Hi all nice to read so many positive comments

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What seems a long time ago but is just short of 2 years I was diagnosed with Advanced PC  with a Gleason reading of 5+4 and immediately had a full bone scan and pelvic scan which showed that the cancer had spread to parts of the bone through I believe one lymph node. My initial PSA reading was 17 raised to 22 within one week prior to any treatment. I was immediately started on Prostap and a course of chemotherapy but told that I couldn’t being given radiotherapy due to  the proximity of the tumour to the rectum. Lots of side effects with chemo but seemed to have some success as consultant then put me forward for radiotherapy. After 12 week course PSA level down to 0.5 - well pleased however numbers started to creep up and after reaching 2.2 three months ago was placed on Bicalutamide daily, I am now awaiting with some trepidation results of blood test at the end of this month. Since Chemo, Radiotherapy and HT have experienced several side effects, muscle weakness, mood swings, tiredness, thin skin and sudden sharp pains (like electrical impulses). Nice to now be part of a community and not feeling alone. Has anyone had this blip after treatment and experienced results after Bicalutamide

  • Hi Joka1916 and welcome to the forum, Seems we have a few things in common, I was diagnosed nearly 2 years ago with APCa, been through the bicalutamide, prostap and radiotherapy RT, but no chemo, PSA steady at 0.08 until December when it rose to o.24 then 0.48 in March, then June?. Many people get a PSA bounce "blip" and often it is temporary and as the cause can be your cancer cells reacting to your immune system recovering from cancer treatment an going on the offensive there is reason to believe a PSA bounce is often a good thing, best wishes,

    Eddie

  • Thanks Eddie, nice to share things. Read about a PSA bounce lip so will be interested in next reading, will keep group informed

  • Hi  .

    Welcome to the family. My husband has advanced metastatic prostate cancer with spread to distant lymph nodes, diagnosed in July 2020. So far he has had 3 biochemical recurrences but he has a rare aggressive form so it is proving difficult to keep on top of things. He has been on Prostap since initial diagnosis, had 33 sessions of EBRT, 18 months of Bicalutamide, 18 months of Enzalutamide, 6 cycles of Docetaxel and recently 5 sessions of SBRT. Bicalutamide is a first attack to stop the cancer cells from binding to their food source of testosterone and can work well, however, there are stronger binders that can be used if that one fails such as Aptalutamide, Enzalutamide or Darolutamide. Abiraterone works in a different way but is also very effective. One thing I would ask is whether you can have a PSMA PET CT scan which will pinpoint where the cancer cells are that are causing the problem - if in isolated spots then it may be possible to zap them with SBRT. We are lucky to have a very proactive oncologist who reassures us that he still has more tools in the toolbox so take heart that there are plenty of treatment options available and more being trialled all the time. Hubby suffers from similar side effects, apart from the sharp pain (possibly peripheral neuropathy?), but it goes with the territory of hormone therapy and is better than the alternative. Please come back with any questions and feel free to join in any of the threads.

  • Good morning Alwayshope, it is so reassuring to read other people’s experiences, whilst I cannot fault the treatment that I have received from our local hospital, the 4 month wait between results (blood tests) can be a little worrying. I am amazed with your informative comments which gives great hope that there are a variety of treatments available. With regard to the PET CT scan I seem to recall having this a the offset which showed cancer spots on my arms and legs however the consultant was not concerned about these as by stopping the supply of testosterone these would hopefully shrink and.not be a problem. I am surprised that a further scan has not been done to see the current situation of these cells. Maybe I should ask for one? You are very well informed and I appreciate all your positive information. Good luck and best wishes

  • Good Morning  

    A cracking post - thank you although I am so sorry to read of your 2 year journey.  no one should face this alone and with your positive attitude I think you are doing great.

    As so far I have managed to "dodge" Chemotherapy I can't comment too much but you have already had some great replies.

    So stick with us and welcome to the Community - we are a great bunch.

    Best wishes - Brian.

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  • Thanks Brian, appreciate the comments and support. Just read through your journey and gives great comfort, good luck Thanks John

  • The PSMA PET CT scan is a very accurate one at highlighting where the recurrence is which is causing the problem and is normally only offered once a recurrence raises its ugly head, it uses a tracer to bind specifically to prostate cancer cells. The treatments like chemotherapy were designed to get rid of things like bone mets systemically and that, along with the radiotherapy, should have dealt with most of the cancer cells. The lymphatic system can act as a superhighway for the cancer to spread and what happens is that micromets will lay dormant, but suddenly decide to start growing. The latest thinking is that very focused radiotherapy SBRT works well at eliminating isolated hotspots. Let us know how you get on.

  • Next blood test end of this month and consultation mid June. Following all the great information from this community feel more versed to ask questions. Thank you all and will certainly keep in touch re our journeys together ClapClap

    ps Just something to throw in the mix, haven’t been on holiday (abroad) sine pre Covid and diagnosis, has anyone experienced trouble getting travel insurance. Any suggestions would be appreciated 

  • Good Morning John ()

    My "early morning" post was because I am sat on my balcony on holiday in Turkey Sunglasses. (it's 9.30 now - clear blue sky and a nice 25c!!)

    We do have a forum for travel insurance and here's the link:

     Travel insurance forum for cancer patients 

    Just click on this and it will take you there. From personal experience it pays to telephone the insurance companies as once you fill in the online form it tells you to telephone anyway  and they all use the same algorithms!

    Mrs Millibob has issues too (Medical!!) and we have joint worldwide insurance for a year which cost £ 780 and as I Community Champion I can't recommend anyone but if you add these two words together you will get there - insurance and with!!

    I do hope you get sorted.

    Best wishes - Brian.

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    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Strength, Courage, Faith, Hope, Defiance, VICTORY.

    I am a Macmillan volunteer.

  • I can't help with the travel insurance because I live in Greece but if you are travelling make sure that you have the GHIC card from the NHS. Hope you get sorted but the difficulty at the moment may be the recurrence and until that is sorted some insurance companies will decline to cover for prostate cancer.