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Heart disease and prostate cancer

User
Posted 12 Nov 2016 at 18:30

Hello, yes I've joined the club. .. . . . .

I'm really concerned about the lack of information available regarding the treatment of prostate cancer when I have heart issues.

I am 58 had a heart attack at 37 had a pacemaker with defibrillator fitted last October as a last resort before being put onto the transplant list (not MRI compatible) and was diagnosed recently with PC.

Gleeson 7 3+4

PSA 4.7

Prostate 27mm OD .(normal)

Been offered Surgery, Bracky, or Hormone but due to cardio issue active monitoring was suggested.

I have been looking into HIFU but none of the "professionals" have said it's the way to go.

Is anyone else in the same position as I would welcome feed back (been reading with interest the comments and advice on this wonderful forum, even had a chat with one of the specialist nurses a couple of week ago which was the only person to person support I have had since diagnosis and I must say that I needed it)

Frank-n-furter

 

Life's a b****- then you die!!!!!

 

life's a b****- then you die!!!!!
User
Posted 13 Nov 2016 at 19:32

Thank you Lyn, I did read the report from 10th Oct and was of the opinion that AS was the way for me, however when I was told that I wasn't suitable for it I started to look for alternatives to surgery and radiotherapy as I know my cardio condition, however it seems the surgeon and the radiotherapy people didn't. It was only when I insisted they contact my cardiologists to ascertain the suitability of their recommendations regarding my heart and my suitability for these options that they changed their minds and offered AS.

The question I asked both was " what will kill me first, my heart or PC?"

I'm not bothered about AS as I have been living with the sword of Damocles (heart state) over my head for 20 years so another sword  dangling there for a few years more isn't a problem, but I do need the answer to both before I can make a decision.

I'm also aware that treatments and techniques are advancing at a pace and that may be by the time I need to act something else is available.

At this moment in time I'm concentrating on life, holidays, riding my bike, good food and the love of a good woman.

I have an appointment with the cardiologist tomorrow then I will have another PSA test in a couple of weeks and get the result when I come back from Lanzarote (the day before I see the surgeon for the second time) so that will be an interesting consultation, I will keep the community informed of the outcomes and my decisions.

You guys are incredible thank you from the bottom of my heart (the bit that works) and pay no heed to my "gallows humour " its just the way I deal with life.

Best Regards

 

life's a b****- then you die!!!!!
User
Posted 13 Nov 2016 at 08:58

Hello Frank and welcome.

Look up Nikonsteve. There may be information there that can hep. Steve also has heart issues

*****

We can't control the winds - but we can adjust our sails
User
Posted 13 Nov 2016 at 11:28

Hi Frank,

There are not many men or their representatives on this forum with heart disease but this additional problem is a major complication as you will be aware both as regards to full diagnosis and treatment.

You mentioned HIFU, which although still regarded as experimental due to unknown long term experience, in the short to medium term is now comparing quite well with others treatments. HIFU is usually preceded by a template biopsy and MRI scan and the needles for this are placed with the aid of a real time scan. In the HIFU operation usually done under general anaesthetic but occasionally epidural, In the the HIFU operation the probe is carefully focussed on the tumour which is ablated. However, I am not sure if suitable alternative scans could be given as appropriate in your case, to ascertain that the procedure could be done. You would need to discuss your particular situation with a 'HIFU specialist'. Should you investigate this possibility please let us know what you are told and of course let us know whatever treatment you have.

Barry
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User
Posted 13 Nov 2016 at 08:58

Hello Frank and welcome.

Look up Nikonsteve. There may be information there that can hep. Steve also has heart issues

*****

We can't control the winds - but we can adjust our sails
User
Posted 13 Nov 2016 at 11:28

Hi Frank,

There are not many men or their representatives on this forum with heart disease but this additional problem is a major complication as you will be aware both as regards to full diagnosis and treatment.

