (no cancer in chest or belly).

I am lucky to live in Stockholm, Sweden, which has the most competent cancer specialists of the country. 

If you have questions to me about this, you are welcome to send me a private message.

Good luck!

Sten

Thanks Sten

Thanks for your response Sten,

they actually told us they were planning to treat as primary CNS lymphoma, but the oncologists refused.

They have told us that it could also be medulloblastoma, which as far as I understand rarely presents in people over 60. The nuero radiologists say they just are not sure, but the nuero surgeons seemed to agree it was PCNSL. I think the fact the 6 days of decadron shrank the tumor only marginally also factored into the decision not to treat.

Sten, did they make your diagnosis specifically from an MRI? Or were other diagnostic tools used? 

thanks again, and continued good health to you!

 

 

 

 

Mary N.

Wylie Eden said:

Thanks Sten

Thanks for your response Sten,

they actually told us they were planning to treat as primary CNS lymphoma, but the oncologists refused.

They have told us that it could also be medulloblastoma, which as far as I understand rarely presents in people over 60. The nuero radiologists say they just are not sure, but the nuero surgeons seemed to agree it was PCNSL. I think the fact the 6 days of decadron shrank the tumor only marginally also factored into the decision not to treat.

Sten, did they make your diagnosis specifically from an MRI? Or were other diagnostic tools used? 

thanks again, and continued good health to you!

 

 

 

 

cns

Wylie, I also had or have primary cns nhl.  They did indeed do a biopsy but the decadron in six days did not do much shrinking, it took a bit longer.  I was 70 when I was diagnosed and it has been over 5 years.  I would advise you to get another opinion.  I would advise you to try to find a place that specializes in lynphoma.  I'm not sure about what is available in Canada. I guess that I was fortunate that one of the tumors I had was in a place that could be biopsied.  I had no idea I was getting sick and was working up until the day I had a seizure. Best of luck to you and your dad. They did a PET scan to check if I had it any other place but it was only in my brain.

Wylie Eden

Mary N. said:

cns

Wylie, I also had or have primary cns nhl.  They did indeed do a biopsy but the decadron in six days did not do much shrinking, it took a bit longer.  I was 70 when I was diagnosed and it has been over 5 years.  I would advise you to get another opinion.  I would advise you to try to find a place that specializes in lynphoma.  I'm not sure about what is available in Canada. I guess that I was fortunate that one of the tumors I had was in a place that could be biopsied.  I had no idea I was getting sick and was working up until the day I had a seizure. Best of luck to you and your dad. They did a PET scan to check if I had it any other place but it was only in my brain.

Thanks Mary,
continued good

Thanks Mary,

continued good health to you...

Regarding my dad, they sent his MRI to a neuro-surgeon/nuero radiologist (a rare breed to specialize in both). He broke the stalemate and said he felt it is lymphoma.

We now have a bit of a wait (three weeks) plus before chemo,

but at least they have a plan and a diagnosis.

 

Again, thanks for your response Mary.