Hello I had my op on 2nd of July got my follow up appointment for 20th of august ,surprised to see I won't be seeing my consultant who also did op ,have not spoken to him since hour before my op is this normal
I don't think there is a "normal" as such. Arrangements in different parts of the country and different Trusts can vary.
I don't know what the arrangements are where you live, but I can tell you my experience as something you can compare to.
I was referred to a urologist by my GP. The urology department at my local hospital trust arranged all investigations and confirmed the diagnosis. The urologist discussed treatment options with me and I chose surgery. I was then referred to a surgeon at another hospital trust.
Laparoscopic prostatectomy is an operation that needs a lot of expertise and there aren't many surgeons capable, so not every trust has one. I had the operation in the hospital where the surgeon worked.
After the surgery, I was seen by the surgeon at the hospital where he worked the after 3 months. He checked that I was recovering OK and discussed results with me.
Somewhat unusually, I had a very bad infection immediately after the surgery. Catheter removal was postponed twice and bleeding would not stop. I was admitted to hospital twice. The hospital I was admitted to was my local one.
After 3 months, I never saw the surgeon again. All the follow up appointments were with the urology department at my local hospital. I had PSA tests every 3 months at my GP surgery for the first year, then every 6 months. I don't think that everyone is now asked to go to the hospital every six months. If you don't have appointments, you should have contact details for them if you have any queries or problems.
You are supposed to have a GP review at 6 months.
I was discharged from the hospital at 5 years, but carried on 6 monthly PSA tests at my GP surgery.
If your surgeon works in the same hospital as the urology department that arranged your investigations and carries out your follow up care, then you won't need to see the surgeon again. Your urology department will have the operation results.
I hope this makes sense.
SOMEONE should see you after your operation and you should have a PSA test preferably prior to the appointment so that the result will be available at the appointment. Don't worry if the PSA test hadn't been arranged, less than 3 months following surgery for a PSA test is a arguably too early.
PSA following surgery should be undetectable, but at less than 2 months there may still be some remaining and if it's detected at this time, in my opinion, could be more anxiety provoking than informative. My PSA was undetectable at 3 months.
At your first appointment, you should be told the results of the laboratory report of your operation. The tissue that the surgeon removed is examined microscopically. Three things can be reported.
1 The report should say if any cancer cells have crossed the edges of the removed prostate gland. This is stated as either positive or negative "margins" . You want to hear negative, i.e. it appears the surgeon has removed all the cancer cells.
2 The report will give another Gleason score. this will hopefully be the same as the score from your biopsy. If it's less, then even better. Even if it's the same total score. It might be a different order. E.g. if your biopsy score was A + B = C, then your new score may be B + A = C.
3 If and only if, the surgeon has removed other tissue part from the gland itself, then the report will say if there cancer cells in them.
If you were told you would have or you asked for nerve sparing surgery. The operation report should say if this was successful or not.
If they don't offer this information, ASK.
At your first appointment you can discuss any problems you may be having which could include pain, difficulty urinating, incontinence or erectile dysfunction (ED).
If you're having problems with control that's not apparently improving by the time of the appointment, then if necessary you can be referred to a Continence Service.
It is highly likely that you are currently suffering ED, it would be unusual if you weren't. If recovering function is of concern for you, then it's my experience that it would be a good idea to adk to be referred to an ED clinic. The chances of recovering function depend on undertaking erectile rehabilitation as soon as possible. Some recommend as soon as the catheter is removed. There are physiological reasons for this.
You may wish to see your GP about this before your first hospital appointment, he or she can prescribe a PDE5 inhibitor for a start. You may have heard of Viagra.
I appreciate your intent to offer reassurance. Which I note you do consistently.
Everybody who has had treatment for prostate cancer should have continuing "follow" up for many years after treatment finishes.
This may be with the oncology department or it may be with the Urology department of a local hospital it it has a urology department.
Oncologists oversee radiotherapy, chemotherapy, and other "medical" treatments. Radiotherapists carry out radiotherapy. Surgeons carry out surgery. They are all different roles.
If the team responsible for your follow up detect any problems and this is not the oncology dept then they will refer to an oncologist if necessary.
You should have had a cancer review with your GP six months after treatment.
Not everybody these days has to attend appointments at a hospital dept however. Recently, some cancer services have implemented self management programmes, known as Risk Stratified Follow Up, (RSFU). In this patients should be first assessed to see if self management is appropriate.
RSFU includes regular PSA tests at your GP surgery, results will be sent to the hospital.You should also have contact details for someone in the hospital you can call on for queries or problems. After 3 to 5 years, all being well, the hospital will discharge you and subsequent monitoring will be through the GP.
Follow up from surgery is different from follow up from RT.
The surgeon needs to assess if the patient has made a satisfactory recovery from the specific risks of surgery.. That's their legal responsibility.
Tests are carried out on the tissue removed by the surgeon. The patient is entitled to know the results of these tests as they indicate how successful the surgery has been and/or if further treatment is needed. PSA tests are needed for many years after. PSA should become undetectable and stay undetectable.
For RT/hormone therapy, there are no such tests to see how successful. the treatment was or is. It's more important then that PSA testing continues as this is a way of monitoring for the disease. PSA is usually detectable following RT, it's a matter of whether it starts rising and how far and fast it rises.
I'm not surprised then that you haven't seen the oncologist. If you've seen nobody at the hospital since treatment, I am surprised, but not concerned. If you've not been having regular PSA tests, I'm shocked.
Anyone who has surgery needs to be seen by someone at a hospital, whoever they are, who is qualified to discuss their surgical results with them. Not being given these is a possible cause for complaint.
Not having PSA tested regularly after RT is a possible cause for complaint.
It may seem reassuring for someone who's not seen anybody post operatively to be told you've not seen anybody either, but I'm afraid it's misleading. They need those results which, hopefully, can be very reassuring.
phew, what a relief to know you're getting proper follow up.
Yes I agree it would have been reassuring to see the Oncologist after treatment.
I find that health professionals tend to focus on the physical aspects of diagnosis, traatment after care etc with little awareness of the psycho-social or financial consequences.
Macmillan are working within the health professions to raise this awareness and I know many NHS organisations have "Patient Experience" groups. CCGs and trusts are under obligation to "engage" with the public about their health services.
Sometimes it feels like it's just lip service they're giving to this so that the "engagement" box is ticked. Sometimes it seems genuine, but the wheels of cultural change grind slowly.
There are a variety of roles that Macmillan has for volunteers to promote improvements in cancer services. If you've the time or the motivatiion you can find out more by clicking here.
It’s true hospitals don’t have the time or the capacity for dealing with the psycho-social and financial consequences, but there are lots of “third sector” organisations that can help.
Macmillan does provide quite a lot of services for cancer sufferers and have Information Centres around the country, have a buddying service and run a Hope course for people living with or beyond cancer. Near where I live there are also two cancer charities that provide all sorts of services, support groups, counselling, activities, there are also “Maggies” centres. Other organisations such as Age UK and CAB can help.
The problem lies in that the hospitals don’t fully assess peoples’ needs holistically and don’t make them aware that these facilities exist.
This online community is also a good facility for those that can’t get out or don’t really want to join a support group. Prostate Cancer UK run a similar online community for men (and women) affected by prostate cancer.
