Slight rise in PSA

User

Posted 23 Feb 2022 at 00:55

My mum & nana both died of GBM - it is a terrible, brutal cancer. Thinking of you all x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 23 Feb 2022 at 08:12

I lost my brother in law to a gbm4 10 years ago so appreciate what my sister is facing and what your family have endured.

Thank you everyone for your kind answers and support.

User

Posted 10 Mar 2022 at 22:39

My husband had a PET scan last Wednesday 2nd March and has contacted the hospital for the results. Is it normal to be told to wait to discuss the results at the next oncology meeting which isn't until the 29th March??

The wait is unbearable!! We already have been prepared for news of Lung cancer or pca mets :(

User

Posted 11 Mar 2022 at 00:26

I don't really know what the normal protocol is. I think it quite possible that the images have not been assessed yet it is just over a week since the scan.

I think you will have to just learn to manage the anxiety. I would ask these two questions:

How will knowing earlier than 29 March improve things?

Even when you do get the news how will you be able to change the outcome, whether it is good news or bad news?

So I will repeat what I say to many people on this site. There is no point in worrying about something you can't change. You will just have to wait for the results.

Dave

User

Posted 11 Mar 2022 at 01:28

The images are taken by a radiographer who (usually) sends them to a radiologist to be interpreted - then the interpretation goes to the oncologist for a full diagnosis. I think with two oncology departments potentially involved, that could slow it down as well. Even if they were available, getting the results now would only mean that you have a bit of information without any context or indication of what the treatment plan might be?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 11 Mar 2022 at 08:11

It's normal round here, consultants still have their fiefdom and you must comply..

Not sure I would want to interpret my own scan results so in this case it's probably best to get it from the horse's mouth.

User

Posted 11 Mar 2022 at 21:58

An appointment was received today in the post with the respiratory specialist for the 22nd March so at least it is a little closer and less of a wait for the results and potential treatment plan.

I will take it that the news cannot need immediate action if they have not pulled him in earlier. 🤞

Edited by member 11 Mar 2022 at 21:59 | Reason: Not specified

User

Posted 22 Mar 2022 at 18:57

Just an update the PET scan has shown a definite area of concern in his lung along with a couple of lymph nodes in the chest. A EBUS biopsy is required to identify if its prostate spread or a primary lung cancer.

More waiting until we get a full diagnosis and staging so we can have a treatment plan.

Edited by member 23 Mar 2022 at 08:50 | Reason: Not specified

User

Posted 18 Apr 2022 at 10:33

Just an update after my husband had his EBUS (lung) biopsy. We received a call 6 days after the procedure to meet with the respiratory specialist the next day, which was last Wednesday. We were hopeful that it would lead to finally receiving a diagnosis and treatment plan.

We attended the meeting to be informed that they only biopsied the affected lymph nodes in the lung/chest area and not the lesion! This confirmed the results of the previousq PET scan that cancer was present. Unfortunately the samples were not good enough to identify if it was prostate or lung cancer so another PET scan with a different contrast has been requested to confirm the type of cancer.

It's so frustrating and worrying that it is delaying any treatment plan.

We hope the PET scan happens within 2 weeks and shows exactly what cancer is in the lungs. At least the enzauldamide has reduced his psa to 4.3 so heading in the right direction.

We have a holiday booked for the 13th May to Eurpoe, so it's going to be tight to decide if we need to postpone it. We have no travel insured for Karl as it expired 2 years ago when the holiday was booked to take place.

I now need to attempt to gain insurance whilst he is under investigation., any insurance advice would be greatly appreciated. I did believe we would have had a diagnosis by now to have bought the holiday insurance :(

User

Posted 11 May 2022 at 15:09

We met with the respiratory consultant yesterday to received the results of my husband's last PET scan...its been a journey since December when his PSA first started to show slow but significant increases. He has a primary Lung cancer and not prostate spread, whilst I'm gutted he has yet another cancer to fight, I do feel relieved it's not prostate spread to the lung as he seems to have a better chance of beating the lung cancer

Surgery will happen quickly to remove the lower left lobe and affected lymph nodes with Chemo infusion to follow once he recovers from the surgery.

He has a hard journey ahead but we are up for the fight back to good health.

Here's hoping the enzauldamide works wonders for the prostate spread and he remains stable for many years.

