Diagnosis journey continues, not straight forward

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My 59 year old husband has been diagnosed with PC, with a gleason score of 3+4. His last blood test in February showed a PSA level of 24.    We have been told that looking at the MRI scan and from the samples taken at the biopsy that the tumour is in one side of the prostate gland.  We believe that there may be some small break through from the gland and there are some areas of concern in 2 lymph node areas.  I believe that the areas of concern are not in the pelvic area, with no lymph node involvement showing in this area.  

A bone scan was done which came back clear.

The complication my husband has is that he suffers with ulcerative colitis which is a chronic inflammatory bowel disease.  The clinic nurse specialist would not give him the hormone treatment straight away until he has had a PET scan, as they want to find out whether or not the colitis is causing the issue with the lymph nodes.  They have said that depending on the results of the PET scan that surgery could be an option if no lymph node involvement is found, so I assume that any break through is minimal. 

I appreciate that this is not a straight forward case, but was wondering if anyone with the same gleason score as my husband has experienced spread to the lymph nodes out with the pelvic area without the pelvic lymph nodes being involved.

Many thanks.

  • Hello Worried Wifet, let the tears flow! I cried buckets at the time and trying to stop them was just so exhausting. Things will improve once you have a treatment plan Blush

    I really hope that you feel you are getting support from all of us who are further along this somewhat rocky journey and can understand the experiences and emotional impact of those first horrible weeks and months. 

  • Hi Worriedwife - we’re just starting this terrifying journey what an amazing post that was thank you it gave great comfort. 

  • The people on this forum are an absolute godsend in terms of the support and compassion they provide when dealing with their own issues.  You all really help in the difficult moments.   I hope that in time, as my own journey moves forward, I will be able to give some support to others similar to what you have all given me.

  • Hello Caras

    thank you! I’m glad I was able to help. The start of this journey was, for us, horrendous.  From our own experiences can I recommend the following, please?

    1, keep a diary! Note down the name and contact details of everyone you speak to and what they said, dates and times etc. After a while it all becomes a blur and you might need to challenge delays or contradictions further down the line.

    2 Be politely assertive. You will probably need to push for timely appointments and make sure you don’t fall into an administrative black hole.

    3. remind the hospital that the government referral to treatment time for cancer target  is 62 days maximum. That is, from the day your gp refers someone to hospital with suspected cancer there should be no more than 62 days until first treatment for cancer is given. ( not all hospitals are achieving this target but it’s a good stick to beat them with if there are delays!)

    4. If you can, let the hospital know you can take last minute cancelled appointments. It’s a good way to jump the queues.

    5. Get as much info as possible about prostate cancer and its treatment. The more knowledge you have, the more you can question and the more sense of control you will have. Look up side effects of treatment etc

    6. If things go wrong, remember there is the hospital Patient Advice and Information Service (PALS) who might be able to help sort out problems. 

    7. look after yourself, too. This is a marathon and not a sprint. This is also a couples illness ( something the NHS can’t recognise). it is a journey that impacts on both partners. 

    Hope this helps and I hope things go smoothly and well for you x

  • Hi Worriedwife

    Thank you for that great advice  again ….yes it really helps as feeling very out of control as can’t get hold of the specialist nurse assigned to my husband even after several messages and an email  . I have taken your advice onboard. 
    Thank you for taking the time to  message 

    Caras