Paul Jackson's story aged 47

User

Posted 10 Mar 2020 at 21:42

Hi all, I'm new to this forum today. I'll give a little background to my story of prostate cancer. First of all, I need to say I had no symptoms whats so ever. So I would love for males reading this or have a male relation to asking their GP for a simple PSA test. Best way to do this is; ask for a well-being test (MOT) and ask them to test the PSA while they are at it. Below will explain why I believe this should be carried out for every male in the country.

OK, my brother was diagnosed with brain cancer in November 2019, unfortunately, his type of cancer was very aggressive and can not be cured. During his initial time in the hospital, the doctor asked him about his previous cancers, which I knew nothing about, he had previously been diagnosed with lymphoma and melanoma cancers (approx 10 years ago). The lymphoma was in his armpits, he drove himself to have it removed and ran a 10km with his daughter the day after (A view of the type of man he was). This conversation brought my armpit problem to the front, I had an itchy armpit for about 4 weeks. Once my bother was back home waiting for an operation, I visited then GP, asked about my armpit (it was nothing -change in washing powder), while I was there I asked for an MOT with PSA, due to my brothers previous and current condition and my dad's prostate cancer 10 years earlier at the age of 70.

The day after my blood test (Decmeber 2019) results showed my PSA at 3.4

I had an MPMRI scan 16th December 2019 (MPMRI scan is important to remember if you have a raised PSA, as this should be done first before you have a biopsy. As the 'MP' part of the MRI scan can potentially inform the consultant that biopsy may not be required. However, not every hospital in the country is following these 'new' guidelines.

Biopsy New years eve 2019, not as bad as the initial 'finger' inspection so don't worry too much about this.

Results of Biopsy; two nodules (lower/rear), 3+4 & 4+3 - 10% & 47% cancer found in the biopsy samples.

The worst part about waiting was the results for the bone scan, as I've seen in posts on this site, there is a possibility of cancer spreading to the bones, so a scan is advised. If you are reading this as a newly diagnosed person, please try not to worry about this, it is a very small chance it spreads. I got the all-clear on the bone scan.

After speaking to both removal and therapy consultants, I decided to go with the robotic nerve-sparing operation. Now here is another interesting point. Even if you have decided your route make sure you speak to everyone about every option. The beam/radiation consultant (similar age to me) told me that the week before he had been at a conference trying to convince his peers that beam/radiation/hormone therapy would be a good option (the case was a man of similar age to me and similar cancer). However, after the conference when all consultants were talking freely, he was asked by a junior doctor 'if it was him, which route would he choose'?, he replied 'Robotic removal'..........Reason - mainly due to the hormone therapy on young fit men, it can be difficult to deal with.

So straight to surgery, I went, unfortunately, I had to delay the surgery due to my brother passed away Sunday 16th February 2020. To whom I'm truly thankful for me getting my armpit checked out. If I hadn't I would still have cancer growing inside me without a single symptom. The consultant mentioned due to the location of my nodules at the lower/rear of the prostate, potentially could have grown for a very long time without any symptoms.

Surgery Monday 2nd March 2020, 50% saving of the nerves, apparently went very well.

Bedtime for the son now, my next post will try to give a little advice on what to do before the operation and the first initial week after. Then I will do a weekly post, along my journey, I just hope it helps someone.

User

Posted 11 Mar 2020 at 00:08

Thanks Paul, sorry to hear about your brother. Having to go through a bereavement and your own diagnosis at the same time is tough.

Getting this at 47 with a moderately large volume of a moderately aggressive cancer is all very unfortunate. I hope the recovery from surgery goes well, keep us posted.

Dave

User

Posted 11 Mar 2020 at 05:48

Hi Paul I had surgery at 48 and am 5 yrs on now. My thread is CHRIS J’s journey. It’s very long and I’m now incurable. Best of luck with recovery

User

Posted 11 Mar 2020 at 08:09

Dave64dig2018 - Thank you

User

Posted 11 Mar 2020 at 08:11

Chris J - I did read your posts before posting myself. I have some understanding of what you are facing, with the short experience with my brother. I suspect no words I say will make a difference to you. Just do things that make you happy. All the best.

User

Posted 11 Mar 2020 at 08:32

Meeting you consultants.

I decide to post on the forum to try and help people who have just been diagnosed with prostate cancer. I understand that all cancers are different and one treatment doesn’t fit all. Therefore, I will try and not advise on anything just pointers in getting to a place that you are happy with.

Consultants; meet all of them, even if you have decided on the treatment, it will not delay your treatment and you will be able to sleep better at night, knowing you have all the info and you believe you have made the correct decision for you.

