Cancer Unknown Primary : My brother was... - Cancer Thrivers

Cancer Thrivers

Cancer Unknown Primary

Jea9g
Jea9g

My brother was diagnosed on Jan 2nd with Cancer Unknown Primary (CUP).

cancer.gov/types/unknown-pr...

His oncologist keeps bringing up comfort measures. Is there anyone out there with this diagnosis?

12 Replies
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JoelT
JoelTAdministrator

Hi,

This is a really tough diagnosis since it is not clear how to treat it. It must really be hard for your brother and your family.

Has he sought a second or third opinion?

Is his doctor a really experienced general oncologist working in a major Comprehensive Cancer Center?

Has he thought about making an appointment at the epicenter of cancer diagnosis and treatment, the NCI?

Joel

Jea9g
Jea9g in reply to JoelT

He hot a 2nd opinion from a hematologist at Dana Farber and a 3rd opinion from Dr. Allen at Mass General. Sadly, all concurred.

JoelT
JoelTAdministrator

Hi,

I am wondering how your brother is doing and did he seek a second opinion?

Joel

Jea9g
Jea9g in reply to JoelT

Not well but thank you for asking. He came home last Thursday on hospice. I'm sitting with him now. He is heavily medicated and it's just a matter of days.

JoelT
JoelTAdministrator

Really sorry to hear this news. Please know that we all are there to support you and your family.

Joel

He passed last night

JoelT
JoelTAdministrator

How is your brother and how are you?

Joel

Jea9g
Jea9g in reply to JoelT

He died on Good Friday 8 days after getting home on hospice. I'm exhausted and very sad.

JoelT
JoelTAdministrator in reply to Jea9g

I am truly sorry for your loss.

Joel

I am so sorry for your loss.

JoelT
JoelTAdministrator

How is your brother doing now?

Joel

Jea9gI hope this belated reply doesn’t bring up unpleasant memories.

Like others who responded I am sorry for your loss and thank you for reaching out to this group for assistance.

Your brother had a truly rare typ3 of cancer and I hope his passing was as painless as possible for him and a stress less as possible for you and his family.

Unfortunately, sometimes palliative care is the best we can hope for when we reach the end of the line.

However, there is one alternative approach to treating these unique cancers which should be explored.

In most cases, where we know the site of origin o& the primary tumor, we can rely on research specific to that type of tumor to plan a course of action.

In the case of prostate cancer, for example, we can determine if the cancer is confined to the prostate capsule or if it has spread to other tissues or organs. For breast cancer, the BRACA genotype suggests a course of action.

In cases where the site of origin is unknown we have no generic guidelines.

However,if we can find a bio marker that is reli@bly associated with the severity of the cancer then we can proceed to conduct a purely empirical trial.

For example, many cancers produce a population of circulating stem cells in the patient’s blood stream.

These may not tell us where they c@me from but the number of stem cells may provide a reliable way to monitor the progression of the disease.

If that is the case, then the next step is to select a treatment protocol which has widespread applicability across a variety of cancer types.

Medical marijuana qualifies as one such treatment strategy and if I were in a position similar to your brother’s I would follow the Rick Simpson Oil protocol @s rigorously as possible.

It slowed down the progression of my high grade prostate cancer Gleason 9(5+4) after I failed convention treatments ( surgery and salvage radiation).

This lasted for only a few months but I would have persisted if my life were at stake. As it was, I was symptom free at the time and had the luxury of trying other options until I recently found one that seems to be working.

Again, thanks for sharing your story and for serving as an example of how a concerned family member can inspire others.

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