PSA anxiety.

Below is a copy of part of my profile. My question is really looking for reassurance about my PSA levels. The 7.4 before radiation could have been more as there were no tests between that test in July '18 and treatment in January '19, just over a year ago. The .2 drop you can see from 3.1 to 2.9 was disappointing to me, but seems OK by the specialist and my Dr. I know you can't predict the next result in March which will be 6 months from the September one, but do you have any thoughts? Is my pattern of drop normal? I'm not on HT, in fact I have regular Sustanon injections to maintain a normal level. 

The next bit is the part I copied. I suffer from anxiety and am considering counselling. Thank you for reading this. Wombles, aka John. 

A prostate cancer scare is spoiling my run in to the five years from bowel cancer surgery! Biopsy on 3 Sept. 2018. Grrrrr!
It is Gleason 7 (3+4.) Waiting to talk to specialist about possible treatment or active surveillance etc.
20 sessions of radiation from 5/12/18 Put off until Jan. Developed shingles for Christmas,
25/2/19. The radiation is over with the expected side effects but not too bad after 3 weeks. Specialist mid March. Shingles gone, just a fading rash left. The 5 year mark for bowel cancer was reached and I'm officially disease free! Yessss! Pity the PC arrived to take its place.
18 March 2019 saw the PC specialist. Almost a non event. How are you, good, come back in 3 months with a current PSA test. So, another few years of waiting for the results, but the bowel cancer waiting was worse.
Quick update. PSA now 3.1 from 7.4 last July, (2018.) Hope it keeps dropping!
4/11/19 PSA dropped slightly to 2.9 but nobody seems bothered about that. Next test in March 2020.
Getting very close to 6 years from bowel cancer surgery. It's like a bad dream now, but not one I'll ever forget.
And 6 years passed. I'm still very aware of every twinge.

  • Hi John

    Thanks for getting in touch. It’s good to see you are getting support from our online community.

    You certainly have had a lot to cope with having had surgery for bowel cancer and then a diagnosis of prostate cancer. You are correct that we cannot predict what your next PSA result will be. However, your PSA after radiotherapy should not drop to its lowest point till 18 months to 2 years, so it may have dropped further with you test in March. It doesn’t return to normal because healthy prostate cells continue to produce some PSA. Your PSA level may rise after radiotherapy treatment, and then fall again. This is called ‘PSA bounce’. It could happen up to three years after treatment. It is normal and doesn’t mean that the cancer has come back.

    As you are on testosterone replacement (Sustanon) your doctor will perhaps want more regular PSA tests and digital rectal examinations to check for the cancer returning.  Your consultant should have talked through the risks and benefits of testosterone replacement, as testosterone can feed cancer cells. However, there is evidence that testosterone replacement is safe in men who have been successfully treated for prostate cancer.

    It’s always an anxious time waiting for follow up test results after treatment for cancer. Try to take good care of yourself – eat well, exercise when you can and get sleep (talk to your GP if sleeping is difficult).Keep yourself busy, keep up normal activities and routine as much as you can – working, going to the gym or seeing friends. Distract yourself with movies, books, meditation, having a massage, cleaning, gardening, or try a relaxation technique (for example, breathing exercises). You mentioned counselling and our search engine can help to look at what is available locally to you. Prostate Cancer UK has other ways you can get support.

    I hope this is helpful but don’t hesitate to get back in touch if you have further questions.

    You can also give our Support Line a call on 0808-808-0000. Our lines are open every day from 8am till 8pm.

    Best wishes Jane

    Macmillan Information Nurse Specialist

  • Thank you Jane. PSA dropped from 2.9 to 2.7 this time, the same drop as the one last September. Of course I had hoped for more, but Dr says he is pleased and its all good news. That result is 13 months post rt, so time yet for more trending down. It was an anxious wait, but I found out the day after the test which was mid afternoon. Dr actually sent me a text to tell me! Very kind. I see him again this week and will have a chat, including whether I should wait 3 or 6 months this time. Best wishes, John. 

  • Here I am again, three months later. Now of course I am having to decide whether to have the PSA test or wait until September, six months. Of course I don't want to do it now as I will become very anxious and I did wait for six months for the March one. I just wish the advice wasn't conflicting, i.e Consultant said 6 is fine, G.P. thinks 3. Supposedly the Consultant has more knowledge in his specialist field than a GP? Of course in September it will be 19 months after rt, which may be when the nadir is expected, but other articles say 2 years or even more. And yes, because I have hypogonadism I am still having Sustanon injections, but 4 weekly now rather than three.

