The Next Step: PET Scan and Radiotherapy
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- čas přidán 6. 06. 2024
- Hi, todays video is a day after my meeting with my Oncologist regarding my rising PSA levels and what we are going to do next
There is some not so good news and some pretty exciting news coming up.
The rollercoaster that is advanced Prostate Cancer continues, but above everything it could be a lot worse
Thank you for watching this video, I’ve been making these videos as a vlog sharing my journey through Advanced Metastatic Prostate Cancer.
My world literally fell apart on Sept 15th 2021 when I was diagnosed with Advanced Prostate Cancer which according to my Oncologist is incurable (although ive never accepted that) Questions such as how long have I got left how bad is it , in fact, a whole host of frightening thoughts, where sudennly swarming around my mind and exploding at opportune moments when I felt most vulnerable.
If i were to be honest, I was lost and lonely to begin with. People don’t know how to deal with someone who has stage four cancer. It’s a taboo subject. I honestly didn’t know who to turn to for help. It can be a dark place and I only wish I could of found a channel such as this to help me through those early days.
I started writing a blog whilst I was in hospital and recovering at home after the initial treatment phase.
I then decided to make this vlog because it seemed a better way to get my story out there. I want to provide a channel where I would continue telling my story for as long as I can and invite comments from others that can also help and share their own experiences.
Cancer can be a lonely place, and I hope this channel will help someone else who may be a bit lost and feel alone whilst dealing with their own diagnosis and experience.
Nothing is ever as bad as you think it will be, and that seems to the case so far with my experience with Prostate Cancer.
Thank you for watching. Please comment and subscribe if you feel like it, and please share the videos with anyone you think may find them helpful
Woody ❤️
Hi Woody I watch Dr Mark Scholz at PCRI, this guy 30 years Oncologist prostate only, nothing else, he is the only Dr I have heard dare to mention the words cure rather than control, the path you now on is exactly what he does, PSMA pet scan and radiate the offending areas, Cock ups in system , NHS in big trouble, overwhelmed I would say, good luck Woody, keep us posted, PS ask your Oncologist if she fancies a transfer to South Yorkshire, we could do with someone enlightened like her up here Phil
Mark Scholz I find very helpful
I wish he were my Oncologist. Phil
I guess I’m lucky to have her , it’s a bit of a lottery. She was all for chemo before my latest scans, her expectations were a lot worse than actually is happening hence the change of treatment. My oncologist has never said cured she says my particular type of cancer is aggressive and incurable according to the biopsy results , I’ve always said that if one person can heal then so can I. It’s so important not to accept it’s incurable 🙏
I wish could find a Dr. Scholz in my locale.
Hello Woody. I can understand your frustration in regards to appointment and such. Second time around for treatment for me after 12 yrs. I have a story for you as well. When i went back after 12 yrs to get my legs molds made for radiation, i saw the same person that made my last set of molds. She saw this on the chart, and she was amazed that i remembered her name. She told me i had no prep like last time (full bladder) and just show up. Well on the day of radiation, the technician said that i had to have a full bladder (that is for radiating the prostate bed, so the bladder moves away, and doesn't get fried) I told the tech that i had no prep involved, as my radiation is for a single lymph node. They sent me home, as their info and calubrations were designed for prostate bed radiation. I said the same thing you said, what if i was old, and what if the mold tech hadn't told me i had no prep. Good news. Next day my oncologist was there i heard, watching the radiation session. Stuff happens..you're not alone. Cheers, Carl
Woody this appears to be very good news, and I'm so happy to see you are in good spirits! Also you are advocating for yourself within your NHS system, ensuring you get the treatment you know you need and helping them to avoid mistakes. It's the only way to go. We all have to keep on top of understanding our treatment and ensuring it's done correctly.
In our public system in Canada (there is no private system -- in fact it's prohibited) we also have limitations on access to things like PET scans (not enough machines, technicians or money to pay for them) so it's great to hear you will get one. PET is a very advanced technology.
One year after completing radiation and ADT I had my regular 3-month PSA test this week and it's down to 0.01 for the first time since the initial two years in 2014-15 after my prostatectomy. Almost a decade. Radiation and drug therapy work well on prostate cancer. Sometimes the side effects are difficult, but they're manageable. Many of us have been given so many extra years to enjoy life. Just keep going. There are many good and great days ahead of you! Cheers, Reid
Thank you Reid . It’s interesting to hear that in Canada private health care is prohibited I had no idea.
Yes, I’m grateful to be offered the PET scan and the targeted radiation.
I’m glad your PSA is so low and long may that continue.
I guess we are lucky to be living in an age where treatment for Prostate Cancer is so advanced and getting better all the time.
It’s worth putting up with the side effects to see my young children developing into beautiful young adults ❤️
Best of luck for next few weeks. Iam on a similar journey by the sound of things. Always encouraged by your talks. Mind yourself, god bless Phil.
Thanks Phil
Good to hear your doing OK. I start chemo next week. This cancer stuff stinks for sure.
It does and I wish you the best in your chemo treatment 🙏
I hear you brother. I've been on my cancer journey for about 3 years and the most astonishing thing I've learned is how often these medical providers screw up. I had profound respect for the Doctors, and still do, but I learned you have to watch and question every move they make. It's a big medical machine here in the US, and the tendency is to push appraisals and decisions down to PAs (Physician Assistants). In my case, one PA made an error that severely degraded my quality of life for about 6 months.
You MUST research. You MUST seek second opinions. You MUST be aware that only YOU are ultimately responsible for your own well being.
Sadly I agree, and I’m sorry to hear how it degraded your own life I can see easily how this happens. I’m wishing you well for the future.
