A Robotic What? E-Book

Giuseppe Enrico Bignardi

• Herausgeber: Grosvenor House Publishing
• Kategorie: Ratgeber
• Sprache: Englisch

Seitenzahl: 214

Veröffentlichungsjahr: 2017

Beschreibung

This is the story of the author's prostate cancer and how he reacted to his diagnosis and coped with treatment (a robotic prostatectomy). This book includes a systematic search of what patients can do to improve the outcomes of treatment. The book is also aimed at the male relatives of patients with prostate cancer: brothers and sons are at increased risk but, again, there is a lot they can do to reduce the risk and improve the outcomes. The key message is: we can all help ourselves, but we need a proactive determined approach. We need to be active patients.

Leseprobe

Table of contents

Acknowledgments

Introduction

The story of my prostatectomy

Sunday, 23 October 2016 (the day before)

Monday, 24 October 2016 (day 0)

Tuesday, 25 October 2016 (day 1 post-op)

Wednesday, 26 October 2016 (day 2 post-op)

Thursday, 27 October 2016 (day 3 post-op)

Friday, 28 October 2016 (day 4 post-op)

Sunday, 30 October 2016 (day 6 post-op)

Monday, 31 October 2016 (day 7 post-op)

Tuesday, 1 November 2016 (day 8 post-op)

Wednesday, 2 November 2016 (day 9 post-op)

Friday, 4 November (day 11 post-op)

Saturday, 5 November (day 12 post-op)

Monday, 6 November (day 13 post-op)

Wednesday, 9 November (day 16 post-op)

Thursday, 10 November (day 17 post-op)

Saturday, 12 November (day 19 post-op)

Tuesday, 15 November (day 22 post-op)

Sunday, 20 November (day 27 post-op)

Tuesday, 22 November (day 29 post-op)

Wednesday, 23 November (day 30 post-op)

Friday, 2 December (day 39 post-op)

Saturday, 3 December (day 40 post-op)

Monday, 5 December (day 42 post-op)

Wednesday, 21 December (day 58 post-op)

Friday, 13 January (day 81 post-op)

The story of my life

A rough guide for prostatectomy patients: how to deal with problems and get better outcomes

Depression

Choosing the treatment modality or the surgeon

Risk of secondary cancers after radiotherapy

Prostatectomy day: the phoney war is over

Sick leave after a prostatectomy

Risk of hernia after a robotic prostatectomy

Risk of deep vein thrombosis (DVT) after a robotic prostatectomy

Penile rehabilitation after a prostatectomy

Pelvic floor muscles (Kegel) exercises

Continence pads

Urinary Tract Infection

Diet and supplements: do they make a difference?

Exercise

Fighting spirit

Psychological support

Sense of humour

Strategic approach and setting targets

Making lists and tables or spreadsheets

The importance of your partner

The importance of friends and social support

Prostate cancer support groups

Social class influence on outcomes

Sex life

Tumour stage and grade

Another possible explanation for a PSA rise: prostatitis

Should we take aspirin or statins?

Is prostatectomy a cure?

Radiotherapy after prostatectomy

Androgen-deprivation therapy (ADT) after prostatectomy

Life expectancy

Changing the life plans

Message for sons and brothers: you are at risk, but you can reduce the risk

BIBLIOGRAPHY

COPYRIGHT

Acknowledgments

First of all, I would like to thank my wonderful wife Margherita. Margherita is the best thing that has happened to me in my life and I would not have coped with the prostate cancer diagnosis so well without her. I am also very grateful to my urology surgeon for the great skill with which he performed my prostatectomy.

This book, however, is primarily dedicated to my two sons: Agostino and Giacomo. Now you know that your dad has prostate cancer, and that you are at increased risk of facing the same challenge. But there are many things that you can start doing now to reduce the risk. Above all, if you were diagnosed later in life with prostate cancer, or any other conditions, there are things you can do to maximise your chances of choosing the right treatment and to get the best possible outcomes.

The icon of a man, on the front cover was made by Freepik from www.flaticon.com.

