AP (Alvin Pope): I am talking to Mark Dalloway, a 53 year old police officer, who was diagnosed with a locally advanced and high grade prostate cancer, just two to three months ago in November. We are going to talk about his interesting story and his treatment so far, and how this is impacting on his life and family. The FOPS can help in bringing people like Mark together and giving them mutual support and encouragement.
Mark, this starts as a BRCA2 story, can you tell us a little bit about what that means?
MD (Mark Dalloway): Well, BRCA2 is a gene mutation which runs in my family. It started with my cousin, who is a nurse, she had breast cancer, and someone mentioned to her about this gene, because she was quite young. I can't remember how old she was when she had it, but she was around about my age, maybe a bit younger when she had breast cancer, and she got herself tested for the gene and she was positive, so then that sort of started the whole family being tested to see who did and who didn't have the BRCA gene mutation. It's the same gene that Angelina Jolie has got, BRCA2, which has been highly publicised in relation to breast cancer, so in women who have got the BRCA2 gene it is predominantly, fundamentally breast cancer that they were prone to get, where as in men, you can still get breast cancer, as my father currently has, but also prostate cancer, and I think skin cancer, I'm not sure. Obviously the main concern is prostate cancer, so I took part in a study at the Royal Marsden.
AP: The interesting thing is Mark's father had breast cancer some years ago now, and we think of that as a ladies disease, but in fact about 2% of breast cancer patients are men, but usually there is a genetic element to it, as was found here, and men who have the BRCA2 gene are also at higher risk of developing significant prostate cancer. So Mark went into a study called IMPACT Study, which is run at the Royal Marsden Study by Professor Ros Eeles, and he can tell us about that because he has been having his PSA checked now for 10 years.
MD: Yes, well when they told me initially, as I say 10 years ago, yes you are positive for BRCA2, and they told me the time that I think there was a 5% more chance of me getting it than any other male, and I thought well 95% odds in my favour I am not particularly concerned about it, so I really didn't give it a second thought to be honest with you. I had my PSA tested annually, and it was certainly below 1, it was generally below .5, .3, .2, .3, it varied for 10 years up until recently, in April 2017, it went to 1.5, which was a 50% increase in a six month period, they said ok we will monitor that because it has gone up 50%, I didn't understand the significance of a 50% increase, I thought still well below 3, which was the benchmark for PSA for somebody my age, so I wasn't particularly concerned about it. And then in late September I had some symptoms, which was going to the loo on a regular basis, 6 or 7 times in one night, I went for a wee. I decided to go to my doctor, and I was due a PSA test as a part of the IMPACT Study at the Marsden the following week, and he said well go and have your PSA checked and see what that comes back as, and we will look at it from there. So, October 3rd I had my PSA check and they phoned me a couple of days later, which was quite common, I remember specifically where I was in the office, and then they said it's gone up to 13, and as soon as I heard that, it was not the news I wanted, quite clearly, and it was initially a shock, but even then they said to me it might not be prostate cancer because the PSA is just an indicator.
AP: So if you have a raised PSA you need to exclude other causes, urine infections and things so Mark had it re-checked a short time after that and it was still much the same, so he went on and had some investigations which included prostate biopsies and several scans. They soon told you the results of those, because it all happened quite quickly then. What did they say first to you Mark?
MD: Well they first of all said, after the MRI scan I think it was, that yes it's cancer, and then initially I said, well are you sure? You even go to the extent that you think they might get your scan mixed up with somebody else’s, it can't possibly be me, surely there must be some mistake, that can't be right. I can't have prostate cancer, I'm 53, I'm healthy, I exercise a lot, I eat healthily, ok I maybe have too many glasses of red wine at the weekend, as we all do, but generally you know, I thought hang on a minute, this is not right, but quite clearly it was. So I then had a few other scans and I had the prognosis on the 9th November, which was that it's aggressive, it's locally advanced, you've got two lymph nodes invaded, along with one area on your pelvic saddle, a bone metastasis, which basically I'm surprised I remember it because the thoughts when you go through your head when you initially hear that, well that's it then, that's me. One question I was tempted to ask was how long have I got, am I going to be dead in six months, because that's what initially goes through your head. It's grown so quickly over a short period of time, PSA has gone from 1.5 to 13, it's aggressive, it's broken out the prostate, there's no hope...
AP: And that's a very natural feeling, but luckily for most men with prostate cancer, your imagination is always worse than reality. But things did happen quite quickly for Mark, because just before he got these results he had experienced some pain on the left side of his abdomen, and the scan apparently showed that the left kidney was under a little bit of pressure, because there was some constriction of the tube going into the bladder, and just a few days afterwards he had a really bad attack of pain, where I think you ended up in the local hospital?
