Very early days pre-diagnosis

Ally52 5 days ago

7 replies
143 subscribers
371 views

For a few weeks my husband has had a problem with his waterworks and a small amount of discomfort when peeing which the GP suggested was a water infection, prescribed antibiotics but nothing improved so the GP had a digital feel around with nothing discovered. He was sent for a flexible cystoscopy as a precaution as there were traces of invisible blood in his urine sample. This showed a few red angry looking patches in his bladder but two doctors at Urology both said it didn't look cancerish. More precautionary tests booked for him, MRI and Scan, both of which were completed within a week and he was booked in for a rigid cystoscopy today under a general anaesthetic.

However after attending his pre-op assessment (where the nurse commented she couldn't see where he was booked in for the procedure but here he was for his pre-op so......???) on his way home he had a call asking him to come in to see the urologist asap so that was booked for the next day. Obviously very worrying time and not much sleep for either of us as we both had multiple bathroom trips and whirling brains to cope with as well.

We both went to see the consultant and were told that his MRI had shown what looked like a mass on one side of his prostate, his PSA level was high (I think they said 40, John thinks they said 80 but the consultant said it sounded high but he saw men with numbers over a thousand.) He also said there was evidence of something that looked iffy (my word not the consultants!) in John's pelvis which made my heart sink. So we are waiting for a date for a prostate biopsy and then a date for the results/diagnosis mid January. We also discovered via the consultant making a phone call that his bladder cystoscopy had in fact been cancelled as not necessary although the message hadn't gone through the system.

Until the next appointment John is on hormones, waiting for any side effects to set in. So far so good 4 days in! However he does feel off his food and a bit nauseous, with a weird taste in his mouth which has been there for a few weeks so pre the hormones. The consultant suggested it might be a calcium deficiency or just his body recognising that something isn't quite right with normal service! He has no indigestion or pain anywhere and no lumps or bumps felt in his stomach (he popped back to the GP last week who had a quick feel) No vomiting and it's very mild, he carries on with life and makes himself eat. If it wan't for this plus the trips to the loo he says he'd feel fine.

Anyway, I'm not really asking for any advice as it's such early days and we have no diagnosis to focus on yet but we both feel resigned to it being cancer but not a death sentence yet, or at all. Worst thing was telling our daughters who both live in Australia as we knew they'd panic but before they went we had an agreement to always share news with each other, good or bad.

Phew, what a long post but it is so helpful to splurge it all out so thank you for listening and hope you are all having a good day

mstev2 5 days ago

Welcome to this group. We are sorry that you have to be here, but glad to see you.

You are going through what is absolutely the most worrying time. I recognise all the emotions.

The hormone therapy quite often has very mild side effects so, hopefully, they will continue that way for you. You may want to ask your doctor about Calcium/Vitamin D tablets.

The biopsy is not fun, but was not as bad as I imagined (I'm ahead of you on the diagnosis front).

The hormone therapy is highly likely to stop the cancer in its tracks. It can't cure it, but it gives the doctors the time to come up with the right plan.

Learn as much as you can about each next step - from this website, Prostate Cancer UK, and Cancer Research UK, but not Dr Google.

You will find it all strangely reassuring, once you get into it.

Alwayshope 5 days ago

Hello Alison Ally52 and welcome to the family from another wife. The start of the journey can feel frightening and overwhelming as you are catapulted into a new world with all its uncertainty and terms to get to know. My husband is also a dinosaur as far as the internet is concerned, plus men often handle the potential diagnosis differently to the partners, but I found it helpful to get a basic understanding of what we were up against in terms of diagnosis and treatment. There is a very good book you can download for free and this will help you have a more informed discussion with the experts.

https://issuu.com/magazineproduction/docs/js_prostate_cancer_guide_for_patients_ezine

Prostate cancer is usually slow growing and John has already been started on hormone therapy which will quickly deprive the cancer of its food and gives time for the experts to come up with a plan. Keep a note of names and contact numbers plus a summary of conversation as you might need them for reference. The other thing to say is that prostate cancer can be treated in a variety of different ways no matter how bad it might sound to start with and there is a lot of work going on to improve protocols and effectiveness of treatment. It does take the body a little while to get used to the hormone therapy so if you are worried about anything then just ask the members here but the first bit of advice everyone will tell you is to encourage your husband to get as fit as possible, try and introduce some resistance exercises to combat the muscle loss if John has been put onto Androgen Deprivation Therapy.