You mentioned HIFU, which although still regarded as experimental due to unknown long term experience, in the short to medium term is now comparing quite well with others treatments. HIFU is usually preceded by a template biopsy and MRI scan and the needles for this are placed with the aid of a real time scan. In the HIFU operation usually done under general anaesthetic but occasionally epidural, In the the HIFU operation the probe is carefully focussed on the tumour which is ablated. However, I am not sure if suitable alternative scans could be given as appropriate in your case, to ascertain that the procedure could be done. You would need to discuss your particular situation with a 'HIFU specialist'. Should you investigate this possibility please let us know what you are told and of course let us know whatever treatment you have.

Barry
User
Posted 13 Nov 2016 at 14:22

Thank you very much for your reply I certainly will keep the community informed of what I learn, after all, I have learnt so much from this forum.

Currently waiting for a referral to UCLH for a second opinion (having a bit of a fight with the CCG about this as I live in Lancashire, but I do have, and am exercising my legal right to be referred for a second opinion to a clinic of my choice).

I'm leaning towards active surveillance, but if I can't have any treatment due to the cardio condition what's the point.

What's  the expected morbidity of someone with a Gleason 7 3+4  confined to one lobe with a psa of 4.7 ???

This is the question I keep asking without getting an answer, seeing my cardiologists tomorrow, will ask him the same question, also if its worth it, will he fit an MRI compatible pace maker.

 

Best regards

Frank-n-furter

Life's a b***h then you die.

life's a b****- then you die!!!!!
User
Posted 13 Nov 2016 at 18:54

Active surveillance is not necessarily a forever decision ... if used correctly, it simply delays radical treatment until the benefit (extended life) outweighs the risk (early death). To be done properly, AS must include frequent PSA test with at least annual DRE and annual MRI. In your case that is problematic so I would want to know what alternative scans they can/will offer you. AS without any scan is not AS, it is waiting and hoping.

Re expected morbidity - it depends on how close to the edge the tumour is, which is information not known for you at the moment. I suspect that is why they can't give you an answer. However, you could go to the Memorial Sloane Kettering nomograms and enter your stats so far - that will give you a predicted outcome - do bear in mind though that the tool is American and outcomes in the uK are slightly worse. Your consultant may have access to a similar tool for the UK or your area (our urologist has one that has been adjusted specifically for Leeds statistics)

There are many different MSK nomograms but this one seems most reelvant to your current question: https://webcore.mskcc.org/survey/surveyform.aspx?&preview=true&excelsurveylistid=4

Research has been published very recently that indicated that for men diagnosed early (T1 cancer) there was no difference in outcomes at 10 years post-diagnosis i.e. they had the same chance of still being alive 10 years later whether or not they had treatment. The crucial thing there of course is that some men will be thought to be T1 but it subsequently turns out to be higher.

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

User
Posted 13 Nov 2016 at 19:01

Or this one (if you pretend that you are about to have the op)

https://www.mskcc.org/nomograms/prostate/pre-op

 

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

User
Posted 13 Nov 2016 at 19:32

Thank you Lyn, I did read the report from 10th Oct and was of the opinion that AS was the way for me, however when I was told that I wasn't suitable for it I started to look for alternatives to surgery and radiotherapy as I know my cardio condition, however it seems the surgeon and the radiotherapy people didn't. It was only when I insisted they contact my cardiologists to ascertain the suitability of their recommendations regarding my heart and my suitability for these options that they changed their minds and offered AS.

The question I asked both was " what will kill me first, my heart or PC?"

I'm not bothered about AS as I have been living with the sword of Damocles (heart state) over my head for 20 years so another sword  dangling there for a few years more isn't a problem, but I do need the answer to both before I can make a decision.

I'm also aware that treatments and techniques are advancing at a pace and that may be by the time I need to act something else is available.

At this moment in time I'm concentrating on life, holidays, riding my bike, good food and the love of a good woman.

I have an appointment with the cardiologist tomorrow then I will have another PSA test in a couple of weeks and get the result when I come back from Lanzarote (the day before I see the surgeon for the second time) so that will be an interesting consultation, I will keep the community informed of the outcomes and my decisions.

You guys are incredible thank you from the bottom of my heart (the bit that works) and pay no heed to my "gallows humour " its just the way I deal with life.