MD: That's right.
AP: What happened then?
MD: Well I had been to the Marsden and I had one of my many appointments and told them that I had had a bit of discomfort in my left hand side and they said look, if it gets any worse you need to go to A&E, and this was on a Thursday, and on the Friday evening I went to pick my wife up from work and the pain was bad, so I said look we are going to have to go to A&E. It's not a brilliant time to go to A&E on a Friday night, but I went to Stoke Mandeville initially, told them that I had been diagnosed with prostate cancer, they admitted me then I got transferred to various hospitals, and I ended up having a stent put from my kidney into my bladder because the tumour had blocked off the ureter, and that was what was causing the pain. First they put a temporary tube directly into my left kidney through the skin of my back and as soon as they put that into the kidney the pain just went immediately really, straight away relief.
AP: And the kidney felt happier?
AP: Mark was told that he had a high grade prostate cancer, Gleason 5 + 4, and some small positive nodes, but all localised to the pelvic area. So please tell us about the first treatment for your prostate cancer.
MD: Well, the first treatment that I had was Bicalutamide, which is a hormone suppressant, in tablet form, which I took twice a day. I started this immediately after I had my final scan on 7th November, which I think was a PET scan. At this point my world changed and 24/7, even now, 24/7 I am thinking about this condition, and to begin with the paranoia about forgetting to take one of those tablets was quite intense. I started to take Bicalutamide in November, and then over a period of time I was changed to a monthly injection of Degarelix, which started in December about a month later.
AP: Degarelix is one of the newer hormone injections. A lot of you reading this will be familiar with drugs like Zoladex and Prostap. The effect is the same, but Degarelix works slightly differently, it works quickly, and more profoundly to lower the testosterone. Most patients are later changed over, if they start with Degarelix, to one of the standard implants that can be given every three months rather than every month as Degarelix needs to. Also it would be unusual to find a GP who would continue Degarelix, perhaps largely for cost issues, so Mark is probably heading that way. In addition to standard hormonal therapy, Mark has been offered additional up-front treatments, which he can also tell us about now.
MD: It's a clinical trial called ARASENS, the drug is a new hormone made by a German company, Bayer, who are a big pharmaceutical company. It's an additional hormone suppressant to the Degarelix, and when basically they said are you prepared to go into the trial, it won't harm you and it may not help you, but if it does do anything it will only do you good, and I think basically when they tell you things like that you just take whatever they offer you, so I said yes, I would do it. They said they are looking for 1,300 people world wide, and I said well how many people have you got so far, and they said none, you are the first. So I am somewhat the guinea pig.
AP: Perhaps you are more of a trail blazer, because this is the way new drugs come about. ARASENS is a phase 3 trial so you won't know if you are getting the active drug or the placebo. Darolutamide is a new anti-androgen drug with a specific activity to also blocking androgen receptor mutations, which is thought to be an important reason as to why hormonal drugs become less effective over time, so this new drug may have a longer lasting effect than enzalutamide. They've already had preliminary testing, so they know it’s safe, they know it works, they just don't really know how well it will work as to be successful it has got to be better than existing drugs. It is only by getting lots of men to try these that they will find that out, so they welcome guinea pigs! You are also having conventional treatment, so you are having the standard hormone treatment, and they have also, largely because I expect of the small bone lesion, are starting you on chemotherapy. So what's that going to involve?
MD: Well, going back to November when they told me it was an aggressive tumour, I thought it would be because of the BRCA2 gene, generally people have aggressive tumours, and they said that the treatment plan for me would also include six cycles of chemotherapy and then radiotherapy. I will have chemotherapy every three weeks, for six cycles, then a six to eight week break in between that and then start radiotherapy for 37 sessions. I was starting to get, I guess you could say some side effects from the hormones, which was, I've lost a lot of weight, but whether that's a side effect of the hormone or whether there is stress thrown into that, I've also changed my diet, there are a number of factors that could contribute to that. But that Degarelix gave me quite a bad haematoma the first time, and it's quite an unpleasant injection and does have side effects, and generally the pain and swelling around the injection site. I have definitely lost muscle mass, but I haven't been doing as much exercise as I was.
AP: You are still managing to work a bit, which is really great news. We do encourage patients to try and keep going with as normal a life as possible, and luckily if you've got an employer who can adapt to you then that's important. Have you had any hot flushes yet?
