I'm interested in conversations about and I want to talk about

Know exactly what you want?

Show search

Notification

Error

My Long Time Partner Has Just Been Diagnosed

Email this conversation Print this conversation

User

Posted 08 Dec 2014 at 00:32

Hi,

My long time partner has just been diagnosed with prostate cancer.

He had a biopsy prior to us spending time abroad at our holiday home.

My partner phoned the uk hospital to get his results over the phone.

We are now back in the uk where he had his first discussion with someone (a prostate surgeon)

at the hospital (Friday) ... who wants a decision on Monday from my partner on the type of treatment

my partner wants to persue.

Whilst Im so pleased that the hospital are reacting quickly ... I feel that this is just too quick.

I had been reading about the disease and come to the conclusion that Proton Beam Therapy is

a good route ... my partner meanwhile has appeared to be slow off the mark at reading up

on the different treatments, but it appears that he too may be coming round to the same conclusion.

For me, it just feel as if neither of us is being given any time to make a decision.

Prior to any tests for prostate cancer my partner suddenly started getting ED also he had a couple of urine infections

which lead him to ask the doctor to test his psa (7.6). My question is ... is it likely that the prostate cancer itself is causing ED

- is that a symptom or something that can alert you that you may have prostate cancer ?.

Could we hope that successful prostate cancer treatment would mean that everything would correct itself,

or should we assume that treatment we choose could be based on the fact that ED is here to stay and that we should be looking more at

treatment that is less likely to cause incontinence. (My partner has a Gleeson of 7 and 4 out of 8 markers on his biopsy were shown to be

cancerous ie. all cancer is on one side of the prostate. T2 (all cancer is still within the prostate).

Sue

User

Posted 08 Dec 2014 at 11:39

Hi Sue,

The decision to go for one type of treatment rather than another is a very personal one. Some people have great fears of surgery, whilst others are keen to have the thing taken out a.s.a.p. It's nigh on impossible, in advance, to know who will have what side effects of what treatment, so for some RT is hell and for others reasonably fine. Some have better experiences of surgical interventions than others.

Another factor may be where which treatments are available and how travelling to and from a location might impact upon both the patient and others.

Everyone who makes that decision will have their own answer and their own reasons for that choice.

Patrick

Life is a journey. You can't move forward on a journey AND stay in the same place.

User

Posted 08 Dec 2014 at 13:36

welcome to the group Sue it is a short time to decided I decided on a radical prostatectomy with the view I would have a second chance with RT if any cancer was left, I had open surgery last Wensday and came home Saturday so not much more than those that had key hole , it is a big op mine over 3 hours but I felt fit and well and so far recovering well as for ed I will find out later as everybody is different other members will have already been through this and hopefully post replies. Andy

User

Posted 08 Dec 2014 at 14:02

Sue,

I don't quite understand why a decision is required so quickly which is putting a lot of pressure on your partner. Have all the options that are open to your partner been explained to him and was Proton Beam one of them as to the best of my knowledge it is not available in the UK other than for low powered use to treat eyes.

Where there are treatment options, careful consideration should be given to potential side effects and what if the primary treatment does not work. My own feeling is, particularly where the cancer is contained within the capsule, that the best chance of eradicating it permanently is to have the prostate surgically removed. If a few cancer cells remain in the margins RT and HT can then be given to complete the job. Unfortunately, the risk of incontinence to a varying degree up to permanent incontinence for a few men is greater if the surgical route is taken. As I have personally experienced, various forms of RT/Hadron therapy may well eradicate the cancer but it is still possible for new tumours to grow in the Prostate in due course. There are a few surgeons that will remove a Prostate after radiation but this makes an already delicate operation more difficult with increased risk of side effects. Generally this translates into most young men where appropriate having surgery whereas old men have Radiation. HIFU (High Intensity Focused Ultrasound is another possibility for some men. It is now approved by NICE and may be repeated unlike Radiation but long term effectiveness has still to be established.

Edited by member 08 Dec 2014 at 14:03 | Reason: Not specified

Barry

User

Posted 08 Dec 2014 at 17:18

Man with a PC,

Proton Beam is certainly available at Coventry (University Hospital) where a friend of mind was treated very successfully with it a few months back. I suspect that excellent centre is not alone now.

