So Yet Another Follow Up - Starting I think 2020 - Bizzar,

[Ern007]

Well those who know me will know not long ago I had scan including PET Scan for suspected Lung Cancer or TB.

In the end was put down to new scarring.

Many of you will know in 2020 I got Bladder Cancer symptoms - I was diagnosed with Bladder Cancer in site a year later and was treated with a TURBT to get rid on the tumor.

Follow up I was given was BCG direct to bladder - As far as I know it helped for a while. last Cystoscopy showed no tumor to be removed but -

I have Bladder Cancer in situ G2. That is a high grade cancer and on follow up on my year late Cystoscopy check - I was told you will get BSG again as soon as possible.

Cancelled and summoned to consultant again - The MDT had been consulted and they said no to BSG - I had to go back to consultant and ----

He said " I had high grade bladder cancer (so what's new) and how did I feel about having bladder removed - not a lot he said. Think about it but no, Have a course of BSG and see how you are, it seemed to work last time and I was happy to comply.

I was sent for blood teats and a CAT SCAN - Again my BSG was cancelled.

A 6mm nodule was found on my lung -

I was told it would go to Respiratory and if BC had spread to lungs, I would be given probably systemic chemo .

If the nodule was malignant and primary I would be referred to Respiratory or Oncology.

Well fair enough but i found I have an appointment for a CT Scan 1st April - Long while but they may be seeing if the nodule has grown. FAIR ENOUGH but-

My BC is still there, still G2 aggressive - no treatment at all at the moment and none since FEB 2022.

I don't understand why a 6mm module has suspended any treatment,

They are found a nodule on prostate but after a PSA test, no concern and it was low.

Point of that is. nodules are not always malignant.

[sassy59]

I really hope things get sorted out for you Ern and you stop being pushed from pillar to post. Pete has a hospital appointment tomorrow as he’s had blood in his urine and the last specimen was classed as “abnormal.” He will have a cystoscopy to hopefully see what’s going on. I’m really hoping it’s not cancer.

Take care xxxx

[Ern007 in reply to sassy59]

Thank You.

Sorry to here that about your hubby. I had first "cystoscopy" in the consultants room, I watched it on a monitor. it was a 'flexy cystoscopy and was not that bad.

Other conditions can cause blood in urine so it may not be cancer. Just a word about bladder cancer. Really if one had to be picked, it would be BC as it's easiest to treat. Another point is mine is high grade but that is a minority and most cases it's low grade and much easier to treat and less intervention needed.

I really hope like you your hubby is clear.

Good luck to you both, and all fingers crossed xx

[sassy59 in reply to Ern007]

Thank you so much Ern. I feel a bit more reassured now and hope you’ll be ok too.

Thinking of you. Xxx❤️

[sassy59 in reply to Ern007]

Pete is ok it seems Ern and taking a tablet long term to hopefully shrink prostate. Doctor didn’t want to risk any bleeding so cystoscopy not done.

Wishing you better days ahead xxxx❤️

[Ern007 in reply to sassy59]

Glad for you both - I am on Tamsulosin for my prostate, it does not shrink though, it's supposed to end the walks at night to the loo. Thank you I live in hope. xx

[sassy59 in reply to Ern007]

Thank you Ern. Tamulosin did nothing for Pete but hopefully it will work for you. He’s now on Finasteride 5mg daily so fingers crossed. Good luck to you. Xxx

[Ern007 in reply to sassy59]

I was offered Finasteride when I was a relatively a young man, I got enlarged prostate years ago but at that time side effect would not have been good. Tamsulosin has helped a bit but now I am older I would try Finasteride but I think I won't get it...Finasteride is also used help men who have lost hair regain some, but at much smaller a dose . I hope Pete finds that Finasteride has shrunk his prostate size, reduction was one reason it was offered to me...x

[sassy59 in reply to Ern007]

Petes willing to try it and yes the help for hair growth is 1g. Incredible! Xxx

[Ern007 in reply to sassy59]

