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Disappointing news - cancer found in lymph node

User
Posted 08 Jan 2020 at 09:59

I had an appointment yesterday with the urology department at the hospital where they performed my prostate cancer surgery. They were generally pleased with my slow but steady recovery from the surgery itself. However, some of the news they shared with me was not entirely as good as I had hoped for.

They successfully removed the prostate and the lymph nodes as planned, but they had found cancerous cells in one of the lymph nodes and because of this they are referring me back to the oncology department at the referring hospital to investigate further treatment options. Treatment could involve hormone therapy or radiotherapy, or a combination of both. The term used was "adjuvant therapy" which I understand just means "extra" treatment after the primary therapy which was the prostatectomy.

Once again, I was told that I was young (!) and otherwise in good health, and that therefore the chances of an eventual curative outcome remained high, it would just be taking longer than originally planned.

My main feeling is one of disappointment, as I had hoped that I wouldn't need further treatment, but I will just have to deal with whatever comes next. I am now waiting for the oncology appointment.

As I mainly work from home I was already planning to start back on a part-time basis from next week, and I imagine that the part-time arrangement may need to go on for a while around whatever new treatment I have.

User
Posted 08 Jan 2020 at 12:58

hI, David, I am on hormone therapy for life and also chemo just now as well, working self employed part time, which can get physical at times too. I don't have any real problems with any of the treatments. Hope this may be of some use to you. The only reason I don't go back full time is because I gave a load of work away thinking I would be unable to do it all. You may find treatments are not as bad or time consuming as you first think.

I also had part of my colon removed with bowel cancer tumour in August, back living and working as normal within 5 weeks. I think if you are youngish (56) and quite fit, it makes the world of difference to how you cope with treatments.

 

Edited by member 08 Jan 2020 at 13:13  | Reason: Not specified

User
Posted 08 Jan 2020 at 13:26
They found one cancerous lymph node in my post operative histology report, but here I am, eighteen months later, cancer-free. Maybe the surgeon got it?

Keep calm and carry on.

Best of luck.

Cheers, John.

User
Posted 08 Jan 2020 at 19:03

Hi David, sorry to read this. My post op histology wasn’t great either and I have ended up having ADT and salvage radiotherapy. Side effects are certainly increased but I wanted another curative attempt. Have a read through my profile for more information.

My recent scores show things are stable.

Not great news, like you I had hoped the surgery would be the beginning and end of my cancer journey. 
I would advise doing some research and write down some questions for oncology.

If radiotherapy is planned ask what the dose will be and what pelvic areas will be targeted.

Ask if they plan any ADT before and/or after radiotherapy and for how long.

 

What is your current PSA?

Hope this helps.

Ido4

User
Posted 08 Jan 2020 at 21:14
DaveBaxt, some surgeons automatically remove a small number of pelvic lymph nodes during RP, just to check and confirm staging. A smaller number of surgeons only remove lymph nodes if there are suspicions.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Jan 2020 at 21:38
Hi David,

adjuvant treatment means that it is additional treatment that was either planned before the primary treatment even happened (e.g. some men decide to have surgery knowing that this will immediately be followed up with RT) or is arranged straight after primary treatment because the results indicated that the primary wasn't enough to eradicate the cancer (e.g. your situation). If someone has primary treatment that appears at first to have been successful, but then two or 10 years down the line the cancer recurs and additional treatment is needed, this is called salvage treatment.

The pathology result shouldn't make any difference to your plans to return to work part time and then full time. Oncology may just want to wait to see what your next couple of PSA results are. Alternatively, if they recommend RT with HT you will probably have the hormones for 3 or 6 months before the RT starts so work should not be affected. Even when you have RT, many men just carry on working through it; if you work from home it should be easy enough to plan your day. John had his RT session every morning at around 8.30am on his way to work, he worked full time throughout, went to the gym every evening and carried on playing rugby. Towards the end he needed a nap at his desk a couple of times and I guess if he had worked from home he would have gone for a siesta but the office chairs weren't very comfortable!