MD: I do have hot flushes, but they tend to be at night, and they tend to last, literally as soon as they come I sort of throw the quilt off my legs and then within the minute I am back to normal, but that is something that I wouldn't even consider as an issue to be honest with you.
AP: They may get a little bit more troublesome, and that is often one of the major things that patients on hormonal treatment do experience. It can be helped if it becomes a real bother. So, we're on hormones, started chemotherapy, just had one cycle so far?
MD: Yes, two weeks ago.
AP: So very early to report how that's going I guess. And then you will be facing a course of radiotherapy in perhaps three months' time.
MD: The chemotherapy, as I say I am only two weeks into it, but what I was given was, I had my chemotherapy on the Thursday and on the Sunday I had to self inject, I think it's called a G-CSF, which helps the bone marrow produce more white blood cells. I don't know whether they have given that to me because my white blood cells are low, or whether it is normal to give it.
AP: It's becoming more normal to give G-CSF because low white cells risk you getting serious infections and is one of the factors that limits the tolerability of chemotherapy. If your white blood cell count gets too low that you can't have the drugs, so anything that can keep up is likely to be of benefit.
MD: Well, I got what seemed to be bone pain after my chemotherapy, that was by far and away probably the worst pain that I've had since my condition started, including the kidney issue back in November, because the bone pain was quite excruciating. I had not been taking any other medication at all, i.e. Paracetamol, Ibuprofen, nothing at all, but I did phone the hospital, they've got a 24 hour hot line, where you can phone them and tell them what's going on, and they said well just take some Paracetamol and see how that goes, and the Paracetamol actually worked a lot and settled it down, and I didn't get any more issues after that. And I don't particularly like taking Paracetamol or Ibuprofen, I have to report everything I take to the researchers for the ARASENS trial as well, so if I take Paracetamol I have to let them know straight away, but other than then I haven't taken anything at all for any issues.
AP: So, you are looking a picture of health at the moment, but clearly this has been a major life event, so how has it affected your family?
MD: Well, profoundly, it's difficult to put it into words. I mean, as I have said my father is currently very ill, he has been in a hospice which he has just come out of, and he is now in his residential home and they are talking weeks before he passes. A friend of mine died on Tuesday from cancer, same age as me, wasn't prostate cancer, it was pancreatic cancer. It seems to be all around me at the moment, and when you hear those words, you know, that you have got cancer, your life, it changes the perspective on absolutely everything that you are doing. I mean as I said to you initially, you think well that's it, I'm going to die, and again you go to Dr Google, and I did say at the Marsden, just give me some hope. I just want some hope, and they said well yes, there is hope, it can be cured. And they used that word, not me, and I'm not sure it's the right word to use but that's the word that they've used, so the more you look at it the more you realise that it's not like, oh you'll have chemotherapy, radiotherapy and then that's it for the rest of your life, crack on. You know, it will be here for the rest of my life, however long that life happens to be, and I will be monitored on a regular basis. It's a different sort of normality, and as I said your perspective changes completely.
AP: Have your priorities then in life changed?
MD: Well, work for me, I mean I get up at 5.30 in the morning, I've worked 36, 48, 40 hours without a break, and you know just full on work, work, work, and then all of a sudden something like this hits you and you think well, actually you know, perhaps I don't need to worry about work so much. I am very fortunate in the job that I do and they are taking care of me and looking after me. I understand other people might be in bit different position, but I am very, very fortunate. But all of a sudden your health and your well-being is your priority, and family becomes important, and as crazy as it sounds, it has actually brought us closer together as a family .... we have never been a particularly close family, I mean my kids, my parents, and most of my family live up in the West Midlands, and all of a sudden we are having more contact with each other on a daily basis than we every did before.
AP: And your boys have done some charity work already.
MD: Yes, they are just in the process. My youngest lad is very, aaah, what's the best word to describe it, emotive, I suppose. He's 19 and he's still a hot-headed teenager, and he wants to do something, he wants to help. He's desperate to do something, you know? And credit to him, he's gone all on social media, I think at the last point there was about 10,000 people had viewed his video, and they have raised getting on for £1,500 now, and hopefully that will gather momentum. He only did it two days ago. And they are both going to have their heads shaved in February, which they are going to stream live on Face-book, because it's all about social media nowadays, to raise money for charity, for Prostate Cancer UK. I am so very proud of them both.
AP: Excellent. Yes, and how is your wife taking it? Is she working at the moment?