Best Regards

 

life's a b****- then you die!!!!!
User
Posted 13 Nov 2016 at 21:28

Frank, your heart condition would probably rule out keyhole surgery (being tipped head down for hours puts too much pressure on the heart apparently) but I am sure we do have a couple of members here that have had open RP with pacemakers - ask the cardiologist tomorrow perhaps?

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

User
Posted 14 Nov 2016 at 15:08

Hi Frank,

I have only just revisited this site after several months. It may assist your decision if I just outline my own experiences as we have several things in common. 

I am 71, have ischaemic heart disease, a heart attack in 1992 and a pacemaker since 2007. I was diagnosed with prostate cancer in 2013: Gleason 6 (3+3), PSA 7, T2b. MRI scan was inappropriate. In view of my age and concerns about my heart and surgery, (I felt that if the latter, the sooner the better), I decided to investigate this as a preference. I had a private consultation with a urologist at UCLH who warned of the usual issues, especially erectile dysfunctiion, continence etc. At my request my local urologist kindly referred me to UCLH for robotic prostatectomy.

The hospital team was marvellous but from an early stage, and possibly because I was concerned to raise the question of my suitability for surgery, the tendency was to advise AS notwithstanding that during the period of a few months my PSA increased to 8 then 9. One team consultant considered me low-risk of progression so tried to refer me back to my local hospital. I was not convinced this was a good idea as unlike others with similar stats there was no clear picture of the extent of tumour. After objecting to AS I was offered template biopsy. As a result, the disease was regraded Gleason 7 and I was now considered for treatment: surgery, radiotherapy or HIFU. Having considered the side effects I once again opted for surgery. HIFU was very attractive except that monitoring involved MRI scans. My cardiologist considered me fit for surgery and did not offer to change my pacemaker, so I settled on the surgery. My pre-op bone scan was T2N0 and PSA 11.2.

The prostatectomy was carried out in September 2014. Recovery was uneventful. Histology: pT2C, positive circumferential margin. I was advised that I had been operated on "just in time" and that my post-op PSA should be carefully monitored. the first two tests were a satisfactory 0.1 by June 2015 it had increased to 0.2 and in November 0.24, so I was offered radiotherapy of the prostate bed to deal with any ca cells that may have been left behind. The RT course was completed in April 2016 with few side effects. So far, my tests in July and October have been a satisfactory 0.1 which is where I hope it will stay.

So, in conclusion, I applaud your desire to get all the facts, and if you manage to become "MRI friendly" the resulting scan will, I hope make your treatment decision that much easier.

I hope your session with the cardiologist went well and that whether you opt for treatment or AS, it all turns out fine in the end.

User
Posted 14 Nov 2016 at 17:14

Well done Dave - the template biopsy is a great suggestion.

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

User
Posted 14 Nov 2016 at 17:27

Hi Dave and thank you for sharing your journey with me,
Today went very well (as far as I'm concerned) the consultant recommended that I keep on AS because a recent bout of runny bottom nearly killed me ( the meds did not stay in my body long enough to have the desired effect on my heart) this indicated how precarious my ticker is, also as I'm normally pretty stable why risk the potential effects of PC treatment?
He suggested that there is a growing mountain of evidence to suggest that in my case the best way to treat PC is not to treat, with a PSA of 4.7 and a 3+4 score.
He suggested that if my PSA was rising fast to 100 or more then consider treatment but from mortality algorithms (?) with my conditions 4 out of 100 would die within 10 years of PC and they were not bad odds.
The excellent news is that I have been fitted with an MRI compliant unit and leads so lots of other treatments now become available if needed, he will be writing to the radiologist and surgeon who have been trying to tie me onto that conveyor that feeds you into revolving blades that glow in the dark outlining the risks to my life the treatments offered to date and why they are not suitable, he will also refer me to the gold standard gastro and Urology consultants at the hospital if I request him to.
I know everybody is different and that treatments are an individual option based on personal factors and preferences, but I really only knew what this really means after contact and information/advice given from all you guys on this forum.

For that I thank you all

Best regards

Frank-n-further

P.s. still got the Psa. test before I go on hols and a meeting with the surgeon when I get back sorry I won't be helping him meet his 18 weeks treatment target. : . : . : . : . : yet!

life's a b****- then you die!!!!!
User
Posted 14 Nov 2016 at 18:01

Lyn, your posts have been invaluable and so close to the advice given today which shows what a really well informed forum this is.

