First results in

User

Posted 22 Nov 2018 at 14:53

So just called the specialist nurses to see when we should expect results.

They had a MDT meeting yesterday regarding my husband and want us to go in Monday morning to go through results of CT scan and biopsy with specialist nurse.

Is it unusual to go through results with a nurse?

User

Posted 22 Nov 2018 at 14:57

Hi Gemma,

I asked the same question only a couple of weeks ago, thinking if there was anything wrong it would be a consultant that wiuld tell us. Sadly for us it wasn’t the case, and we were told my husband had PCa by the CNS.

Hopefully for you it will be different.

User

Posted 22 Nov 2018 at 15:13

I had the consultant, a Macmillan nurse, and a.n. other conducting a survey present at my ‘Dear John’ meeting to tell me what I already knew.

They helpfully offerered to record the conversation and gave me a CD of it. Sadly, it never made the Top 40. And I never bothered to listen to it anyway!

Most smart phones have recorders built in, so make your own recording if you want. Some people are overwhelmed and can’t take in what they are told, so ‘evidence’ of what is said could be helpful.

Best of luck, as ever.

Cheers, John.

User

Posted 22 Nov 2018 at 15:36

Ok I have results, nurse called back

Apparently it could be a lot worse

G score is 9

Spread is in lymph nodes close to prostate and one small close in the pelvis

Not in soft tissue

Going to arrange follow up with surgeon

Is this good? I know rather not have anything but could be worse

User

Posted 22 Nov 2018 at 19:19

Maybe not 'good' but it could be worse if it had spread to the bones or another organ.

User

Posted 22 Nov 2018 at 19:23

No to be honest I wasn't expecting good in terms of PSA level so relatively it could of been a lot worse.

I'm just concerned that given this diagnosis we are seeing a clinical nurse specialist on Monday and not an oncologist.

I've asked initial questions to the nurses such as is it curable and what is the benefit of surgery and they don't know

I might call tomorrow and insist we see an oncologist and get a second opinion as it's so important

User

Posted 22 Nov 2018 at 19:37

Absolutely agree with you. A second opinion is always helpful and you can ask all the questions you need to.

User

Posted 22 Nov 2018 at 19:50

Gemma, I was a Gleason 9, diagnosed 11 years ago, so you may take some comfort from that. It is rare for Gleason 9 cases to be curable. I think you were writing that there is a bone met in the pelvis? Bone mets suggest a readiness to spread. Soft tissue mets can be tackled with systemic treatment such as chemotherapy. I totally agree with getting an oncologist's view as he/she will certainly take over treatment from a surgeon, who will have no useful role to play

User

Posted 22 Nov 2018 at 19:54

Thanks AC

Theres no bone mets but in lymph nodes

Nurse seemed quite confident in being able to control for 5 years although imoissimpo to say exactly

User

Posted 22 Jan 2019 at 09:09

Hi guys,

So we have our first oncology appointment this afternoon after 2.5 months on HT. So worried about what they're going to say.

Also my husband has a pain at the top of his left hip, around the bone when you press on it. Could it be the HT?

User

Posted 22 Jan 2019 at 13:03

Gemma,

Practically the same DX as me. T3bN1M1 PSA at start of HT 108 Lymph nodes spread outside pelvic region and 1 small bone met in pelvic bone.

Started HT 20/06/18 and early chemo (6 Cycles) 29/06/18.

Last chemo 19/10/18 then PET/CT Chlorine scan and bloods 4/11/18

Follow up Onco meeting PSA down to 1.4 and all Lymph node shrunk from 3cm (mm?) to 1.5. Normal size about 1cm.

I'm a builder and since DX built an extension and renovated a flat, got my eldest daughter married and managed to live life as close to normal as possible. Chemo was a breeze for me with only a few off days and a foul taste in my mouth for a week each cycle. I know each person reacts differently to any sort of treatment they may get but dont get to down about what is happening to your OH.

Once the treatment is agreed upon things will seem more positive.

All the best and good luck

Andy

User

Posted 22 Jan 2019 at 13:13

Thanks Andy.

I think as it's been so long and in the mean time life has gone on as if nothing has happened that it's going to be a bit of a reality check this afternoon.

