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PSMA scan for PSA of 0.023?

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User
Posted 21 Feb 2018 at 21:31

Wow I’m glad you’ve not wasted the money and have a plan ahead. Even though it’s just 2 lymph nodes are they going to blast the whole area ? Was targeted therapy offered or advised ? I’m simply baffled mate. Where the Hell is my cancer ?? My psa expected at roughly 20 now. Well we will soon find out as I have a full body CT and Bone scans end of March. Hopefully it’s all a mistake and I’m actually fine. I’m living , loving , working ..........
Best wishes as ever from our camp

If life gives you lemons , then make lemonade

User
Posted 22 Feb 2018 at 09:57
Chris

They will blast the whole prostate bed and the lymph nodes. I don't know if this is the standard treatment, but my oncologist does 32 days of radiotherapy to the prostate bed, or 37 if she wants to go further up the prostate bed to include lymph nodes. She doesn't like doing the 37 day treatment unless she knows for certain it is needed as there are more risks of later complications, I think in the bladder. At my January appointment, I told her I wanted the 37 days regardless and she said she would consider it. Now we have the evidence it is needed. Without the PSMA scan though, I might have had the 32 day treatment and left the cancer in the lymph nodes totally untouched. She said there's no way the Choline scan would have picked things up. Hope that all makes sense.

I had a few lymph nodes removed during surgery and so, inevitably, am wondering why they didn't remove these two. Maybe that's not standard practice. I'm not blaming my urologist, but just wonder what would have happened if he had removed them.

I'm so sorry they haven't found where your cancer is hiding and I hope the March scans finally find out what is going on.

Ulsterman

User
Posted 22 Feb 2018 at 10:37

Not all urogists routinely remove lymph nodes but when they Do, they tend to only remove the ones immediately next to the prostate.

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

User
Posted 22 Feb 2018 at 17:37
Originally Posted by: Online Community Member

The plan of action? I start bicalutimide today for six months and will have 37 sessions of radiotherapy.

Quite worried about the bicalutimide. Don't want boobs!

Off to pick up my prescription.

Ulsterman

You should consider asking the Onco for Tamoxifen to try and counter the man boob growth/pain

Not certain to work by all accounts but for me it’s worth the try as I started getting growth and pains fairly quickly

User
Posted 22 Feb 2018 at 21:26
She said no to tamoxifen and nearly took the head off my shoulders for suggesting a burst of radiotherapy to my breasts. I was taken aback as I have a really good relationship with both my oncologist and urologist, and some members of the forum have commented that I seem to have treatment more like a private patient than an NHS one. But on the radiotherapy to the breast, I was spoken to sternly. It shut me up, and, believe me, that isn't easy to do.

I'll see if I can get round my GP for tamoxifen.

Hope things are going a bit better for you, Kayaker Bill.

Ulsterman

User
Posted 22 Feb 2018 at 21:30

It's odd isn't it that so many men get it but some oncos just refuse outright. I wonder if there are additional risks that they know and we don't? I shall ask Mr B when we next see him.

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

User
Posted 22 Feb 2018 at 21:31

My surgeon said he could remove all the lymph nodes as well as everything else. But one guarantee he could make was that he could not put them back. He said full removal of lymph nodes could lead to mobility problems as the legs could swell.

So he just took a smallish sample and removed 15

Bri

User
Posted 22 Feb 2018 at 23:28
Originally Posted by: Online Community Member

It's odd isn't it that so many men get it but some oncos just refuse outright. I wonder if there are additional risks that they know and we don't? I shall ask Mr B when we next see him.

My Onco seemed reluctant and more worried about risk of DVT rather than anything cancer related

But she did prescribe 10mg weekly and will put up to 20mg next week when I’ve recovered fully from my chest infection

User
Posted 23 Feb 2018 at 07:26

Yes , as I’ve said from the very start , it still seems wherever you are in the country you may be treated differently despite having an identical PCa and scores !! I had to fight and fight for Cialis !! But Tamoxifen 20mg offered on a plate. Offered RT but it was a no no no to 20 sessions instead of 35.
I was dry almost immediately after surgery and it was stated I was fifth in a row after Mr X had performed on me. Let’s hope his technique is widely shared around the country.
I guess also Walter that some Oncos hate the fact that we have informed ourselves via this site and google etc.

If life gives you lemons , then make lemonade

User
Posted 23 Feb 2018 at 10:35
Chris

Do you take tamoxifen 20mg weekly or daily? I'm going to ask my gp.

My daughter who is training to be a doctor told me that doctors have a name for well-informed internet-searching patients. My oncologist laughed when I said that to her and said I definitely didn't fall into that camp and that she enjoyed our consultations! But there is no way on God's earth she is going to blast my breasts as a precaution!

Ulsterman

User
Posted 23 Feb 2018 at 13:09

It’s great to have a good relationship with your Onco. Mine fully understands my decisions and I asked him if I was being stupid and he said not at all. He’s a prof of medical Oncology. He’s running the new immunology stuff here in Southampton. He’s made it clear I’ll need treatment —he even suggested I may not reach 56 , but he knows I want good years with QOL.
I took 20mg Tamoxifen once per week mate

If life gives you lemons , then make lemonade

User
Posted 09 Mar 2018 at 15:55
My GP had never heard of tamoxifen being used to prevent breast pain and growth. He did a bit of reading up on it and said it seemed perfectly sensible and prescribed it.

Ulsterman

User
Posted 09 Mar 2018 at 16:31
Well good on your GP, quick question though, what will the Onco say when he/she finds out? I think it’s better that all the information about treatment is clear to all involved and you have a bit of an issue with an Onco daying no to a treatment and a GP saying yes.

I’m now on weekly 20mg, though my Onco seemed a bit reluctant. I think it is helping slightly with the pain as it seems to be lessening and in a less large area beneath the nipples - there are small moobs though but hopefully growth can be halted

The 10mg didn’t seem to be helping much though I wasn’t on it for long

Edited by member 09 Mar 2018 at 16:43  | Reason: Not specified

User
Posted 09 Mar 2018 at 21:44
Out of curiosity Ulsterman,

What dosage did your GP prescribe?

Bill

User
Posted 09 Mar 2018 at 21:57

Love it Walter. Guide your own recovery. To be informed is excellent. My GP said I know far far more about PCa than him ! Good luck

If life gives you lemons , then make lemonade

User
Posted 10 Mar 2018 at 11:31
Bill - I'm on bicalutimide for six months and don't see the oncologist again until late July, so I'll cross the GP/oncologist bridge then if I have to. I have been prescribed 20mg per week. TBH, I don't want man boobs if I can avoid them so I don't care. I suppose the question would be how soon one stops using tamoxifen once the bicalutimide stops.

Chris - once again, this forum has empwered the patient!

Ulsterman

User
Posted 10 Mar 2018 at 13:38
Yep

I agree with you Ulsterman, Oncos need to take gynecomastia more seriously

Kudos on getting the treatment you need

User
Posted 20 Jul 2018 at 15:24

An update on my post SRT PSA result.  Pre treatment it was 0.023.  It is now 0.006.  Oncologist is over the moon and I’m off backpacking in Central America.

Ulsterman

User
Posted 20 Jul 2018 at 16:33

Brilliant news. Just what you want. Enjoy your backpacking trip.☺

 

Ann

User
Posted 20 Jul 2018 at 17:24
Great news. Chuffed for you and you had the evidence in front of you. Enjoy your holiday

If life gives you lemons , then make lemonade

 
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