Have the questions ready before you meet. AND do not be afraid to ask any question you want, remember this person is accountable for his/her actions, therefore you need to trust this person.

I asked the robotic removal surgeon:

Me: Are you the best at this procedure?

Surgeon: I’m the senior surgeon in this hospital.

Me: I didn’t ask that I asked are you the best surgeon at this procedure?

Surgeon: I was the person to start this procedure in the North East and I teach all other surgeons the techniques.

My thoughts: (at this stage if he would have said anything else I would have walked out and asked for the main person who would have given me this answer)

Me: I asked to see his hands, he held them out, they were very steady, I laughed and said you will do for me.

I understand most people will not be brave/brazen enough to ask to see the surgeons hands and to be honest, it doesn’t matter as its actually 5 robotic arms that do the work. But the point is, if you are not speaking to the main person in your particular area, then change surgeons. If the surgeons are not the man person in your area then go to a different area. It's your body and you need the best chance of getting better, so you need the main person.

User

Posted 11 Mar 2020 at 09:15

The Da Vinci (other cheaper robots are becoming available) robot compensates for any tremor, however minor, in the surgeon’s hands, so your questions should have included ‘how many prostatectomies have you done in total, and how many do you do in a year?’

My own surgeon says he wouldn’t send a friend or relative to any surgeon who does less than 100 a year.

Best of luck with your recuperation.

Cheers, John.

User

Posted 11 Mar 2020 at 11:10

John,

Very true, the post was only a sample of the questions asked in the meeting. I was trying to point out that as patients we should not be afraid to ask any questions that we feel will benefit us physically and mentally as an individual, pre & post-surgery.

Your consultant has a point, however just because someone carries out a specific action 100+ times doesn’t mean he/she is doing it correctly for the individual. Likewise, the data on websites regarding success rates are exactly that ‘data’ and this can be interpreted in many ways. The data doesn’t take into account individual needs and desires. For example, the main comment you will hear from all consultants and papers written on prostate cancer is; 1. Remove/treat the cancer, 2. Get dry, 3. Work on erectile dysfunction. They consider that direction in that specific order the most important aspect for all patients. Although we should not even discuss item one remove/treat the cancer as the anything else but the main point of having treatment, it could be argued that I for example as a younger very fit individual (with a wife 9 years younger) might prefer 100% erections and 10% wet, compared to 100% dry and 50% erections.

Therefore, this is the reason I asked the surgeon those and other questions, who is the best in the chain of hospitals, not numbers, not data, but who do the surgeons ask for advice? And if something goes wrong on the operating table, who do they call? This is the surgeon I decide to go with.

User

Posted 11 Mar 2020 at 19:00

Important to acknowledge that for a significant number of members here, the reality was that having met the main man prior to op, they never saw him again - he wasn't the person who did the op on the day and was never involved at post-op reviews, etc.

So I might be more interested in "will it actually be you that does it" than anything else.

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

User

Posted 11 Mar 2020 at 19:52

LynEyre,

Withoout doubt, for people new to the system, that is a very important question.

User

Posted 18 Mar 2020 at 19:52

Surgery Week

As mentioned I would put a few thoughts down on the post to help people who are waiting for surgery. Also, this is just what I experienced and I'm not trying to tell anyone what to do, but perhaps the things I experienced may help someone.

First of all, the surgery isn't as bad as you are thinking. The five small marks where the robot arms enter are approx 1cm long, the larger one just above the belly button is about 4cm. I didn't have morphine after the initialcouple of doses when I woke up, I only used codeine once and knocked the ibuprofen on the head after 3 days. I don't have a very high pain threshold, so I'm sure people out there will be fine. Initially, you may want to take what everything they give you, and that's an excellent idea, it relaxes you and it will help, getting some rest and sitting up/down. Once you get home you are in better control of your tablets, so obviously, just do what you feel. The only thing I can say is that the longer you are on codeine and ibuprofen the harder it will be to have a bowel movement. I would say out of the first 4/5 days that is the most uncomfortable I was (try to move my bowls). Also because there is an amount of gas put inside your belly for the operation, the trapped wind is uncomfortable and once you start bowel movements this also improves.

Catheter – Uncomfortable, the G strap they give you helps, however, try to loosen it in the shower so you can clean the jewels easier. Nothing much else to say about the catheter apart from, the removal on day 7 is also not as bad as you are imagining.

I’ll post about the week after the catheter next time, then it will be weekly updates. I’m currently on day16 after the operation and I’m feeling good.

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