Introduction

There are three sections in this book. “The story of my prostatectomy” is the story (so far) of my prostate cancer. “The story of my life” (limited to a few key events) follows, and it may help to put things in perspective: it may explain how I reacted and how I intend to fight my battle. After that, the “rough guide for prostatectomy patients” is a list of what we can do to help ourselves, ranging from how to choose our prostate cancer treatment up to how we can maximise our chances of response. This is a “rough” guide: not really a proper authoritative guide. Experts may write definitive guide books. I am no expert, I am a fellow traveller on the prostate cancer journey: all I have done is to reflect and search for answers. And all I can offer is a personal opinion and some sign posts to more authoritative sources. There is a key message in this book: we need to be “active” patients.

I hope other fellow travellers, on the same prostate cancer journey, may find the shared information useful. The book is also intended for the close male relatives of prostate cancer patients; they need to give some thought to their increased risk of prostate cancer, and start working on reducing it. They also need to consider whether they want to go for screening, and how they would manage the screening results.

The story of my prostatectomy

Sunday, 23 October 2016 (the day before)

The robotic prostatectomy is due tomorrow. Alarm clock set for 5am: shower and the last sachet of Vitaflo pre-load carbohydrates. Then off to the hospital.

Have I made the right treatment choice?

I accepted the proposed robotic prostatectomy because I felt I disliked surgery less than radiotherapy or androgen deprivation therapy. But, it is possible the prostate cancer has already extended beyond the capsule of the prostate or has spread to the lymph nodes. It is also possible that adjuvant or salvage radiotherapy will be proposed after the surgical procedure.

The thing is, the prostate cancer has not given me any trouble so far, it was an unexpected finding when I went to my GP and asked to check my testosterone levels (it seems all problems men have later in life are due to the “andropause” and testosterone supplementation might be the answer). The GP said I would need to do a PSA test as well, as he would not prescribe testosterone replacement if my PSA was abnormally high. In the end the testosterone was in the normal range but the PSA was quite high (21 ng/ml). The obvious thing to do was to ask for a repeat PSA test: surely it was a mistake in the lab. The second PSA was a bit better (15 ng/ml) but still quite high. I was told I would be mad if I refused to be investigated with prostatic biopsies. I am a medical microbiologist: the only men with prostatic biopsies I see are those returning to hospital with post-biopsy sepsis. I tried to buy time, I pleaded for a multiparametric MRI: the MRI showed a lesion in the prostate. At that stage I was really trapped: I could not turn down the “offer” of prostatic biopsies, could I? The urologist also requested a bone scan, because the MRI had shown a possible lesion in the pelvic bones, though not typical of metastasis.

Thanks God the bone scan did not show evidence of metastases. The biopsies were transperineal (not the more common transrectal type) as this was thought to be a better way to reach the anterior part of my prostate, where my “lesion” was. The biopsies were done on 12 September under general anaesthesia. I left the hospital a few hours later with a big haematoma over the perineal and scrotal area, and pissing blood. Cold packs seemed to help to reduce the haematoma swelling and the gross haematuria stopped a few hours later, after I passed an obvious blood clot with my urine. Blood in the sperm continued for more than a month, but it looked like “old” blood.

I went to my outpatient appointment to discuss the histology result with the understanding that, despite my high PSA, I still had about a 50% chance of not having a prostate cancer. Surely, I did not have a prostate cancer: I am “only” 60 and very fit (gym five times a week), not overweight and I follow a good healthy Mediterranean diet (I am a British Italian, if it makes sense: I have both nationalities and I feel a bit of both). Also, I do not know of any male relatives who had prostate cancer. For years I have taken vitamin D supplements, which should reduce the risk of prostate cancer. And have I mentioned that for years I had taken a glass of pomegranate juice at dinner, having read it could reduce the risk of prostate cancer?

So, what will happen tomorrow? The surgeon has said he would like to do a lymph node dissection as well. It seems it could help, even if (I think) I am still categorised as “intermediate” risk (Gleason score 3+4, hopefully T2 stage but cannot be sure, PSA mean value 17 out of 4 tests). But what if the tumour is already extending outside the prostatic capsule (the histology report mentioned this might be the case on the left side) or has already spread to the lymph nodes? What if my surgeon says I need radiotherapy as well? I have a mild form of ulcerative colitis and this might be exacerbated by radiotherapy. And what about the other radiotherapy side-effects and long-term risks?

The discussion about my treatment options sounded a little bit like this: we are going to give you a “beating” (unavoidable side-effects from any of the treatment options) but you have a “choice”. We can beat you with a wooden stick (prostatectomy) or with an iron bar (radiotherapy). But, if you choose the wooden stick because you think it is less painful, we still reserve the right to use the iron bar later. Should I have gone for a single beating with the iron bar?