Moozel

User

Posted 11 May 2022 at 16:51

Hi Moozel, sorry to hear that your husband now has primary lung cancer. Hope all goes well with the operation and chemo. As you say, another hard fight ahead, stay strong and remember to look after yourself too.

All the best to you both.

Ange x

User

Posted 11 May 2022 at 18:07

Sorry to read this Moozel, I hope the treatment sorts out the lung cancer and that your husband copes well with it.

Ido4

User

Posted 20 Jul 2022 at 20:17

Just an update...

We met with my husband's surgeon yesterday after a long 6 weeks wait post lung lobectomy to find out the results from pathology. I'm pleased to say the results were better than expected. It was definitely Lung cancer in his left lung and the lymph nodes previously thought to be involved were negative.

We were apprehensive that he had a mix of prostate cancer and Lung cancer inside the Lung & chest lymph node.

4 lymph nodes were removed along with the cancerous node in his lung so he is all clear. ❤️💙 Just waiting to see if he is having some simple Chemo or will be under surveillance. We just need his prostate cancer to become stable for as long as possible now 🙏🙌

Bloods done so waiting for his new psa results in the next day or so...fingers crossed the Enza is doing amazing things for him 👏

User

Posted 21 Jul 2022 at 01:55

Hi Moozel, I'm glad progress is being made. with the lung cancer out of the picture. It may be easier to work out what the prostate cancer is doing.

Dave

User

Posted 21 Jul 2022 at 11:22

That’s really good news re the lung cancer treatment. Hope the prostate cancer is dealt with soon.

Ido4

User

Posted 21 Jul 2022 at 20:10

Well I spent last night caring for my sister and her young son as she is palliative now for brain cancer to wake up and find out that my husband spent the night in A&E in severe pain.

Bloods taken were clear, xray was clear but CT scan has shown a adrenal gland has enlarged since his last scan a few months ago. I'm hoping it not pc related...I cannot help but to link his pc to any changes in his health. I just hope he gets a break and no more bloody illnesses are found. We were just jumping for joy after his meeting with the Lung specialist. :(

Edited by member 21 Jul 2022 at 20:10 | Reason: Not specified

User

Posted 21 Jul 2022 at 20:25

Yes, we attribute all illnesses to prostate cancer but they may be unrelated. I hope things get better for you.

Dave

User

Posted 21 Jul 2022 at 20:43

Me too...Dave

User

Posted 31 Jul 2022 at 19:07

Where do I start....

Karl was diagnosed with stage 4 Prostate cancer in 2020 it knocked us for six. He did the standard treatment and did well for the first 12 months before progression started, new drugs added to his treatment and now stable again. 🙌

He was then diagnosed with a possible primary Lung tumour with 2 Lymph node involvement or prostate spread in May 2022 and had a lower left Lobectomy with 4 Lymph nodes removed in July.

The pathology came back after chasing the results for more than 6 weeks and on meeting the surgeon we were told he had a low grade lung tumour and no lymph nodes had cancer (T1b N0 M0). We found this confusing as we were ecpecting low grade tumour with cancer in 2 nodes from his previous biopsies., happy days....We were overjoyed with the news of a early diagnosis and a quick response with treatment and told he was clear of cancer and to get on with our lives and hope for a good run before more intervention is required.

On Thursday our World was turned upside down his lung doctor was also confused so had the tissue retested in the hospital labs....the out-sourced labs had incorrectly tested the samples....and he has been diagnosed with a rare and aggressive Neuroendocrine Large Cell carcinoma with spread to his adrenal gland, new lymph nodes and possibly his liver. Scans need to be done next week to rule out any more spread.

New stage is expected to be T3b N2 M1. He will do 4 cycles of Chemo and been told he may have 12 months if the chemo works.

How the hell do we go from cured with Lung to a terminal diagnosis......I'm just filled with sadness, grief and anger over our stolen future 💔 😭😭😭

Im still hopeful that Chemo will work and he is able to be offered immunotherapy but the type of cancer is so rare that not many trials available:(

Thank you everyone for you advice and support over the last 2 years but it appears that Karl will die with pc and not because of it 😢 is just so sad and unjust

Edited by member 31 Jul 2022 at 19:17 | Reason: Not specified

User

Posted 31 Jul 2022 at 21:49

So sorry to read this. It is very difficult when news about histology changes like this. I don’t know what else to say except I am thinking of you. I really hate this disease.

Ido4

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