Deciding on treatment options

Feel very similar to you.  I am 67 and was diagnosed with endometrial cancer. Initially it was stage 1a . In complete denial I had a laparoscopic hysterectomy and thought that was that - job done.. On my return to see the surgeon he gave me the devastating news that it was stage 2 but because they had not looked at any lymph nodes and there doesn’t seen to be any test to check , I now have to decide whether to go back to surgery and check lymph nodes, or go ahead with radiotherapy for 5 weeks.  Having been fit and health I look at the list of possible side effects of both procedures and don’t know what to do - apart from cry most of the time which is not like me at all.  Going to see the oncologist next week for a chat.  Because I am only 4 weeks post op think it might be a good idea to heal from first surgery which is going really well and look at problem in small steps.  Doing hysterectomy yoga daily and walking the dogs with a neighbour.  Managing to tell a few people my diagnosis which makes it slightly more real but helps me accept diagnosis.  I suppose my advice is the small steps bit.

Hi

And welcome!

You, Im sure, are feeling like most of us here - namely why me or, in my case WTF !

The good news is that, by being proactive, the PC has been caught at an early stage.  The 'bad' news is this means you now have to make  a really hard decision- surgery or HT/RT.

I see that you have tried to speak with a RT consultant, but I wouldn't make any decision until you have, as the surgeon will, naturally, favour their speciality. If you are still having problems getting an HT perspective, try the PALS team at the hospital ( I'm guessing that at this stage you don't have a dedicated Cancer Nurse Specialist).

Do you have any stats you can share - PSA etc - which would help us with any comments.

Good luck with your decision.

Regards

Stuart

I agree. The diagnosis stage is CRITICAL - so add as much info from your diagnosis (including phrases from your biopsy, which you will have had, because you’re about to speak to the consultants. It is normal to speak to surgeon first, but you WILL get an appointment with an oncologist/ radiologist. If not, insist on it. Our little bunch of friends on here await your information…

Good Morning Amnesiac and a warm welcome to the Prostate Cancer online Community.

It's a very hard personal choice to make and you are correct to avoid "Dr Google".. Whilst we don't have any figures from your diagnosis there is no spread so you have the choice of surgery or HT/RT - have you considered Brachytherapy? (it may well not have been offered but it's available depending on your willingness to travel and suitability).

Personal opinion (and I never got a choice!) do your research - make yourself a list of questions and the pros and cons of each treatment. Take someone with you to the meetings - record them if possible but make notes. You will find many Community members have a diary of their personal PCa journey - read those - we are all different - this will help in your choice of treatment path. You can read mine by clicking on the icon of the beach- I had a few issues - but we all do - 22 months down the line I am amazing for 68!!

If you want to ask us any questions fire away - we are all more than happy to share details.

Good luck with everything and I hope the above helps.

Best wishes - Brian.

Wow what a lovely response. This has really lifted my mood today and I now feel part of a group with similar problems, hopes and aspirations. We are I guess, pretty much in the same boat, fighting a similar fight. 
A bit more about my diagnosis:

Diagnosis: Prostate cancer

Gleason 4 + 3 = 7

All six cores on right and all six cores on left

Index PSA 8.75ng/ml

History of father with prostate cancer previously

MRI scan reported as 23cc PI-RAD 5 area to the left possible early

I have subsequently had a CT and nuclear (bone) scan which were both reported as all clear including lymph nodes. 

From reading other reports I appreciate that when a surgeon is actually looking at me, the scenario may be different, maybe worse. 

I feel like I’m on a conveyor belt moving towards some sort of unknown conclusion and I can’t stop it.

I’m also a bit concerned that they say it hasn’t spread, but what if it did today or next week?

Lastly, I feel absolutely fine now and I am being told I need to have treatment that will certainly make me feel worse - it just seems wrong. More acceptable if I had a massive pain that treatment would improve. Sorry, just sounding off.

Thanks again for being around. 

Hello Amnesiac 

We are all on a journey trying to get to the same destination - cured - but their are a number of routes and in the early stages you have some very important choices to make.