Woody- my mets also “disappeared” on the mri. So I decided to get a pet scan privately. They wouldn’t give me one on the nhs . I knew that it had a good chance of throwing up something as it is so much more sensitive than the MRI. I was therefore mentally ready when they said that the mets were there. A bit of a bummer but at least I know what is going on. On my last meeting with my NHS oncologist he agreed to give me another pet scan in 6 months time so we can compare it to the first one and see how it looks. ( so I save the £3.5K whoopie!) good luck with yours-we are all different and our disease is different so I hope you have a clear scan of your old mets. Keep the videos coming-they are a big help
Thank you Derek, I’m a bit nervous about the scan as I’ve had a few pains lately that haven’t been there before . Is it all in the mind maybe ?
@@Livingwith-prostatecancer yes it is a
b!tch . You notice any small ache or pain and you think it’s from the met. Good luck with your scan
I think you are being to kind on your words for the NHS, and the quality (or limits on quality) and on the equally or greater importance on the timeliness of care. These deficiencies are not unique to Britains health care system, but are a fixture of virtually all national run health care systems. Best of luck with the results of your next appointment. Carry on.
I think the NHS is amazing in many ways but clearly it’s broken when it comes to the administration of its patients.
@@Livingwith-prostatecancer Well, is not taking care of its patients it’s number one function? And it is broken? I guess I am lucky to have very good private health insurance (which I pay a tidy sum for) here in the USA, that has allowed me numerous options in evaluating and treating my prostate cancer, with very short wait times for diagnostics and treatments. I hope your PSMA (PET?) scan goes well. I may have commented in a previous video of yours that I was lucky to have my PSMA PeT scan confirm that my cancer (Gleason 7, 4+3) was confined to my prostate and even more lucky to find out about an unknown Aortic Aneurysm that needed surgery. I joke that my prostate cancer saved my life since the aneurysm would have “affected” me long before the cancer. Again, good luck to you and I appreciate you sharing your treatment journey.
Thank you for the encouragement
You are very welcome 🙏
Great to hear that you've had a bit of positive news - I feel that you have been just as instrumental in your recovery as the NHS has with your attitude, diet and mind set. Looking forward to hearing more good news.
Thank you, I’m looking forward to hopefully telling you more good news
Hiya, I recently had 20 sessions of radiotherapy to target the cancer within the prostate. Pleased to say it worked. My latest PSA 0:22.. It's been a 5 yr journey for me. Stressful at times. But it has been worth it. Hang in there Woody. You'll be fine. Good luck.
Thank you Keith it’s always helpful to hear what others have gone through. I did have radiation when I was first diagnosed so this will be interesting to see how it goes
During my 4 year PC journey there’s been unfortunate mistakes. Keep strong Woody.
I think there’s many of us that have had some unnecessary mistakes along the way
Woody...your shared frustration seem to be normal....I have cancer and the quality of my care is directly related to my advocating for myself. Good job Woody. Remember if you're lacking confidence, look for other services somewhere else. Human error is not always easy to accept.
I think human error is difficult to cope with, especially when you are dealing with possible life affecting mistakes
US here. Those errors happen even more in for profit medical care. Lots of confusion in the medical system trying to increase their profits . I wish we had an NIH.
I guess it’s the same no matter what kind of healthcare you get. I do think our NHS is incredible, but it’s overwhelmed and braking down , I hope it can be repaired.
Good luck woody keep fighting
Thank you
Best wishes always Woody
Thank you 🙏
I think having cancer brings us to have realistic thinking. Hormone therapy doesnt kill cancer, makes it sleep for some time only, chemotherapy mostly doesnt kill all cancer cells, radiation therapy is relatively good option for cancer spots. Lutetium helps for about half a year, so in my small country Slovenia every day one or two men die of prostate cancer. In spite of going through antihormone..chemo etc therapies. Therefore having netastatic prostate cancer is not an easy burden. And every NHS has not money to pay for all possible therapies.
And yet Dusan there are still people that defy the odds. For some reason that isn’t properly known there are a small but growing number of people that go into what is called spontaneous remission. As long as that is the case I believe we all have a chance of healing as long as we make adjustments to our lifestyles that cancer can’t thrive on.🙏
I've always found that once you get to treatment the clinical stuff is good but the admin is terrible. Recently I had to travel 20 miles to hospital to pick up a prescription for UTI - they could not send it electronically to either my pharmacy or instruct my local GP to issue one, this in 2024, so I had to travel to pick up a piece of paper!. Later on I received a phone call from Radiology asking why I had missed my appointment. I said I had no appointment, no phone call, no letter, nothing. The Radiologist said she was not surprised and a booking was made for a week later. This is why the NHS wastes so much money- the admin is crap,
Sadly I have to agree with you it’s got worse in the last year
Omg
Sir what your psa results
Dont believe too much in NHS, lately I have lost my oncologist, and have at each meeting another person which is terrible.
I find this very poor treatment and can’t understand why. I visited my doctors in December 2023 to ask for a PSA test. Results within weeks…..MRI before the new year…..Biopsy in January…….told I’ve got prostate cancer in February….put on Hormone treatment……started radiotherapy beginning of June ….3 more treatments left. The treatment and support has been brilliant throughout. The NHS can do a first class job and should do. If it works at one Trust it should be copied elsewhere but the system is not connected so it fails. I’m just grateful that I’ve been so lucky.
Personally I’ve been treated mostly well by the NHS it’s just some individuals that let the side down
My GP when it first started didn’t offer me a PSA test despite all of my symptoms, it took 8 months to get my PSA tested to be fair I had never heard of it so didn’t ask but my GP could and should have at least given me a blood test , he was convinced it was sciatica, I’ve met a few other men who have identical stories as mine. Anyway it’s water under the bridge and I don’t want to spend too much time wondering what might have been. I’m glad you have had a very good experience with the NHS that’s good to know