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

User
Posted 13 Jul 2021 at 15:02
Hi MCD2021,

Yes, I am doing well, thanks. I am still being monitored with a PSA test every few months, but currently the PSA level is "undetectable" which is what everyone wants to hear.

All the best

User
Posted 13 Jul 2021 at 15:32

Fantastic news. Long may that continue! Take care and all the best

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User
Posted 08 Jan 2020 at 12:25
Maybe click my picture and read my profile ?

If life gives you lemons , then make lemonade

User
Posted 08 Jan 2020 at 12:58

hI, David, I am on hormone therapy for life and also chemo just now as well, working self employed part time, which can get physical at times too. I don't have any real problems with any of the treatments. Hope this may be of some use to you. The only reason I don't go back full time is because I gave a load of work away thinking I would be unable to do it all. You may find treatments are not as bad or time consuming as you first think.

I also had part of my colon removed with bowel cancer tumour in August, back living and working as normal within 5 weeks. I think if you are youngish (56) and quite fit, it makes the world of difference to how you cope with treatments.

 

Edited by member 08 Jan 2020 at 13:13  | Reason: Not specified

User
Posted 08 Jan 2020 at 13:26
They found one cancerous lymph node in my post operative histology report, but here I am, eighteen months later, cancer-free. Maybe the surgeon got it?

Keep calm and carry on.

Best of luck.

Cheers, John.

User
Posted 08 Jan 2020 at 17:48

Sorry if I am hyjacking your thread , but may I ask a question. As they removed your lymph nodes , did they suspect there was a problem before using MRI, bone scans . Just wondering if this can be missed?  before deciding what treatment you decided on .Just trying to understand what all the different test results mean.Hope everything works out and good luck with the future.

User
Posted 08 Jan 2020 at 18:09

Hi DaveBaxt, my story in brief is this: after about 7 years of PSA monitoring due to BPH (enlarged prostate) my PSA level jumped suddenly, so I was referred to a urologist by my GP. The urologist ordered an MRI which showed a suspicious area in the prostate. I then had a transperineal biopsy that focused on the suspect area, and found evidence of cancer (Gleason 4+5, which I was told was "high" and "aggressive"). Due to the location of the cancer in the prostate, the consultant recommended removal of the lymph nodes. Hope that helps, and thanks for your good wishes.

User
Posted 08 Jan 2020 at 18:51

In my case the MDT suspected spread to the lymph nodes even though nothing was seen on the scan due to my relatively high PSA (32 at diagnosis). Hence the recommendation for me of HT followed by "wide beam" EBRT, rather than surgery.

If it's any comfort, I found RT to be a reasonably trouble-free experience. The only real side-effect was some bladder irritation and an increased frequency of peeing (up every 45m all night) towards the end of RT, but it quickly subsided once RT had finished.

Best wishes,

Chris

Edited by member 08 Jan 2020 at 21:17  | Reason: Not specified

User
Posted 08 Jan 2020 at 19:03

Hi David, sorry to read this. My post op histology wasn’t great either and I have ended up having ADT and salvage radiotherapy. Side effects are certainly increased but I wanted another curative attempt. Have a read through my profile for more information.

My recent scores show things are stable.

Not great news, like you I had hoped the surgery would be the beginning and end of my cancer journey. 
I would advise doing some research and write down some questions for oncology.

If radiotherapy is planned ask what the dose will be and what pelvic areas will be targeted.

Ask if they plan any ADT before and/or after radiotherapy and for how long.

 

What is your current PSA?

Hope this helps.

Ido4

User
Posted 08 Jan 2020 at 20:31

Thanks for that. Which has nicely explained it. I am beginning to understand a bit at a time. Thanks again.