Gleason 7 (4+3) is a Grade group 3 where most of the cancer cells found in the biopsy look likely to grow at a moderate rate, some will grow slowly - so there's no need to panic!!

To save repeating your diagnosis when people ask - it helps if you keep a record of your journey. If you go to your home page and click on the icon of the chair in the top right - it will open up with the word "profile" click on this and then "edit" and you can keep a diary (comes in useful later sometimes!).

Yes - sorry to say - whatever treatment path you go for there's side effects or pain involved - but a positive attitude and the thought that in your case - no spread - that you should be offered "curative" treatment should see you through this.

Feel free to sound off this is OUR Community - it's just a mix of people with one bond - we all pull together to to travel this journey. As I said above the first part of the journey is the hard bit - once you have made your treatment choice the rest is easy. .

Best wishes - Brian.

Hi amnesiac,

your figures look very similar to mine, so check out my own history (click on my icon). I had all options still on the table and I have chosen to go for brachytherapy boost to maximise my chances of being cured (free from recurrence). Come back if you have any questions.  AW

Hi Amnesiac, you are in the same situation as my husband except he was 75 when diagnosed. His father died of prostate cancer, his grandfather died of ‘prostate problems’( cancer was not a word to be said out loud in those days) and his mother and all her female relatives died before the age of 50 with breast cancer. There is a potential genetic link with prostate and breast cancer. Men with prostate cancer are advised to tell their male relatives about their diagnosis so they can get regular checks. In our case, my husband was referred for genetic counselling and now. Our sons are recommended to have annual PSA checks and our daughters to have annual mammograms. They are all in their 40s. I would recommend making your male family members aware.

the decision you now have to make is a tough one. Prostate Cancer uk have produced some excellent booklets about the different stages and different treatments for PCa. You can access them on line. We took the view that ‘knowledge is power’ and I did a lot of googling for academic papers, NICE guidelines, research etc. I then used to pass all the info on to my husband. From this, we used to compile a list of questions to ask in advance of any consultation. We would print 3 copies off - one for each of us and one for the consultant. I would note down the answers! It was , perhaps, too clinical and systematic but it gave us both some sense of control in a particularly uncontrollable situation!

my husband chose the RT and HT route. He will have HT for 18 months in total - last injection in February. I have struggled with the side effects a great deal! I am , though, immensely proud of how he has so stoically ( mostly) plodded on through the treatment. I just hope with everything crossed that there is no recurrence when he stops the HT. even so, the oncologist has said that, having had the treatment, his life expectancy now is no less than a man who has not had PCs

good luck on your journey. I don’t envy you the decision you have to make! My advice is to make sure that when you make the decision you have all the information you need and you make the decision for whatever feels the most right for you! 

Hi I am Tony. Very similar figures, diagnosed in May. Lots on conversations with Prostate  Cancer UK over the phone because they have time and patience. Not rushing anything. I have started the hormone treatment which holds things in abeyance for a while whilst I think and talk. Managing side effects because further side effect medication can have side effects. In discussion with gp about a penile pump because that has no medication or side effects. Has to be a proper one not one off of ebay. They cost around £140 but may e funded by nhs or there is a grant.

Seeing the oncologist for a further discussion on Wednesday but keeping my options open. The main discussion is about side effects but lifestyle changes can help the whole situation.

Hi Amnesiac,

I am 67 as well & was diagnosed with PC earlier this year with a  PSA of 7.6 & Gleason of 4 + 3 = 7 & chose to go down the HT & RT route as I knew I didn't want to have surgery. 

I finished the RT in October, & am due to have my 3rd & final 3 monthly HT injection next month, & have detailed my journey which you can read by clicking on my coffee cup icon.

Whilst each choice will potentially have some side effects, these impact people differently to a greater or lesser extent.  It's a hard decision to make, & as others have said, make sure you do plenty of reading about each option & prepare a list of questions / concerns to take with you to any meetings or discussions you have.

Best wishes

Brian