I am a bit worried about tomorrow. I might be in the 5% group with more serious surgical side-effects. Will I really ever recover my continence? It feels to me I have run out of luck. I agreed to a PSA test because I was confident it would be normal. I asked for a repeat PSA test because surely the high result was attributable to sex the night before. I asked for an MRI because a normal result would have allowed me to refuse prostatic biopsies. I accepted prostatic biopsies knowing I still had a 50% chance of being clear. I have lost all the game rounds so far. Will I lose the next game? I am not a football fanatic, but I work in Sunderland, a city whose football team has often struggled at the bottom of the Premiership table. I know that when a football teams starts to lose games repeatedly, sometimes it never stops until you get relegated to a lower division. Will I lose my next game (surgery)? Will I get bad news again?

Monday, 24 October 2016 (day 0)

Surgery day. I got up at 5:15am. Arrived at the hospital at 7am, but surgery was scheduled for 1pm. Change of plan: my urology consultant said that on reviewing my MRI and histology report he thought it would be satisfactory to do a nerve-sparing procedure without lymph nodes dissection. Sounded like good news: the risk of complications should be a bit lower and recovery hopefully a bit faster. Let us hope the excision margins will be clear. I was a bit nervous. I also thought I had easy veins, but the anaesthetist had to try twice. It was really nice to see both the urology consultant and the anaesthetist before the procedure, and to hear reassuring words from both of them.

I woke up at about 5pm in the recovery room and I had pain and nausea. I was transferred to the urology ward two hours later. Margherita, my wife, was there waiting for me. Unable to eat, I had sips of water through the night.

Tuesday, 25 October 2016 (day 1 post-op)

Intermittent sleep during the night. My abdomen was bloated and tender when I moved. Electric beds are great: I raised the back support when I wanted to sip water, then I lowered it again. I could not figure out how to stand up and walk. For breakfast I only managed a few spoonfuls of yogurt.

The nurse came to see me later in the morning and fitted a leg catheter bag; she then showed me how to drain it and how to connect to a larger night bag. She also encouraged me to stand up and sit on a chair, but I felt terribly sick and nauseous: I asked for some anti-nausea medication (I think they gave me some cyclizine) and returned to bed.

However, you need to be able to stand and walk, if you want to be discharged home, so I tried again on my own, just standing briefly and then a few steps. Each time a few more steps (to the window first, then to the door). I was in a urology ward, but none of the other five male patients in my bay seemed to be prostatectomy patients, probably because prostatectomy patients are discharged quickly.

It was now clear I had three challenges. Firstly, getting out of bed was difficult and painful. I had six abdominal wounds at the site where the robotic arms had been introduced. The normal way of getting out of bed using the abdominal muscles did not work: it caused real pain and it could cause surgical hernias. It seemed that the only way was turning on a side and then rising sideways. Even better if somebody helped me and pulled my arm. See pictures on how to get out of bed at this website: https://healthonline.washington.edu/document/health_online/pdf/ Activities-Daily-Living-After-Abdominal-Surgery.pdf

Secondly, I was really bloated with air in the abdominal cavity and inside the bowel. The bowel does not like surgery, it stops working and it fills with gas. To get better I needed to start passing wind and resolve the constipation. Easier said than done, as there is no specific effective medication. Rising from bed to sit and stand seemed to help and I tried to pass wind whenever I could (with modest results): I occasionally burped. Peppermint tea was recommended, but was not available in the ward. I tried to eat a bit for lunch but I only managed a soup and a few spoonfuls of fruit jelly.

The third problem was that when I stood or sat I had a really severe pain in the left shoulder (later in the right shoulder as well). Initially I thought I had pulled some muscles in my effort to rise from the bed sideways, but the nurse said it was due to my surgical procedure. I checked back the written explanatory note given to me weeks earlier: air is used to inflate the abdomen and allow the surgeons to operate and the residual trapped air can move just below the diaphragm and can cause referred pain to the shoulders! It really limited the time I could sit or stand, as the pain was severe. The pain disappeared if I laid back in bed, as the air presumably moved away from the diaphragm.

