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Treatment or not

User
Posted 05 Jun 2019 at 07:48

Just had results. Grade 7 some aggressive cells. Waiting for treatment options. Do I have treatment or not ?  Why not just except the inevitable. I have a very supportive wive but could she cope with the side affects of treatment. Any one out there feel the same or made the decision not to have treatment. 

User
Posted 05 Jun 2019 at 08:54

Hi, and welcome to the forum. Sorry you're here, but you'll get some great support.

However, you haven't really given enough information about your situation for people to help you much yet.
I suspect "Grade 7 some aggressive cells" means you are 3+4?
Do you know your biopsy results in terms of cores affected and volume of cancer cells, location, T?N?M?, PSA, bone scan (might not have had that yet), etc.
It's helpful to put this detail into your bio in your profile, and keep it updated, so people here can make more targeted suggestions based on your own situation - click on my avatar to see an example. Everyone is different, and even for identical diagnosis, people will have different preferences on treatment.

In some cases, 3+4 patients are offered Active Surviellance (AS), i.e. do nothing but watch until it gets worse before further treatment, although that's unusual. We would need more of the details above before commenting. One thing about PCa is that it moves slowly, so you have plenty of time to decide what treatments you want, based on your own situation and preferences.

User
Posted 05 Jun 2019 at 10:01

Difficult though it may be, you need to wait and see what your options are.

Key to that (besides your age!) is the TxNxMx Andy mentioned.

Tumour grade; is it a 3 or a 4?

Nodes - is there spread to local lymph nodes?

Metastases - is there any sign of spread to other parts? (eg bones?).

We're all different, and options need to be based on exactly what disease you have. You then have to look at the side effects of each option. You are right to think about your wife, but you must also consider how you might manage with some of the (almost inevitable) side effects of treatment.

Read the toolkit, while you wait to hear from BOTH teams - surgeons and oncologists.

User
Posted 05 Jun 2019 at 14:59
I don't mean to sound negative, but please do bear in mind that death from metastatic prostate cancer is not a pleasant or an easy way to go, and if you're a relatively young man, have a G7 or greater cancer, and opt not to have it treated, then such a death is a high-probability outcome. I really would suggest getting recommendations from a urologist (surgery) and an oncologist (radiation treatment) and very carefully considering the advice that they give you. Prostate cancer really isn't something that can be ignored - it won't go away if you ignore it.

If you have questions about treatment options, the PCUK nurses (Freephone number at the top of the page) are wonderful and will be happy to answer your questions.

Please do keep us up-to-date with the progress of your diagnostic tests and the decisions you make.

Very best wishes,

Chris

User
Posted 05 Jun 2019 at 23:52
There are at least 27 kinds of prostate cancer. The most common is adenocarcinoma. If the biopsy has shown that you have some intra-ductal carcinoma, this is often more aggressive than adeno so you may be advised that active surveillance is not a good idea and surgery and/or radiotherapy is the best option.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Jun 2019 at 00:16

hi 

Do have a look at my profile.   It includes both myself and my brother who is around your age.  Agree with all those already posted.  Clarify exactly what has been discovered.   Is this 'std' PCa  or not. ?  

I have no major side effects and had non nerve saving.  I assume you may be with RDE, I had very professional NHS service. 

A huge difference I found as my brother lives in Australia.   I had to ask for information whereas he was offered it, a lot accesible on line, ie digital scans etc etc

 

Hope this helps.

Gordon.

 

Edited by member 06 Jun 2019 at 00:17  | Reason: Not specified

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User
Posted 05 Jun 2019 at 08:54

Hi, and welcome to the forum. Sorry you're here, but you'll get some great support.

However, you haven't really given enough information about your situation for people to help you much yet.
I suspect "Grade 7 some aggressive cells" means you are 3+4?
Do you know your biopsy results in terms of cores affected and volume of cancer cells, location, T?N?M?, PSA, bone scan (might not have had that yet), etc.
It's helpful to put this detail into your bio in your profile, and keep it updated, so people here can make more targeted suggestions based on your own situation - click on my avatar to see an example. Everyone is different, and even for identical diagnosis, people will have different preferences on treatment.

In some cases, 3+4 patients are offered Active Surviellance (AS), i.e. do nothing but watch until it gets worse before further treatment, although that's unusual. We would need more of the details above before commenting. One thing about PCa is that it moves slowly, so you have plenty of time to decide what treatments you want, based on your own situation and preferences.