OC in Northants

User

Posted 08 Dec 2014 at 18:40

You both have to think the way forward, there are many options available.I had Robotic surgery 4 yrs ago, I had a MRI scan after my bi/op

before options were given. My gleeson level was 7, 3+4 right side plus the cancer had extended outside of the the prostate and spread to lymph glands with a PSA of 9.6. If you go the RT route you may well be unable to have surgery in the future. You will have to have HT afterwards to keep your PSA levels down which will result in ED problems.As for me four years on dry, off HT the past 2 years psa level 0.4 but I have ED problems due to extent of of cancer in Prostate. I was told by the team that I had the PC for about 10 years, what ever route you go you must talk to each other and keep talking.

rodders

User

Posted 08 Dec 2014 at 19:12

Pushing for a decision so quickly is perhaps more about convenience for the specialist than the best interests of your OH. I would consider telling the doctor that you need more time and would like a referral to an oncologist to discuss proton therapy, brachy, radiotherapy etc before you can agree to surgery. It may be that there are medical reasons for the surgeon recommending surgery as your only option but you need to understand what those reasons might be. Is it also possible that there has been a misunderstanding about the need to make a decision within one working day after your appointment?

In terms of your other question, ED can be a sign of PCa but in your OHs case it is more likely to be a result of the stress and anxiety of diagnosis - not surprising that he can't get aroused if every time he starts to get an erection it reminds him that he has cancer! For men with medical ED (rather than psychological) the chance of having long term ED after treatment is increased but not definite.

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

User

Posted 09 Dec 2014 at 01:13

Old Codger,

For the sake of accuracy, I have to point out there must be some misunderstanding between you and your friend because Proton Beam Therapy is not available at Coventry University Hospital - check with them if you don't believe me, their phone number is 02476964000! In fact it is not currently available anywhere else in the UK other than at Clatterbridge where they have a low powered machine capable of treating little more than eyes. Much has been made of the two new Proton facilities that are being funded by the NHS at the Christie NHS Foundation Trust Hospital in Manchester and University College London Hospitals NHS Foundation Trust. This is because they will be a first for the UK and obviate the need for so many patients to seek Proton Therapy abroad. They are not expected to open until 2017. http://www.treatmentabroad.com/cancer-treatment-abroad/guide/uk-patients-access-proton-beam-therapy

So if the OP wishes to opt for Proton Therapy, it will mean having to go abroad for it. Whereas a number of people have received funding for some cancers where it is less dangerous to have Proton Beam Therapy than Photon radiation, head and neck being good examples, it is much more difficult to obtain funding for Prostate Cancer because this can be treated satisfactorily with one of the various forms of Photon radiation. Of course this is not a problem if your insurers will meet the cost (around £95,000 in the USA to cover preparation, treatment, accommodation etc for about 3 months) or quite a bit less if you go to somewhere like the Proton Centre in Prague which is modern but lacks the long experience of the USA in this field. Alternatively you can pay for the treatment yourself if you have deep pockets!.

Edited by member 09 Dec 2014 at 09:23 | Reason: Not specified

Barry

User

Posted 12 Dec 2014 at 19:35

Originally Posted by: Online Community Member

Old Codger,

Of course this is not a problem if your insurers will meet the cost (around £95,000 in the USA to cover preparation, treatment, accommodation etc for about 3 months) or quite a bit less if you go to somewhere like the Proton Centre in Prague which is modern but lacks the long experience of the USA in this field. Alternatively you can pay for the treatment yourself if you have deep pockets!.

Barry is, of course, quite correct. There was a case reported in our local paper earlier this year of a gentleman of Czech descent but a long-term resident here in the UK who travelled to the Prague centre for proton beam therapy for his PCa & paid around £17,000 for the entire course of treatment, which was concluded in 3 weeks. He intended to pass on the cost to his local PCT under EU-wide reciprocity rules, but whether he was successful in this I've no idea. When vacillating over the many treatment options for my own PCa, after which I decided to opt for RALP (see Da Vinci threads) I had a final consultation with a senior oncologist working across several of the major London hospitals who confirmed that the proton beam treatment may become available in a limited number of UK centres in a few years time, if approved by NICE.