My urology consultant came to see me at lunchtime, I was really grateful for the visit and the update. He said that surgery was successful, though challenging, as there were adhesions between the prostate and the adjacent structures, due to the bleeding that took place after the transperineal prostatic biopsies. He confirmed that he spared both nerve bundles and the lymph nodes. The prognosis was good (I hoped he had not said this just to boost my morale), but we will know for sure only when the histology report becomes available. What I need (for the best probability of cure) is a report saying the tumour is entirely within the prostate with clear resection margins and no invasion of the seminal vesicles. The consultant also said I could go home later that day, no reason to stay for a second night, but I asked to stay because the pain was still severe when sitting or standing.

Wednesday, 26 October 2016 (day 2 post-op)

My wife Margherita drove me home in the late morning: this was a 40 minute journey. The difficult bit was getting in and out of the car, because of the abdominal pain, especially when I moved. When I got home I found a few “get better cards”: one from some neighbours really captured the way I am (see below).

A list for Giuseppe:

1. Get better soon

2. Rest

3. Get better soon

4. Relax

5. Get better soon

6. Enjoy being looked after

7. Get better soon

8. Take it easy

9. Get better soon

10. Do what you are told

11. Get better soon

I know how much you like lists!

Lots of love

I always like to plan, to consider all options in detail, and to make checklists. This strategy really applies well to all life scenarios, whether it is about buying a fridge or choosing a surgeon.

I sneezed once, it was very painful: I really hoped I would not get a respiratory or gastrointestinal infection over the next few weeks. I was terrified at the thought of having to cough or vomit. Still I had not had bowel movements since Monday despite the sodium docusate and the senna tablets from the hospital. The codeine given for pain control did not help in this respect, as it can cause constipation: I decided to manage the pain just with paracetamol (I thought I could, and the only strategy to control the shoulder pain was to lie down) and I decided to take some Movicol sachets as well (they had done a good job when I had been constipated after the prostatic biopsies).

Thursday, 27 October 2016 (day 3 post-op)

First bowel movement! It took three tablets of docusate sodium, three tablet of senna and three sachets of Movicol. This was good for the body and the spirit. The abdomen was still tender, but possibly a bit less bloated. Shoulder pains attributed to intraabdominal air were still a problem, when sitting and standing, but pain was less severe than two days earlier.

A friend came in to say hallo in the afternoon. It has always been so good to speak to him: he also had prostate cancer surgery a few years before, from which he had made a good recovery. As much as I find it useful to read books written by prostate cancer survivors, having a chat is so much better. And you can compare notes on how long it might take to recover and what is the best coping strategy. He told me he had felt much better, in a way, when he was able to tell all his friends and colleagues about his diagnosis and the treatment plan, so that they could understand why he had not been his usual self. Knowing there is a treatment plan always helps, and it helps when the date for surgery is set. Although there is usually no great urgency for the surgical procedure to be done immediately (the cancer usually evolves and progresses over months and years), if one has to have cancer surgery, one might as well do it soon, because then you know you have turned a corner and, although you will be initially unwell for a while after surgery, then the recovery begins, and surgery might be a cure.

I had a similar but not precisely identical experience. I also found it useful to tell friends and colleagues at an early stage. In fact, I told some of them even before the diagnosis was confirmed: a little bit of sympathy is always helpful, and talking to others is almost always good, it helps to clear your mind about what you want to do and you often get good tips and suggestions. The first five to seven days after my diagnosis was confirmed I was utterly demoralised and depressed, I cried a bit with my wife, I felt I was “drowning”. I thought at some stage I should seek medical treatment for depression. Part of the problem was my “Italian” mentality: Italian patients often get all the radiology and histology reports immediately, even before seeing their specialist, thus (if they want) they can go to their specialist armed with information and a list of questions. I had gone to my specialist appointment, when a “robotic prostatectomy” was proposed, believing I still had a 50% chance of not even having cancer. And then, once given the diagnosis I was really worried: I was not worried primarily about the prostate cancer, which had not given me any trouble yet. I was really worried about the treatment options, all associated with unavoidable side-effects and consequences. And I felt I was a “prisoner of the system”, and that things were happening to me regardless of my opinions and values. I had never wanted a PSA tests but I had been “tricked” into accepting one (it probably was a good thing I did it, but this is not how it felt at the time). I tried hard to avoid prostate biopsies and I pleaded for an MRI first: surely it would show nothing and I could ask for just further repeat PSA tests. Eventually, when the MRI showed a lesion in my prostate I had no other reasonable option but to accept the proposed prostatic biopsies. And then, with a confirmed prostate cancer diagnosis, I was told that on the basis of my age (60), history of ulcerative colitis (radiotherapy might be less well tolerated) and my Gleason score (3+4) and stage (probably stage two) I really should accept the offer of surgical treatment (robotic prostatectomy) rather than any of the radiotherapy options or androgen-deprivation therapy. In those difficult five to seven days of depression and despair, there were three things that kept me afloat: having a wonderful partner (my wife Margherita), being able to share my worries and concerns with friends and colleagues (many of them gave me useful tips) and going to the gym. I always felt I was at least a bit better after sweating in the gym and I had to be fit, if I was facing a major surgical procedure.