    Sorry about the rambling letter, maybe I wanted to write it down and of course hope for some clear advice or opinions.

    Thanks,

    John. 

  • Hi John (wombles),

    Thanks for getting back in touch and welcome back to the online community.

    Worrying about follow up checks after cancer treatment is only natural to do. The uncertainty of the future and what can happen, can be scary. Once you have had cancer the fear of it returning never goes away, even if your cancer has. I am sorry to hear that this is causing you some anxiety and confusion.

    The national guidelines for follow up after prostate cancer treatment (see 1.3.44), is PSA checks are recommended every 6 months within the first 2 years. These are the national guidelines that your consultant will adhere to and all prostate cancer specialists throughout the UK will use.

    You are correct that your consultant is the most experienced and most qualified to advise about prostate cancer and its management. They deliver your care and treat the prostate cancer while your GP helps support you if needed in between appointments. Therefore, the consultant is best placed to advise you about follow up and any concerns you have around prostate cancer.

    It may be worthwhile giving your consultant a call to discuss the conflicting advice the GP has given. They will be able to advise and clarify when your next PSA is required. They can also contact the GP to advise if this is needed.

    After radiotherapy, your PSA should drop to its lowest level (also called the nadir) after 18months-2 years. This can vary from individual to individual. Your PSA level wont fall completely to zero as your healthy prostate cells still will produce some PSA.

    Its common to see a rise in PSA after radiotherapy treatment, then a fall again. This is known as a “PSA bounce”. This can be seen for up to 3 years after treatment. This is normal to see and in no way means your cancer has returned. Any rise will be rechecked to see if this is dropping again.

    I think it may be helpful for you to discuss your worries with your urology team. They can offer you clarity and reassurance about what to expect in the future and how follow up is managed. They are the best placed to advise about any prostate cancer worries you are having.

    If you feel you are struggling with the anxiety and worry, it may be helpful to discuss this with the GP. They can access additional support for you if this is needed. Its common for people to struggle after cancer treatment and return to what they feel is normality. After cancer treatment many people feel and see life differently and this can be difficult to adapt to these changes.

    Mission remission is a helpful site for people living with life after cancer treatment. We also have an online community group life after cancer that may offer you further support, friendship and advice from others going through a similar experience. Support from others who understand what you are feeling, can be invaluable at time like this.

    Wishing you well with your continued recovery.

    Best wishes

    Audrey

    Macmillan Cancer Information Nurse Specialist

     

    Audrey - Macmillan Cancer Information Nurse Specialist
  • Thank you Audrey. Great information and reinforcement that a six month wait is normal. I don't really have to see my Dr. I'm able to ask for my medication online, ( I take tablets for high blood pressure daily.) Thanks again for your prompt reply. 

    John. 

  • Hi there. I was looking through these letters and it’s time for an update! I did wait 6 months and last September it dropped to 1.5 from 2.7. So I was happy with that of course. Then last month (March ‘21) after another nervous wait it came back at 0.83. So, maybe I’m getting close to my nadir? I asked my Dr if yearly wound be ok as that test was 26 months after radiotherapy, but he said to keep to 6 monthly. Thanks again. John. 

  • I went back to the Specialist about reduced flow. An ultrasound showed I was not voiding completely. He was not concerned about anything and said yearly psa tests would do now! I’m assuming he was aware I have monthly Sustanon injections which keep my testosterone at a normal level. So, next psa in March. Thanks again. John. 

  • Hi wombles

    Thanks for getting back in touch.  I am pleased to hear that your consultant is not concerned and has suggested annual PSA checks. 

    It is very likely that your consultant is aware of the Sustanon injections, however if you are in any doubt, do get in touch with them.

    If you need any further support, please do get in touch again

    Best wishes

    Lisa

    Macmillan Cancer Information Nurse Specialist

  • Hi Lisa,

    Yes, I don’t think I need to worry about the Sustanon. Other consultants are happy that I receive monthly injections and my levels are always normal. The psa of 0.83 made me feel reassured as the Public consultant hoped for 1 or even .5 after about two years. I really saw the Specialist about my bladder ultrasound. I had seen him only once before to confirm my prostate bump and he arranged a biopsy, which was intermediate favourable 2 1/2 years ago. All good since then. I’ll concentrate on my second COVID jab which is tomorrow! Thanks for your support. John.