User

Posted 13 Dec 2014 at 02:15

I will not go into this in great depth because it is rather academic. Excluding the USA, which has many centres and welcomes overseas patients with PCa, there are not sufficient Proton Centres elsewhere to meet demand and some will not treat patients with PCa because other cancers benefit more from this form of treatment. I know this because I enquired about Proton Therapy for my own PCa in Europe and was refused at a couple of centres. (I met the requirement of a study and had IMRT in Heidelberg with Carbon Ion boost in Darmstadt). However, many new Proton Centres, some of them also able to treat with the stronger Carbon Ions are being constructed or are in the planning stage. Some like the previously mentioned centre in Prague are happy to treat PCa, perhaps because as a new centre with little experience they want to attract customers to help pay towards the high capital and running cost of the centre.

Technical advances mean that the Proton Centres are becoming more compact but these still require several years to plan, build and make ready to treat patients. A lot of space is required to accommodate the cyclotron or synchrotron accelerator and the running costs are high. This facility at Heidelberg gives an idea of what is involved. It can also treat with carbon ions which makes it larger and is the sort of thing we should be building in the UK but in typical British fashion the Government have opted for Proton only and well after other European countries. The Heidelberg Centre uses as much power as a Town of some 10,000 people and employs 70 technicians. The follow on Centre in Pavia in Italy is slightly more compact. https://www.youtube.com/watch?v=LeApaY7ctMo

Barry

User

Posted 21 Dec 2014 at 19:01

Thank you all for your replies ....

We contacted Prague about Proton Beam Therapy (Which is easy, because it is an empty box to fill in on their website - and they came back to us literally straight away) - they wanted a copy of the MRI scan and all the medical notes. They preferrably wanted the MRI scan to be less than 3 weeks old. Now this is where we hit problems. Two weeks had already passed. We couldnt get hold of the surgeon who had given my OH his diagnosis at his desk at our local hospital, we got his secretary who told us we had to see our GP and get him to write to the hospital giving us permission to have the medical notes and MRI scan.
Our doctor, said he wasnt getting involved and playing the hospitals games, as we were legally entitled to have all the notes. We then got hold of the only person in the hospital who could release the notes and she was going to have the following week as holiday, but was going to come in for a couple of hours that holiday week. There were forms to fill in and a 40 day timespan to wait to get your notes. The long and the short of it is that we have got everything together in just over a week by collecting from hospital (MRI Scan) and going to the hospitals offsite storage facility for the paper notes. But we could have been made to wait 40 days for the information. We now have to figure out if we can send the MRI scan in the required format in an email or whether the cd has to be physically sent by post. "Man with PC" is very correct with what he says. There is only one proton beam treatment centre in UK and it is not suitable for prostate cancer as the dose is too low. 2 of the required machines have been ordered for the NHS for 2018, but they wont be used for prostate cancer (although they are suitable). Prague is "cheap" compared to going to the USA. We are expecting to pay in the region of £17.000 to £20,000 out of our own money for treatment. But no amount has been mentioned, or whether Prague will even accept my OH. I found this treatment, but my OH now realises why I think it is a good idea. We dont want the side effects of incontinence or ED. Proton Beam Therapy seems the offer less chance of affecting any part of the body outside of the prostate. It is a really strange concept as I think what has happened is that they have another company outside the hospital who organises your accomodation and also theater tickets and sightseeing around Prague and picks you up at the airport. I certainly hadnt considered it to be a holiday, but my understanding is that there are so little side effects that you can treat it as nice vacation. Yes I am recoiling at the thought, but isnt that what we would all like for these aweful illnesses to be something you can just zap and it goes away. This company also asked if we would like to considered the Da Vinci route or another option, but we did know that these alternatives are offered in the UK. But it is the Proton Beam Therapy that we want, so I didnt really take much attention. It is the treatment that has been all in the news recently ... http://www.dailymail.co.uk/news/article-2844015/Brain-cancer-boy-Ashya-King-better-talking-parents-proton-therapy-treatment-Prague.html . I would like to state that this is a lot of money for us. Also, we dont know if we can go down this route as my OH hasnt been assessed by Prague.