Fingers crossed it's still within pelvis so we were told were looking at radiotherapy with curative intent unless anythings changed

Good to hear you've done so well, long may it continue

User

Posted 23 Jan 2019 at 09:09

Ok so yesterday didn't go as planned

Back in November we were told radical radiotherapy would be given with curative intent after being discussed at MDT meeting

Yesterday was first meeting with oncologist and hes advised the dosage of radiotherapy is radical but intent isn't cure and talked about chemo extending life by a year in addition to radiotherapy

Can anyone give me some hope/positives, I feel totally devastated and really don't know how to do this

User

Posted 23 Jan 2019 at 11:28

Hi Gemma not what you wanted to hear BUT it sounds like they are going to throw everything at it which will give your man the best chance of a long remission.

Have they now re-staged him? If so what is his stage and GS??

User

Posted 23 Jan 2019 at 11:39

Sorry to hear this Gemma. Did they say what had changed? Did they say if he was beyond cure why they are still suggesting a radical treatment ie RT?

Bri

User

Posted 23 Jan 2019 at 12:14

Hi, no nothing has changed re stage or Gleason so I'm confused to be honest. We were left 3 months after being told treatment was intended to cure.

I did say we were told that treatment plan was radical radiotherapy and he said yes the dosage is the same as radical but not intention.

I think they do radiotherapy now from results of stampede.

I may call the nurse soon as yesterday was so rushed, he just wanted his chemo form signing and to get us out

User

Posted 23 Jan 2019 at 12:33

Gemma,

I had a similar "CONVERSATION" with my one of my oncologists at the hospital i'm being treated by. And it is very frustrating that they firstly assume you know what they are talking about and secondly don't appreciate that you are sitting there terrified about what they are going to tell you so you don't hear half of what they are saying except for anything that relates to a time scale!

Anyway the other consultant oncologist I have seen was much better and took the time to explain all the in's and out's of what was happening with my treatment.

Anyway to help you here is what i was told, and others please correct me if I have made any mis-assumptions.

Curative intent - Only achievable if the tumor has not broken out of the prostate and usually treated by removing it and follow up HT and/or RT.

Otherwise for men like me treatment is to suppress the growth of the Cancer by HT together with chemo and/or RT.

Now from what I understand HT will only work to suppress the cancer for a certain number of years (each person is different) but by having up front chemo will extend that time. They say a year but research (STAMPEDE TRIAL) is still ongoing so that figure may change with more data. I have been told that I should get 5 years before HT stops working, but I take that with a pinch of salt as I'm pretty sure none of the specialists really know how my body will respond. So far everything has gone to plan.

I have yet to go down the road of finding out what will happen when my HT stops working but from what i've read on hear that's the start of another adventure

I can't say anything about RT as it's not on my treatment plan at present.

By the way if you can get your OH onto the Stampede Trial do so. I'm on it but only as a control sample i.e. I get no different treatment, but he will be monitored longer than usual which is also good.

Hope this helps

Andy

User

Posted 23 Jan 2019 at 15:27

So we have an answer and Im fuming.

We spent months after being told we were on a curative treatment plan, our first appointment with oncology yesterday was confusing.

So I've called the oncology specialist today to get some clarity. Turns out the one effected lymph node is by the rectum which is outside of the radiotherapy area.

So why was this not seen at the MDT meeting? Why were we told treatment was with curative intent? Why was this not explained yesterday?

The only reason we've found out now is because I've persevered and was confused about yesterday's meeting

User

Posted 23 Jan 2019 at 16:00

Why can't they treat that node? Too close to other organs?

Ask why it can't be surgically removed??

Does he have spread to bones too?

Lots of good news stories from the states about treating Oligometastatic disease.

I don't want to give you false hopes but don't take it for granted that your MDT team will have all the answers and remember they will also have one eye on NICE and costs.

User

Posted 23 Jan 2019 at 16:05

Thanks Francij1

Yes too close to bowels to radiate but I'll ask about surgery

She was quite positive about controlling it and his PSA has come down to 0.2 from 167 after 2.5 months on ht which is a good indicator

Just upset that the plan has changed and we've found out by accident. I presume the lymph node hasn't moved so someone's got it wrong. No bone spread

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