Good luck to Pete and you both. I really believe his new treatment will help, xx

[sassy59 in reply to Ern007]

Thank you, I do hope so as he’s still bleeding. Xxx

[Ern007 in reply to sassy59]

I had bleeding problems - I hope you don't mind me saying this. I was told different things four times, at the end I saw my GP - I would if this bleeding persist see your GP. x

[sassy59 in reply to Ern007]

I’ll make sure Pete sees the GP if this carries on. Thank you so much for your help Ern. Xxx

[MoyB in reply to sassy59]

Reg was on finesteride for prostate. The top of his head where he is completely bald, grew fluff! When they stopped the finesteride, the fluff went with it! Lol!Xx Moy

[jackdup in reply to sassy59]

I hope all goes well and it isn’t cancer.

[sassy59 in reply to jackdup]

Thank you jackdup. Pete is ok and the doctor didn’t do the cystoscopy because he didn’t want to risk the bleeding again. Petes been put on a tablet to shrink the prostate so we’ll see how that goes. Cancer wasn’t mentioned thank goodness. We did worry though. Xxx

[eleanordigby in reply to sassy59]

Phew, what a relief! My husband sometimes says he feels on a rollercoaster & can never totally relax, as he never knows when some other problem might crop up. You must feel the same at times 😘

[sassy59 in reply to eleanordigby]

Very relieved I must say. I do often wonder what next. A roller coaster is a good description. Xxx🥰❤️

[jackdup in reply to sassy59]

that is very good to hear and I’m sure a big relief for both of you.

[Alberta56 in reply to sassy59]

I do hope Pete's ok. Love to both of you, Chris xxx

[sassy59 in reply to Alberta56]

Doing ok thank you Chris. On tablets now so🤞🏼xxx❤️

[Alberta56 in reply to sassy59]

My husband had blood in urine not so long ago, but he was given antibiotics and that seems to have sorted it. I hope Pete's tablets do the same. xxx

[sassy59 in reply to Alberta56]

Thank you Chris let’s hope so xxx😍

[Alberta56 in reply to sassy59]

🤞🤞🤞😘😘😘

[peege]

oh dear Ern, I dont know what to say. It's just awful that you've been messed about for a whole year.

I'm really hoping all goes well for you and sending my very best wishes. Peege ××

[Ern007 in reply to peege]

Thank's peege - I would not have cared as much, had they kept me on treatment while it was sorted, I even got an apology in January - Now it's worse x

[eleanordigby]

Dear oh dear, what a lot you’ve had to contend with. It’s dreadful to be treated like that when your health is at stake. I hope your treatment picks up soon

Can I just say, I thought your reply to Carole was lovely x

[Ern007 in reply to eleanordigby]

Thank you for your reply. I get a CT scan on April 1st so I guess/hope a new plan will be put into place. x

[eleanordigby in reply to Ern007]

I think those who deal with seriously ill people on a daily basis can sometimes forget how stressful it is. Maybe they need a reminder there’s a brave but worried man at the heart of all this x

[Ern007 in reply to eleanordigby]

Since treatment is decided by a team. MDT - Care is much less than when we had a consultant alone looking after us.

[eleanordigby in reply to Ern007]

You could be right, Ern. I’m waiting for a treatment plan from the MDT too 🙄 And when you’re not well you don’t feel up to chasing things up, do you?

[Ern007 in reply to eleanordigby]

Exactly - We seem to be as we can't win. For good measure I now have two MDT, one for my bladder. You could not make it up. I agree chasing up is not what we should be doing,

[Cloudancer]

So sorry to hear of your troubles.Sending gentle hugs and keeping you in my thoughts heart and prayers.I found that not knowing the diagnosis of my bone lesion was the most stressful part of the whole process.

Please let us know how you get on -we are all routing for you .

[Ern007 in reply to Cloudancer]

Thank you what a nice post and yes, I will follow up.

