Newbie- diagnosed 30 months ago

Hi Ross and a warm welcome to the forum, I am sorry to hear you have thyroid cancer and that your friend has terminal prostate cancer, As for your concerns regarding your prostate i would trust the consultant at The Royal Marsden and his BPH diagnosis, your fluctuating PSA numbers don't follow a progressive rise you would expect with cancer, but an enlarged prostate where PSA levels can fluctuate up or down by a third in a day seems more likely looking at your figures, I hope your urologist appointment gives you answers, take care.

Eddie

Thanks Eddie for reassuring opinion on my PSA figures. The thyroid mf has gone for good and I am all clear on that front. My colleague sadly passed away during COVID times.

I agree that it's fair to trust Royal Marsden consultant and the trend of my PSA is the reason to believe Ca is dormant. I am educating myself on the subject and lack of thyroid gland makes my symptoms a bit complicated to predict. I am mostly focusing on learning about food intake and supplements that could help me with the symptoms. I found a paper that claimed levothyroxine doses could impact PSA figures and that explains why my PSA rocked after my TT surgery when I was on higher dose of levothyroxine. I am glad that I did biopsy. Although it's an emotional burden knowing that the mf is there but now I am watching it rather than the other way around.

Sending everyone hugs 

Ross

Hello Phsjan  Another warm welcome to the online Prostate Community.

Yes you do have some "interesting" PSA readings there and I am at a loss to understand why they fluctuate like that.  I would be very interested as to what your Urologist has to say on Monday, please do let us know.

Best wishes - Brian.

Hello Millibob, thanks for reading my post and replying.

Indeed fluctuating PSA is not very common with PCa. As the consultant at Royal Marsden believe my PSA figures are not only because of Ca. It's more like combination of enlarged prostate, prostatitis AND Ca. I am convinced TT and levothyroxine (T4) plays a role in fluctuations of PSA. My TSH is almost undetectable as a result of levothyroxine and this adds to the complications.

will update you on my appointment with urologist.

Ross

Hi Ross

I can understand your worry as just waiting around to see if something will become a problem has to be constantly on your mind. I think you need to mainly trust in what your urologist is saying, because you don’t want to have surgery etc when it’s not necessary. But there nothing wrong in questioning the treatment as it’s your body. Main thing I would be following up and keeping an eye on is the 4x3 from that 1 core. Because it’s 4x3 and not 3x4 it is saying within that one sample there is a larger amount of a faster growing cancer (4)  3 is naturally a slow growing. Small but significant point because that’s a higher grade of 7 overall. So a regular MRI is good. I would also ask if a PSMA PET scan was something you could have as that shows a lot more. It’s new and expensive and I can imagine it may not be available, but “don’t ask don’t get”. Have a read up about them and see that’s something you would like to ask for in your next meeting. Do let us know how you get on as we are also learning all the time about PC 
best wishes

L

Hi Barry,

Thanks for your input, I appreciate it. I wasn't aware of PSMA PET scan. I assume it's similar to radioactive iodine therapy and the following scan I received for my Thyroid Cancer. Luckily there are nuclear medicine departments in my local area. I will discuss this with my urologist on Monday.

It's been rough 3 years ride, but I am a different person now with a lot of excitement about what future has to offer for me.

My copilot of 22 years left the cockpit mid flight in the turbulent part of the journey and never asks how I am handling the plane.

My employer is making my post redundant after 14 years of continuous service, where I am taking refuge from all the trauma. I love my job, my house, my weekend gardening, ... BUT, I don't care about them slightest. Now the important things in my life are myself, my children and legacy I am going to leave behind when times come.

Love you all,

Ross