My husband has been on the Flair trial for three and a had years now, currently doing ok but has had some major health issues during that time including fungal pneumonia, pneumonia and pleural effusion ( the last two this year).
In addition to having CLL he attends a a urology clinic because he has a raised PSA and enlarged prostate. Two and a half years ago he had an MRI which showed a 'shadow' on the prostate but the consultant he was seeing continued to monitor him every six months and said that the prostate was smooth so cancer was unlikely and as the biopsy might render him open to infection it was not a good idea.
Last month he saw a new consultant who is keen to do a Transperineal biopsy as his PSA had gone up from 10.5 to 11.3. He also ordered a MRI which has shown there is no change in the prostate from two and a half years ago. We have questioned the need for the biopsy because of the possibility of infection unnecessarily and also he would have to be off the ibrutanib for quite a time before and after due to not inconsiderable bleeding. However, we saw his oncologist this week who has had a letter from the urologist and she agrees he should have the biopsy. We're surprised she agrees really and wonder if she just doesn't want to go against another doctor's wishes.
Has anyone else faced this situation? We would really appreciate any input.
We are so grateful for this forum, thanks so much.
Written by
Poohey
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I have a fried that had a biopsy done on his prostrate. He has no other health concerns but they still put him on a course of antibiotics. If your CLL specialist has no problem then I wouldn’t worry to much as I’m sure they will put him on some strong antibiotics to insure no infection sets in.
I'm in a similar position, but my PSA is not as high. I am in remission from CLL, and no longer take Ibrutinib. My prostate is enlarged and I take alfuzosin. The urologist wanted me to have a biopsy with antibiotics to ward off the risk of infection.
I postponed the biopsy because:
a) I've been run down and prone to infections, like your husband. I didn't feel up to be being poked and scraped internally.
b) the CLL specialist said it was up to me, but do take antibiotics, but also my PSA was not as high as your husbands.
The other factor that I considered was, supposing the biopsy shows I have prostate cancer, what then?
If it is an aggressive form then it has probably spread, and an operation, whether successful or not, has a good chance causing incontinence, sexual dysfunction and scars. I feel vunerable enough with nightly urination, minimal sexual function as it is. My wife has been very loving and supportive, as I am sure you are to your husband, without this I would feel even more lessened as a man, but I fear an operation would leave me with even more side-effects and that I would find difficult to adjust to.
On the other hand, if I had the slow form of prostate cancer, which is more usual in older men, I'm 72, then I'm not going to die of it.
I haven't come to a firm decision. I have started IVIG to boost my immune system and I am starting to brighten up mentally, emotionally and physically, perhaps I might consider the biopsy. But again, would I be any better off knowing if I had cancer? I doubt it.
Thanks so much Peter. So much of what you say is in line with our thinking. My husband has made the decision not to have the biopsy at the moment. The fact is that the MRI has not changed in two and a half years and the PSA although higher than normal has only changed 0.8 in six months. He's currently enjoying a relatively normal life at the moment with good blood levels and like you doesn't want to upset things. And as you say if there is a slow growing cancer, there's then another decision to be made.
I can't help feeling that this new consultant, although very pleasant, is a bit gung Ho. We're going to see if they will monitor him with MRI investigation.
Thanks again for your input and best wishes to you and your wife.
Your kind reply prompted a couple of more thoughts.
I remember writing a post in which I wished for one doctor to have an overview of me rather than being seen by a range of specialists who were interested in bits of me. My urologist is very good but he is not particularly interested in my CLL or how I have coped with the treatment. The CLL specialist looks at one set of numbers, and the urologist, at another, and a neurologist at other ones and then they set sail on their courses of action.
The urologist arranges a biopsy because the PSA test is not reliable at predicting prostate cancer, scraping a few cells for analysis is. Like your husband, my PSA is only rising slowly.
If I were a young man of 40, I'd have a biopsy without question. At this age prostate cancer is often aggressive and an operation could not only save my life, but extend it for decades. It is a risk worth taking. But for me? No. I may have a 30% chance of cancer, but even if I do it is likely to be slow developing, in which case I see no point in being operated on. An intervention might save my life, or postpone my death, but what sort of life would I have?
As I get older and my body becomes worn out, I find myself making a choice between longevity and quality of life. Specialists are interested in finding solutions to what is going wrong, without always considering who the patient is in front of them. One of the gifts of illness is helping me to understand, and to come to terms with, what is important in my life.
I had an enlarged prostate several years after my diagnosis with CLL but my CLL is indolent and I have not been on any treatment for it. My PSA numbers were lower than your husband's but after some time there was a dramatic increase and my GP wanted more frequent testing. I did complain of frequent urination. 2 months after this increase I went into retention and had to have prostate surgery (HOLEP). It had been suggested before but I resisted partly because of loss of sexual function. I was on Tamsulosin for 2 years. I never had a prostate biopsy, but tissue from the prostate operation was analysed and found not be cancerous. In fact at no time was prostate cancer suspected.
M-m-m-m, big decision, there is another possibility. My PSA was 17 something, been a many years ago. My doctor was concerned about prostate cancer, but kept checking different things. I did not have prostate biopsied. Turned out I had prostatitis . This is an infection in prostate, my numbers are now normal.
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No longer eligible for FLAIR trial
CLL + Bladder cancer + prostate cancer 
Flair trial. Report from the field. 
Flair Trial - FCR first dose