[NannyB1963]

firstly Ern , may I just say what a warrior you are … and we’ll done for not buckling under the stress.

I fully agree with you regarding “nodules” not all are cancerous, I understand they are treated at first as if they are , which in my case I was soooo thankful for🙏, it’s just the way you are sent for this tests, pet scan , lung function etc and no knowing what is going on in the between, the professionals who see this on a daily basis , really need to take into consideration the mental state of the patients… I was a complete wreck , I must say I am usually a strong character but my family didn’t recognise me , I was that bad .. on one occasion, I had an appointment with the consultant , my husband accompanied me, there was a lady in the room with him , I saw her badge my husband never, that was until about 5 minutes later,” cancer nurse “ to say my husband lost it . Appointment finished I knew my husband was going to say something, he stated the lady should never be in a room with that badge on and not introduce herself.

thankfully after a lung biopsy I got the diagnosis my nodule is a heamotouma ,

Hope you get what you deserve, sending you love

[Ern007 in reply to NannyB1963]

Thank you - I agree as I have Bladder Cancer with treatment halted until after the CT on my lungs it seems, I am not brave I am just stuck with it.

[Izb1]

It infuriates me to read just how much messing about and delays they have put your through Ern and all with no treatment. I do hope your scan for 1st April is out in place with new treatment plan, if not please push them for it. Love and hugs to you x

[Ern007 in reply to Izb1]

Thank you I did receive treatment 13 months ago which should have been repeated 3 times a year, well cancelled twice, no word no plan. I think they are waiting until after the lung CT Scan. My GP is getting fed up, if I contacted her she would push but now I may as well see what happens after April, I sure am going to inform my GP, she is annoyed. x

[Izb1 in reply to Ern007]

Maybe make a complaint to PALS, it really is not good enough to have cancellations and delays when you have cancer, it wont wait for treatment, its pretty disgusting x

[Ern007 in reply to Izb1]

I know what you mean but scary to complain. You never know how these people think. However my GP will complain for me, her words was if nothing done. she will want to know "why this is happening to her patient" she really is a star, I agree disgusting x

[Izb1 in reply to Ern007]

I know how you feel Ern , my Mum was the same and was scared that if she complained the doctor would strike her off the books so left it to me lol. Let your gp do the complaining for you then, it sounds like she knows what she is doing and is on your side. Take care x

[Ern007 in reply to Izb1]

Yes she really is good. I moved this village 5 years ago, and found the practice brilliant. x

[watergazer]

Hope things get sorted for you soon. X

[Ern007 in reply to watergazer]

Thank you, I know what I have thus far, all I want is a plan x

[CDPO16]

I hope that you get on a straight forward path soon Ern. It's a wonder that you have kept your sanity through all this. Wishing you well xx

[Ern007 in reply to CDPO16]

Thank you, I think without planning for garden and painting, I may have been insane by now with these clowns. x

[Alberta56]

Oh dear- how can so many 'experts' have made such a mess of your treatment? I hope they can get get it organised soon and not leave you in the lurch, in the dark and generally badly treated. Best wishes to a very strong gentleman. xxxx

[Ern007 in reply to Alberta56]

Thank you for your kind wishes. The trouble being so called looked after by a team MDT - is that they come from different parts of the profession - How can they agree without delay, my consultant wanted to treat me, but he fell into line.x

[Alberta56 in reply to Ern007]

Grr! Don't they do joined up thinking, and even perhaps listening to the patient occasionally. Love and good wishes, Chris xxx

[MoyB]

Thinking of you, Ern, and sending virtual hugs. ((((( ❤️ ))))) xx Moy

[Ern007 in reply to MoyB]

I just saw this reply MoyB - I spotted that after a year, things did improve, well I got the treatment I wanted and my cancer was shown to have dropped to low grade again, on feb 14th this year, not again I am waiting for treatment. xx

[MoyB in reply to Ern007]

🤞Fingers crossed that you get the treatment you need sooner rather than later. Xx