Please keep asking questions and feel free to join in with any of the discussions.

Millibob 5 days ago

Hello again Alison (Ally52)

Another welcome from me - I have put up a reply on your other thread and can't add much to the two replies above suffice to say feel free to ask any questions. You are starting out on a journey with John and no question is to trivial so please ask anything you are unsure about.

Best wishes - Brian.

Community Champion badge

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.

David2017 5 days ago

Hi Alison (Ally52 ), you are at a horrible stage, imagining the worst but hoping for the best. If it turns out to be PCa then the HT is exactly the right start and there is no rush for treatment. The PSA indicates a problem but isn’t a brilliant measure to judge what is going on. Unfortunately waiting for the biopsy and then results is really hard. Try not to over stress (easy for me to say) as many of us have had a bad diagnosis and are still receiving brilliant treatment years later with more options opening up all the time. You will have loads of questions, so if at any time you want to know anything, don’t hesitate, the team on here are great. Best wishes, David

Ally52 5 days ago in reply to Alwayshope

What a great resource that book is! Thank you!

Alpine Wanderer 4 days ago in reply to Ally52

Hi Ally52 - well done for giving such a detailed introduction! Keep doing what you’re doing and we will try to give you answers (or steer you towards questions to put to your consultant). Notice I say your consultant not your OH’s consultant: this is very much a team effort. You said that your heart sank when they said that there were shadows in the pelvic area. Remember that Johns body is reacting to whatever is going on (as you say, probably cancer) BUT this does not mean that he is not curable. His symptoms are relatively mild and his PSA is 40 (or possibly 80) which is still not too high. Millibob had an introductory PSA of 182, for instance, and he is on a curable pathway. As for the not eating / feeling nauseous etc : many of us (including me) had that during diagnosis due to worry (I lost half a stone and I only weigh 11 stone!). This time will pass. In the meantime, read lots of members bio’s on here to get a feel for the different pathways that are being followed. Also, take a look at the videos on PCRI.org. This is an American site, but the oncologist Dr Mark Sholtz has spent a lifetime working with PCa patients. The videos are soothing and reassuring- and quite addictive! If you check out my bio, you’ll see that I’m 18 months in and I feel that the NHS has been fantastic. Now that John has started hormone therapy, the time pressure is definitely off as the cancer will have been put to sleep. Remember too, that these lesions will probably be 10 - 15mm in size and would have been slow growing: todays accurate treatments of radiotherapy can certainly destroy such lesions in the pelvic area, so let’s hope that the cancer has only managed to progress that far. Even if not, the second and third line treatments for “treatable” cancer are very effective. So, in summary, keep that worry and panic under control. John has already started treatment to tackle the cancer and stop it in its tracks whilst the good old NHS work out the best way forward. Within months my travels had returned to normal (My wife and I are both international hiking guides) so you both still have everything to look forward to. There, as your introduction was lengthy, I have reciprocated with a similar one! AW

Millibob 4 days ago in reply to Alpine Wanderer

Hello Alison (Ally52)

Just to add to Alpine Wanderer's cracking post above:

* Yes my initial PSA was 182 - I was on a "curative pathway" and after 3 years treatment - I am now off treatment with a PSA of 0.29 and feel amazing.

* I had a "shadow" on my pelvis and had Radiotherapy to the Prostate and the Pelvis. (you can read my story by clicking on my user name or avatar).

So - positive thoughts and we will get you both through this.