MD: She is. My wife, both her parents died fairly young, and I won't say she's used to this, but if it comes to a family that have had no experience or no knowledge, and it's never happened to them, it's more of a shock, whereas she is very practical, very supportive, but in a practical way. She won't break down, she may do when I'm not there, but when I'm there she'll be like, well there's that decorating to do there, and there's this to be done, and trying to keep as much normality about it as possible, because it's easy to say, that's it I'm finished, I may as well sit here and do nothing. You have got to help yourself, and I understand that, and I understand that helping yourself in terms of as we discussed, diet, exercise, is as important as the medicinal treatment that you get. I see it anyway as a holistic approach where everything will help towards the future for me.
AP: And you came to one of the FOPS support group meetings and we hope we are going to see more of you. Did you feel that that was a helpful environment?
MD: Absolutely. I mean I was looking for something, I went on the Macmillan website, because I'm 53, you know, and I speak to my peers, people my age, and say I've got prostate cancer, and then I say to them do you know what your PSA is? And they say do I know my what? PSA - never heard of it. 100% of people I have spoken to my age, men, had no idea what PSA was. There's the odd exception, but the majority, PSA never heard of it. So in a sense I was kind of lonely. I had never met anybody my age who had got it, I'd never met anybody who had got it, and I wanted to speak to other people who have been in my position, and hopefully give me some hope as to the way forward.
When you begin to look at prostate cancer and you look at all the treatments out there available now you realise that it's not what you initially think, you know that you are going to be dead within six months. Whereas if one treatment fails there might be something else, and if that fails there's lots and lots of treatments out there, and it's not all doom and gloom, and some of the people I met at the FOPS Support Group meeting, you know, were testament to that, and it was a real uplift for me to meet those people.
Admittedly the majority of people at the FOPS meeting were older than me, but there were some around my age in similar circumstances. There were people who had been diagnosed in similar circumstances ten years ago. I mean look at Charles and His Prostate Peddlers, and I spoke to him, and that's something I will be keen to get involved with. My wife's a cyclist, I'm not, but I'm determined to become one now.
AP: Would she like you to have some shared activities now?
MD: Yes, absolutely. She's got a bike, I haven't, but next time I see Charles I'll ask him about what sort of bike to get. Obviously I'm going on chemo at the moment, I don't know whether it's the right or wrong thing to do at the moment, do you know what I mean? I'm not sure.
AP: The important thing is that there are lots of people who have similar experiences. A diagnosis of cancer does bring people together, it does make them re-evaluate what's important in life, it does often bring families closer, it gives you something to aim for, and often makes you a far more considerate and rounded person, although one wouldn't wish a cancer diagnosis to be a requirement for being a nicer person.
And as you are very early on in your prostate cancer journey we are going to welcome you to a long time with the FOPS and to update this account as time goes on. Hopefully we will get a lot out of knowing you, and your wife we hope will also come to the Support Group meetings.
MD: She came to the first one. Having been through what I've been through I'm very keen to help other people, and you know take away that initial feeling of complete and utter despair. And the one word that I keep using is the one word that I will continue to use, is just hope. To give people HOPE.
AP: Hope is so important. Thank you Mark so much for talking to us today. I don't know whether there's anything more you wanted to add.
MD: I think we've covered everything haven't we. I mean it's just, I mean for me, if I can help as many people as I can by doing this then I'm obviously keen to do it because I was shocked that so few men my age are aware of prostate cancer.
AP: And we see this all the time, FOPS has two main strategies. One is to help and support people with a diagnosis of cancer in the company of people who have been through similar treatments to give them hope and encouragement that it is not all as bad as they might have imagined. Our second aim though is to educate and inform the wider public about prostate cancer, and our Annual Prostate Roadshow that is going to be coming up in April, now in its seventh year, is our main event to help in that aim, because so many men have no idea, not only that prostate cancer exists and they may be at risk, but even where their prostate is, or what it does!
MD: I think it's one of those diseases where even if people are aware of it, I mean I was guilty of it as well, it'll never happen to me, which is not the attitude. It's just a question of keeping a check on it, and the earlier these things are caught the better it is really, so I think we should be ... you know women have mammograms over a certain age. I think men should be offered PSA testing at a certain age, 50 maybe, or a bit before, on a regular basis. I have heard stories of people going to the doctors and saying I'd like my PSA checked and their Doctor saying you don't need to worry about that, sort of fobbing them off, but I think the PSA test is an important tool in the armoury of dealing with this.
AP: We do want to try and change that attitude, which is all too common amongst GPs. We want to make more men ‘prostate aware’ so that they can make decisions for themselves. So we are really pleased that you were able to share your story with us today, thank you so much.
MD: It’s been a pleasure.
From 7.30pm to 9.30pm at The Junction, Christ Church, Chorleywood At the FOPS Support Group we all ... Read more...
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