User
Posted 05 Jun 2019 at 09:58

Originally Posted by: Online Community Member

In some cases, 3+4 patients are offered Active Surviellance (AS), i.e. do nothing but watch until it gets worse before further treatment, although that's unusual. We would need more of the details above before commenting. One thing about PCa is that it moves slowly, so you have plenty of time to decide what treatments you want, based on your own situation and preferences.

Please do not confuse AS with watchful waiting, as its name states Active Surveillance involves frequent PSA tests and MRIs ( may also be biopsies ). I have been on AS for more than 6 years, and it it certainly not "do nothing".

Alan 

User
Posted 05 Jun 2019 at 10:01

Difficult though it may be, you need to wait and see what your options are.

Key to that (besides your age!) is the TxNxMx Andy mentioned.

Tumour grade; is it a 3 or a 4?

Nodes - is there spread to local lymph nodes?

Metastases - is there any sign of spread to other parts? (eg bones?).

We're all different, and options need to be based on exactly what disease you have. You then have to look at the side effects of each option. You are right to think about your wife, but you must also consider how you might manage with some of the (almost inevitable) side effects of treatment.

Read the toolkit, while you wait to hear from BOTH teams - surgeons and oncologists.

User
Posted 05 Jun 2019 at 14:59
I don't mean to sound negative, but please do bear in mind that death from metastatic prostate cancer is not a pleasant or an easy way to go, and if you're a relatively young man, have a G7 or greater cancer, and opt not to have it treated, then such a death is a high-probability outcome. I really would suggest getting recommendations from a urologist (surgery) and an oncologist (radiation treatment) and very carefully considering the advice that they give you. Prostate cancer really isn't something that can be ignored - it won't go away if you ignore it.

If you have questions about treatment options, the PCUK nurses (Freephone number at the top of the page) are wonderful and will be happy to answer your questions.

Please do keep us up-to-date with the progress of your diagnostic tests and the decisions you make.

Very best wishes,

Chris

User
Posted 05 Jun 2019 at 20:14

Andrew puts it well. You need to discuss your very individual diagnosis with your consultant along with the treatments on offer and any particularly recommended for you, if indeed a recommendation for a specific treatment is made. Often, the patient either receives a less than full explanation of what treatment can involve/lead to or it is difficult to take in all your are told at the time. It can be helpful if you take someone else with you to an appointment to help recall what is said. Also, it would help you make a treatment decision if you learn more about treatments (although all of them may not be available to you). I suggest you download or obtain a hard copy of the 'Toolkit' free from the publications section of this charity. This will put you in a better position to understand and decide how you wish to proceed.

Edited by member 05 Jun 2019 at 20:15  | Reason: Not specified

Barry
User
Posted 05 Jun 2019 at 21:54

Gleason scale 3+ 4=7 focal intraductal carcinoma. That's all the information I have at the moment. Specialist nurse says the M D T team will definitely recommend treatment. She will phone me with their recommendations, probably next week. 

User
Posted 05 Jun 2019 at 22:59
Posted: 05 Jun 2019 at 21:54

Gleason scale 3+ 4=7 focal intraductal carcinoma. That's all the information I have at the moment. Specialist nurse says the M D T team will definitely recommend treatment. She will phone me with their recommendations, probably next week. 

User
Posted 05 Jun 2019 at 23:52
There are at least 27 kinds of prostate cancer. The most common is adenocarcinoma. If the biopsy has shown that you have some intra-ductal carcinoma, this is often more aggressive than adeno so you may be advised that active surveillance is not a good idea and surgery and/or radiotherapy is the best option.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 06 Jun 2019 at 00:16

hi 

Do have a look at my profile.   It includes both myself and my brother who is around your age.  Agree with all those already posted.  Clarify exactly what has been discovered.   Is this 'std' PCa  or not. ?  

I have no major side effects and had non nerve saving.  I assume you may be with RDE, I had very professional NHS service. 

A huge difference I found as my brother lives in Australia.   I had to ask for information whereas he was offered it, a lot accesible on line, ie digital scans etc etc

 

Hope this helps.

Gordon.

 

Edited by member 06 Jun 2019 at 00:17  | Reason: Not specified

User
Posted 16 Jun 2019 at 14:16

Decided to have surgery,would be silly not to. Cancer is localised, all on the left. Surgeon will try to save the nerves on the right. 

User
Posted 16 Jun 2019 at 15:55
Sensible decision. Do you have a date for the surgery yet?

There’s lots of useful advice on this site about how you can prepare for your surgery - what to buy, doing pelvic floor exercises, and many other things.

Best wishes,

Chris

User
Posted 16 Jun 2019 at 17:11
PM 18th July, surgery 23rd. Surgery pack is on its way. My wife teaching PFE albeit to women, so all good.

Allen

 
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