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Full body scan in two days.

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User

Posted 26 Oct 2019 at 17:50

Hi,

Yesterday I was told by my cancer clinic (urology department) that I have been diagnosed with an aggressive cancer which they hope is localised within the prostate. On the Gleason scale I am 9 (out of 10). All of this within 3 weeks of first visiting my GP on a whim. I have had and still have zero symptoms. My PSA count was 6.4. Everyone that I spoke to told who knew about these things said not to worry as it is really not that high and it has been caught in plenty of time. This view was thoroughly debunked by the clinician that did my biopsy. She said that there is no norm and that my prostate was relatively small and apparently size matters and also that my norm might have been 0.1 in which case 6.4 could be considered as high. There is no norm as we are all different.

The NHS have acted incredibly swiftly and cannot be faulted. In two days I have a full body scan to determine whether my cancer has spread and this is pivotal in what treatment may then be available if any. in 3 days I have an appointment with a surgeon and about a week after that with the Oncology dept.

Yesterday the clinician who gave me this news, and I appreciated that it was unvarnished because there is absolutely no point in sugar coating it, said that I had just a few days to decided on my course of treatment. I have the booklets I was given but I have no idea which route to take ie surgery where she told me that because of the cancer that I have, would have to be radical and would involve removing all nerves or should i go for hormone treatment followed by radiology treatment which could last years.

Yes we are all different but on the basis/hope that it is localised there must be others out there that have been faced with this dilemma. I could do with some thoughts on the subject and if possible advice. My problem is, it's urgent. Many thanks

User

Posted 26 Oct 2019 at 19:45

It isn't so urgent that you would really only have a few days to decide - I think the clinician who said this was a bit irresponsible as clearly, the appointment with the oncologist is outside the timescale before you even start. If it is indeed still contained, it isn't going to break out of the gland and run rampant round your body while you are asleep one night. However, the fact that you have been told it would be non-nerve sparing suggests that if it hasn't already broken out, it is very close to the edge - this means that surgery will undoubtedly leave you with permanent erectile dysfunction and a higher risk of incontinence as well as a higher risk of the surgery not getting it all.

Questions to ask both consultants include "what likelihood is there of this treatment needing to be followed by adjuvant or salvage treatment?" - the medics will have calculated this already, using nomograms that take into account your full diagnosis and the general outcomes for the UK, your city / region and your specific hospital. In reality, you can't compare surgery (get it over quickly) with HT/RT (it could take years) if there is a high chance that the surgery would have to be followed up with HT/RT anyway.

Just a note on the idea of cancer breaking out of the gland. Think of it like an orange - it may be that your cancer is already close to the edge so they need to remove the peel along with the fruit - the peel is where your nerves lie. Sometimes, you can look at an orange and the outside is already green with mould - fortunately it doesn't sound like this applies to you. In some cases, someone stuck a piece of wool into the orange and the mould creeps up the wool even though the orange looks lovely; removing the orange surgically may not be enough and so RT/HT is needed to mop up any leftovers. Unfortunately, it is entirely possible for the orange to be full of mould and even though the peel looks fine, the mould drips out of the orange and damages the other fruit ... that's your full body scan.

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

User

Posted 26 Oct 2019 at 19:53

I may have been in a similar position to you Indie. I was told that my cancer was contained but very close to the edge of the capsule and the surgeon opined that he would be unable to spare the nerves in my case. That tipped me towards radiotherapy. I agree with what Lyn says however - have a good long think about the option you feel most comfortable with and ask the questions of both the oncologist (who would be dealing with the radiotherapy option) and the surgeon that you want to ask. I don't think you want to be "bounced" into a decision.

User

Posted 26 Oct 2019 at 20:48

Hi Indie, sorry to see you on this site, but, you will find a great deal of support available.

Your diagnosis so far is very close to mine ( click on my avatar for the full details) I am 67, Gleason 9 with 60% coverage + perineural intrusion, initial PSA 7.3. I visited GP with a totally unrelated problem in July & was referred to Urology from then the madness began. mpMRI, TRUS biopsy followed by full body bone scan, neck X-rays,2nd MRI on my neck.

The Consultant initially offered me the full range of treatments, but later reduced these, it also transpired that I would have to have treatments at another Hospital.

I saw the Urology Consultant at my new hospital 2 weeks ago & we had a frank discussion, my preferred treatments of Brachiatherapy or HIFU weren't suitable owing to the location of the tumor & it's aggressive nature. After talking to a few people both online & at a Support Group, I didn't really want the possible side effects of HT or traveling to Hospital daily for up to 6-8 weeks probably in winter. Consequently, I am going into Hospital on Monday afternoon for robotic surgery on Tuesday morning.

I have changed my mind almost daily, but, after talking to one of the Nurse Specialists on this site I am happy with my decision, the key argument for me is that I have the fallback of more options if the cancer isn't completely removed by the surgery.

I must stress, this is my choice, dictated by my circumstances, everyone is different. If you haven't already, get the PCUK toolkit, talk to the Nurse Specialists, if possible go to a Support Group meeting, talk to your partner if you have one as it affects them as well. Read the posts on here & remember, there are no stupid questions.

Take care & message me if you need to ( although I might be otherwise engaged early next week)

Steve

User

Posted 26 Oct 2019 at 21:02

I am sorry that you find yourself in this position but do not despair. My oh was given gleason of 7/8 and surgery was ruled out.

Hopefully you can find a treatment plan which will give you many more years of "normal" life. Good luck.

Edited by member 27 Oct 2019 at 15:37 | Reason: Not specified

User

Posted 27 Oct 2019 at 08:18

Is the scan a bone scan?

You can order the comprehensive ‘Toolkit’ information folder below, it should be with you Tuesday or Wednesday. There used to be an option to instantly download it in PDF form, but that seems to have disappeared, for some reason.

https://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit

Best of luck.

Cheers, John.

User

Posted 27 Oct 2019 at 15:06

Thank you all for the replies I have received. I am genuinely touched that there are folk out there that take an interest in my dilemma. By the way, my scan tomorrow has been described to me as a full body bone scan.

I say it is urgent only because my clinician told me there is a 6 week waiting list for surgery and I really should not delay in making this decision because it is very urgent. I hear what you all say and I know it's my decision but nevertheless I do feel that I am being 'bounced' into making it because of the waiting list and my need to perhaps be on it. As I am seeing both the surgeon and Oncologist in the next week or so I will of course raise everything that you have all mentioned.

I am busy reading up on everything I can. I can see me eventually just tossing a coin. I am 67. I am still sexually active. Although I live on my own it is important to me. Yes, people will say what is more important? Your life or the ability to have a spontaneous erection? To me they are both important. Obviously staying alive trumps everything else but do bear in mind that all this has happened in the past three weeks and my head is spinning. I will take everyone's advice, read up on what I can in the short time available. So thank you all and I do appreciate that none of you can tell be what to do. It has to my own personal decision.

And Staggered, I wish the best with your surgery. It may be a little late for me but do let me know how it turns out.

Indie

User

Posted 27 Oct 2019 at 15:22

Nothing to stop you seeing the surgeon, saying yes to surgery (if it is still on the table) and then cancelling once you have seen the oncologist.

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

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