What is remission?

User

Posted 20 Sep 2018 at 11:25

Good morning

My employers have been super supportive and I am currently on a phased, part time return to work. As part of the support, I see an occupational health advisor.

This morning, he wrote a report for my employers which states that I am in remission. I’m not actually sure what ’in remission’ means and I fear it is commonly misunderstood. I think a lot of people think it means ‘cured’.

I finished my salvage radiotherapy in June and will continue on bicalutimide until August 2019 (18 months in total).

It seems to me a bit premature to talk about remission, especially if I’m still on treatment.

Dec 2016 - prostatectomy

Jan 2017 - PSA 0.014

Jan 2018 - PSA 0.023

Jan 2018 - PSMA scan detects uptake in nodes in prostate bed area

February 2018 - start bicaltimide

April 2018 - start 33 sessions of radiotherapy

July 2018 - PSA less than 0.006

Any thoughts on ‘in remission‘ would be appreciated.

Ulsterman

User

Posted 20 Sep 2018 at 17:06

Thanks, everyone. I will make sure my employers understand what remission means.

Ulsterman

User

Posted 20 Sep 2018 at 22:52

That's a dictionary definition rather than a medical model. My previous comment stands - if Ulsterman is concerned that his employer may be less accommodating or flexible, he should challenge the OH doctor to amend his language in the report since there is no way he is in remission at this point.

From the Cancer Research UK website:

Cure or remission
These days, doctors are able to cure many cancers. But some cancers can come back many years after treatment. So you may find that your doctor is very unwilling to use the word 'cure', even though there is no sign that you have any cancer left. Doctors usually say that your cancer is in remission. This means that there is no sign of cancer in your body. If there are any cancer cells left:

- there are too few to find
- there are too few to cause any symptoms
- they are in an inactive state and are not growing

Doctors can't be sure that the cancer has completely gone after treatment. So they may suggest that you have some type of long term treatment, such as hormone therapy or a targeted cancer drug. Your doctor may call this adjuvant treatment. Adjuvant treatment can also be a course of chemotherapy or radiotherapy after surgery. The aim of this treatment is to try to prevent cancer from coming back.

It can be very difficult to live with the fact that your cancer may come back. Even if doctors tell you that they are 95% certain your cancer has gone for good, you may find it very upsetting that no one can say for sure that you're cured.

Some people find that they can't stop thinking about it even after the end of their treatment. You may feel a little frightened of planning anything in the future or you may feel sad or depressed.

For most people who are in this situation, each day lowers the risk of a recurrence. Most cancers that are going to come back will do so in the first 2 years or so after treatment. After 5 years, you are even less likely to get a recurrence. For some types of cancer, after 10 years your doctor may say that you are cured.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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User

Posted 20 Sep 2018 at 13:59

Hello Walter

I've followed your story closely and admire your fortitude. I wish you luck.

I too have wondered about the terms used for success when discussing Pca. Remission in any other context means a temporary state of affairs, though it could be a very long time and certainly a remaining life-span for men of the age group susceptible to this horrible disease.

I suspect it gives the medical profession the room to imply cure whilst being technically accurate given the nature of malignant disease, but that doesn't explain why the word cure seems to be so readily used. Maybe it's just simpler?

User

Posted 20 Sep 2018 at 15:01

I think it's a rather loose term which does not exclude there still being some cancer cells but that these are no longer a problem at the time according to all indications, if they exist at all. However, at some stage cancer could again need treatment so you would no longer be in remission but if after further treatment indications showed that cancer was no longer a problem over time, you could again be considered to be in remission.

It is often the case that consultants say they are treating you with curative intention or words to that effect (rather than where cancer is advanced and you are being treated to delay progression). In remission is a less definite term which particularly with PCa takes into account that even years later cancer may again take hold.

Barry

User

Posted 20 Sep 2018 at 16:21

I'd think Old Barry is right. It's a term that means all signs of disease are gone. Although it doesn't mean it won't come back.

I was told I'm stable and could visit my GP instead of the hospital, that's after only 15 months. I'd never accept anyone saying I'm cured but I'd think I'm in remission until it's shown otherwise at my blood tests.

User

Posted 20 Sep 2018 at 17:06

Thanks, everyone. I will make sure my employers understand what remission means.

Ulsterman

User

Posted 20 Sep 2018 at 19:37

Being ‘in remission’ means that there is currently no sign of active cancer and no ongoing treatment for the cancer (although there may be treatment for the impact of having had cancer or treatment for the side effects of cancer treatment). ‘Full remission’ is defined by NICE as being 10 years cancer free - my dad received a letter from the hospital exactly 10 years after his RP informing him that he was officially ‘in remission’.

I think I would be asking the occupational health doctor to amend his report.

Edited by member 20 Sep 2018 at 19:38 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 20 Sep 2018 at 21:56

Definition of remission:

"temporary diminution of the severity of disease or pain"

So I think Ulsterman s employer is correct from what I can see of his stats. Hopefully temporary in this case means pemanant in which case it would be a cure but of course we never allow ourselves to use that term!!!

User

Posted 20 Sep 2018 at 22:52

From the Cancer Research UK website:

- there are too few to find
- there are too few to cause any symptoms
- they are in an inactive state and are not growing

Some people find that they can't stop thinking about it even after the end of their treatment. You may feel a little frightened of planning anything in the future or you may feel sad or depressed.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 20 Sep 2018 at 23:25

Thanks, everyone. Whilst my employers have been brilliant, I think that accurate use of language is important. It is also important that accurate conclusions are reached by those reading the report. This is especially important as the report written will help to determine what reasonable adjustments may need to be made moving forward. I wouldn’t like my employers to become less supportive all because a word had been misused or misinterpreted.

My cancer Nurse specialist is going to call me tomorrow to let me know if my oncologist would be happy with the use of the word remission. When I spoke to the PCUK Nurse today, she said it wasn’t a word commonly used with PCa.

once again, thanks everyone, you’re a very helpful bunch of people.

Ulsterman

User

Posted 24 Sep 2018 at 06:02

My cancer nurse called me back. My oncologist is not happy with the use of the ‘in remission’ phrase and wants to write to the occupational health advisor about it. As I am on treatment, apparently I can’t be in remission.

Ulsterman

User

Posted 24 Sep 2018 at 06:51

Makes sense.

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