User
Posted 08 Jan 2020 at 21:14
DaveBaxt, some surgeons automatically remove a small number of pelvic lymph nodes during RP, just to check and confirm staging. A smaller number of surgeons only remove lymph nodes if there are suspicions.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Jan 2020 at 21:38
Hi David,

adjuvant treatment means that it is additional treatment that was either planned before the primary treatment even happened (e.g. some men decide to have surgery knowing that this will immediately be followed up with RT) or is arranged straight after primary treatment because the results indicated that the primary wasn't enough to eradicate the cancer (e.g. your situation). If someone has primary treatment that appears at first to have been successful, but then two or 10 years down the line the cancer recurs and additional treatment is needed, this is called salvage treatment.

The pathology result shouldn't make any difference to your plans to return to work part time and then full time. Oncology may just want to wait to see what your next couple of PSA results are. Alternatively, if they recommend RT with HT you will probably have the hormones for 3 or 6 months before the RT starts so work should not be affected. Even when you have RT, many men just carry on working through it; if you work from home it should be easy enough to plan your day. John had his RT session every morning at around 8.30am on his way to work, he worked full time throughout, went to the gym every evening and carried on playing rugby. Towards the end he needed a nap at his desk a couple of times and I guess if he had worked from home he would have gone for a siesta but the office chairs weren't very comfortable!

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

User
Posted 13 Jul 2021 at 10:58

Thanks to everyone for the information in this post. My partner (55) has just had a radical prostatectomy with removal of lymph nodes, and he has just been told the cancer had spread into one of the nodes. He was told it was ‘very aggressive’ with Gleason score of 4+3. Unfortunately, had to wait for surgery due to Covid. He is now 19 days post-op and still suffering with severe continence issues, so feeling very low. Doing pelvic exercises but if anyone has tried one of the machines such as Innovo, please let me know. Next step is PSA test in a couple of weeks. I don’t know how much we can hope that it hasn’t spread further, but trying to stay positive. Unfortunately, as you all know, it’s just something we now have to live with and monitor. 

User
Posted 13 Jul 2021 at 11:21

Hello, that sounds similar to what happened to me, in terms of cancer having spread to a lymph node. I was referred back to the oncology department and had 6 months over hormone therapy injections and six weeks of radiotherapy. Your partner may be offered similar follow up treatments.

The first few weeks after surgery can be very difficult, not least because of the pain and discomfort, especially if you try to do too much too soon (as I found to my cost!). Your partner has had major surgery, and it takes time to recover, however fit you may have been beforehand.

As for the continence issues, things do get better, though for some people (like me) it only improves gradually over months. Perseverance with the pelvic floor exercises is important (even though it can be boring!). i am now 18 months post-surgery and still have to use a thin pad to cope with "dribbles", but I manage to function perfectly normally otherwise.

Best wishes to your partner and to you

Edited by member 13 Jul 2021 at 11:24  | Reason: spelling

User
Posted 13 Jul 2021 at 11:28

Hi DavidF1955, thanks for your response. I take it you are now doing ok after your treatment? I’m going to discuss HT and radiotherapy with the consultant as they sound to be the standard. I’ve kept telling him he’s just had major surgery as he is really impatient and a keen cyclist, but thankfully the scars have healed really well and swelling has disappeared completely. 

RE: continence, thanks for the realistic advice. I was reading that lots of people were fine afterwards so it’s good to know he’s not on his own. Every time he stands up means a wee into a pad! He’s getting a little more control and is able to ‘push’ a good flow out now when he reaches the loo, so hopefully time will continue to show improvements.

All the best to you and hope you remain well x

User
Posted 13 Jul 2021 at 15:02
Hi MCD2021,

Yes, I am doing well, thanks. I am still being monitored with a PSA test every few months, but currently the PSA level is "undetectable" which is what everyone wants to hear.

All the best

User
Posted 13 Jul 2021 at 15:32

Fantastic news. Long may that continue! Take care and all the best

 
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