THANK YOU VERY MUCH !!!!!!!!!!!!!

My very best regards

FNF

life's a b****- then you die!!!!!
User
Posted 14 Nov 2016 at 19:49
Hi Frank,

I have had a busy few days so have only just seen your post yes having heart issues does rule out certain treatments and options but I just wanted to reassure you that there are always ways around everything.

Trevor had his first heart attack at 58 this was quite a major one and he had to be resuscitated once he was stable he had 2 stents fitted . He never does things by halves and since had another 3 heart attacks he now has 8 stents fitted and had his defibrillator put in around 5 years ago. His pca was diagnosed in 2013 with ext bone mets , we were initially told that it would hinder quite a few treatments and I am sure it will in the future but in the here and know we have managed to get by.

I suppose I am trying to say yes certain treatments will be of limits for you but there are always alternatives .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 14 Nov 2016 at 21:34

Hi Trevor, thank you for your message, you are correct, there are "off limit" treatments for those of us with cardio conditions but it would be better if the "professionals" who offer us treatment options took these things into account, and it would be even better if there were even more options for us, lets wait and see what develops over the next few years, you never know we may be lucky some time soon.
Best regards

Frank-n-furter

life's a b****- then you die!!!!!
User
Posted 15 Nov 2016 at 08:14

Hi Frank

I`m glad that the cardiology appointment went well. I assume that the MRI compliant pacemaker was fitted as outpatient surgery or is it even more simple than I imagine? 

As you say, having the extra diagnostic tool does help the decision making, so good luck with the MRI scan. My PCa was found to have invaded both sides of the organ and I forgot to mention that the main tumour was found to be very large, so I am content that I and my advisers made the right call following the template biopsy. It`s great that you will now be able to avoid that procedure.

Regards,

Dave 

User
Posted 15 Nov 2016 at 13:45

Hi Dave, apparently, MRI compliant devices and leads are fitted as standard at this cardiac unit, also the other PC hospitals i have been to do not have the necessary equipment or personnel to interfere with my pacemaker!!!
i only have PC in one side at the moment from 12 barbs 3 were at 40% and one was at 70% and the action limit is 50%
anyway as you said the treatment options now available for when/if required have made me far more optimistic than i was so lets see what punches i need to roll with as i progress on my PC journey

Best regards

F-n-F

P.s went and had a celebratory curry last night at my favorite Indian restaurant, it was delicious. . . . . .tonight i'm taking some beers round to a neighbor who has been diagnosed with kidney cancer so i'll try to cheer him up and we'll support each other. . . .there's always someone worse of than you are.

life's a b****- then you die!!!!!
User
Posted 16 Dec 2016 at 18:50

UPDATE-1
Had a letter from my cardiologist whilst I was away saying that he was wrong, only the leads are MRI compliant but he is prepared to fit a compliant device if required for my PC treatment.
My meeting with the initial surgeon went as expected, he was quite cold and said that he had responded to a complaint I had made to the CCG and that his colleague would be requesting a second opinion for me, in the mean time I will be monitored via AS.
Latest PSA stable at 4.7
P.s Lanzarote was fantastic.
Best regards
F-n-F

life's a b****- then you die!!!!!
User
Posted 10 Dec 2017 at 13:55

Well it's been 12 months from my last entry (nearly), and after being referred to UCHL and having an MRI at the Brompton I was due to have HIFU treatment in June, however 4 days before the treatment I was advised to cancel by UCHL due to the high risk caused by my cardiac condition (the anaesthetist was concerned regarding post op morbidity) , I decided to wait for 6 months to establish the rate and direction of growth of the tumour so I could decide if the risk was worth it.

after another MRI scan in Nov I was told by UCHL that although the tumour had grown they could not say by how much ????? and that I should refer myself to Christie's for conventional therapy (which had already been discounted)and that HIFU was still off the option list, I am still waiting for written transcript of the consultationto help in my decision as to wether to treat or not.

latest PSA 4.9

life's a b****- then you die!!!!!
 
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