User

Posted 22 Dec 2014 at 03:19

Hi Sue,

As you are very seriously considering Proton Beam Treatment, I will relate in some detail my experience and thoughts which may be of some interest to you. I tracked down a UK professor whose papers I had read in medical journals concerning patients being treated abroad with Hadrons. He was, (maybe still is), on a Board that advises the UK Government on radiation and had a good knowledge of what was available worldwide. He was at the time (early 2008), at the former rather decrepit Queen Elizabeth hospital in Birmingham, where as part of his work he secured funding for people, often children with critical head cancers to be sent to the USA for Proton Beam Treatment. He agreed to see me exceptionally, if I got a referral from my GP who obliged. I know he has since relocated but don't know to where. Anyway, we discussed various forms of radiation for my PCa. His opinion was that whilst Proton Beam was a very good option to minimise collateral damage for some cancers, particularly heads, the advantage was only slightly better for PCa. (Since this consultation, there have been more advanced Photon machines introduced in some UK hospitals such as 'Rapid Arc' for example that have closed even this small gap). My own consultant at the Marsden, one of the top UK cancer Hospitals, said he thought Proton Therapy for PCa little if anything better than what was the state of art machines they could treat me with at the time.

It was calculated that preparation, board and lodging and Proton treatment in the USA would be of the order of £90,000 (in 2008), more likely nearer £100,000 today. There were few centres with Proton Beam in Europe at the time and those I tried didn't want to treat PCa. Japan was another possibility and they also had had good results with Carbon Ions which are more devastating to cancer cells than Protons because they cause greater damage to their DNA having a greater RBE. However, Japan is an expensive place and I didn't fancy going so ruled that out. I had ascertained that there was a study being conducted by the University Hospital Heidelberg in Germany to treat with 30 fractions of IMRT each of 2gy plus a boost of 6 fractions each of 3gy of Carbon Ions so overall a higher dose of combined RT/Particle treatment than would be given as IMRT only in the UK. My second opinion agreed that might be a good compromise although the treatment was experimental. So I thought I would see whether I met the criteria for the study.

I contacted the hospital and as I met the criteria was told they would treat me if I was referred by my GP and sent them a disc of my scans and histology. My GP obliged, warning that the cost would be mine* and the Marsden provided the disc and histology which I collected from them as I lived fairly close to this hospital.

I was required to make a preliminary stay in Heidelberg for one week during which I had a consultation with the top man (not permitted to name names on this forum), had blood tests, an MRI scan and five CT scans! They also bonded me to a wooden frame and wrapped quick setting bandages round my head to just above my knees. This was then cut open so I was released. The body mask so formed had plastic clips inserted along its length and for each treatment I had to climb into it. It was so tight that it took two radiologists to hold me and the mask to secure it on each occasion! Whether other centres go to these lengths I don't know.

When the blocks for the linacs had been made and there was a slot at GSI Darmstadt for me to have the Carbon Ions - the Heidelberg centre not being ready at the time - I retuned to Heidelberg for just over two months to have my treatment. I stayed at a self catering holiday home up in the mountains that one of the study nurses had found for me. It made for a wonderful holiday, Heidelberg is such a beautiful place I always look forward to visiting. (Cheap Ryanair flights to Hahn and then coach to Heidelberg being my preferred route).

As was expected of me, I returned at regular intervals for check ups for three years, each time having a PSA test MRI scan and report form to complete.

*The Heidelberg University Hospital and it's supporters met the cost of the Carbon Ion element and provided the IMRT at reduced cost which I managed to get another party to fund, lucky me! The treatment was excellent and killed the cancer found on diagnosis. There is always a risk that a new tumour may grow and unfortunately this has happened. This could also happen where treated with Proton Beam.

They were doing studies in Heidelberg to establish how a combined treatment of IMRT plus Carbon Ion compared with IMRT plus Protons but I don't know where they are with this. I guess in any event it is rather late for you to investigate this but may be of interest to somebody else.

Edited by member 12 Jul 2018 at 02:55 | Reason: Not specified

Barry

Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.