Part of my recovery from the depression process was to ask for a copy of all my relevant reports: MRI, bone scan and histology report. I got them five days after the outpatient appointment during which I had been told I had prostate cancer. Getting a copy of those reports made a lot of difference: I felt power and control were shifting towards me again. Armed with those reports I could do online searches for relevant publications, or just look up the treatment recommendations for patients with my cancer stage and grade in various textbooks. I also could seek a second opinion now that I had the reports. I decided to go and see a different urology surgeon: this was easy for me as I could ask a colleague working in my hospital. And so I did, I asked one of my colleagues who was recommended to me for his interpersonal skills: he was wonderful, he talked to me and my wife for 30 minutes and, armed with all the facts, I could now ask more relevant questions. I was particularly anxious to explore what might happen after surgery: surgery cannot guarantee a cure, adjuvant or salvage radiotherapy or androgen-deprivation therapy may still be required at a later stage. I felt I had preferred surgery over radiotherapy, but is it worthwhile choosing surgery over radiotherapy when there may be a risk of still needing radiotherapy after surgery? In that scenario, I would end up suffering from the cumulative consequences and side-effects of two types of treatment, not just one. I felt this was the most important choice I had ever had to make about my health during my life until that point: this was likely to affect the length and quality of my remaining life as well as my ability to fulfil my life goals. Although the second specialist visit had doubled my opportunities for asking questions, I thought I might as well seek a third and fourth opinion from specialists in a different country: sometimes there may be significant differences in approach and it might be interesting to hear about them. Between my bone scan and my biopsies I had spent a short holiday in Italy: I took the opportunity to go and see an eminent local specialist who also happened to be the chair of a European specialist body. It was an opportunity to go and see him for a chat, but I did not have at that time my reports: as agreed, I e-mailed my reports to him and he sent his treatment recommendation. I also phoned a friend who is a urologist based in Rome: we had a long telephone conversation. I also had chats with two friends who had undergone a radical prostatectomy (though not a robotic one) recently: they told me about their experiences. The second, third and fourth specialist recommended precisely what my urology consultant had recommended: a prostatectomy. My reading of the literature also suggested that surgery was probably the best option for me, or at least the option I disliked the least. Talking to the two friends who had undergone a prostatectomy was also extremely useful: they had recovered well and there were still prospects for a good life after prostatectomy, a life in which you can still have reasonable continence, do the things you like, even having a sex life. Now my morale changed and, while still a bit anxious about surgery, I was no longer depressed. The prostatectomy was no longer a procedure “imposed” on me: it was my choice, it was what I felt was the best option for me.

My only remaining reservations were about the precise surgical modalities. My surgeon had recommended removing at least one of the nerve bundles and had suggested that lymph node dissection should be considered. I was particularly worried about the lymph node dissection: it may carry some small additional risks and there may be no benefits in patients at low risk of lymph node involvement, but there could be significant benefits in high risk patients. I was thought to be an “intermediate” risk patient. Although the risk of significant side-effects from the lymph node dissection was low, there was a small risk. And maybe lymph node dissection would delay my surgical recovery, just at the time when an uneventful timely recovery would be so good at boosting moral. So, should I let my surgeon know that I had concerns or preferences about the possible lymph node dissection? After extensive searches and reading I had some level of knowledge on this but, as we all know, sometimes having a little knowledge can be a dangerous thing. It would have been presumptuous of me to think that I knew better than a very experienced urology consultant.

In the end, what I did was to write a one-page letter to my consultant. I was not telling him what to do, I had trust in his judgment, I was telling him about my fears and my values. This is what I said in my letter about the proposed lymph node dissection: