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Posted 3/10/2020 5:08 PM (GMT 0)
Hi

about 5 weeks ago my husband was diagnosed with prostate cancer, 55 yrs - PSA 84 in Oct 2019 then PSA 94 beginning of Feb and it has been a whirlwind time during which I’ve spent so much time googling and reading - the forum has proved both an encouragement and a source of wisdom for which i’m so thankful. We are meeting with the consultant this Saturday to go over my husbands histology report following his da Vinci robotic prostatectomy almost three weeks ago. His Gleason grade has remained at 4+3=7 but he has been upgraded to T3b from T2c. My husband doesn’t want to google and look up information as he is apt to panic so prefers me to and i’d value people’s thoughts ahead of our meeting with the consultant as regards the report - we are in the UK but blessed to have private health insurance through my husbands work - I dare say if we’d have used the NHS we wouldn’t have got to see the histology report which perhaps would have been a good thing as i’m going in circles studying information on lymphovascular invasion for starters. From my studying I would imagine that John will be offered adjuvant RT - he is hoping for a “it was a success - all clear” although I do keep reminding him his PSA check in 11 weeks time will be the deciding factor for the consultant also remind him that his Consultant has never used the words “all clear” rather “adequate cancer control” - I have lost several family members to cancer over the years and my Uncle died of PC at 69yrs whereas my husband has no experience of loved ones going through this disease. I’m so sorry for the rambling message it’s just i’m trying to remain positive and cheerful for my husband and children’s sake yet am secretly worried that this could have spread despite the radioactive choline PET scan prior to surgery being clear - the surgeon felt it best not to remove the lymph nodes nearby as clear in the scan !!!! Thank you so much !!!!!!!!

Ali

Adenocarcinoma present: Yes, acinar
Gleason score: 4 + 3 = 7
Tumour size and distribution: 47mm, widely involving the entire prostate
gland
Extraprostatic spread: Yes, focal, right anterior, right lateral and
left lateral (up to 8mm in width, 2mm in depth)
Bladder neck invasion: no
Seminal vesicle / vas invasion: yes, bilateral
Lymphovascular invasion: yes
Perineural invasion: yes
Apical margin involved: yes, bilateral
Base margin involved: yes
Circumferential margin involved: No
Urothelial neoplasia present: No
Pre-prostatic fat: Not involved
Lymph nodes: Not submitted
(Diagnosis):
Prostate, robot-assisted radical prostatectomy:
Acinar adenocarcinoma, Gleason score 4 + 3 = 7
Margins involved
Staging (TNM 8th ed.): pT3b pNx
Posted 3/10/2020 6:00 PM (GMT 0)
Welcome!! Sorry you have to be here, but you are very welcome to be here.
His pathology looks much like mine except for Gleason score.
I am sorry to say that "“it was a success - all clear”" Probably won't happen, and that's because of seminal vesicle, perineural invasion, extraprostatic extension, and positive margins.

You are probably right about radiation, but hopefully they will suggest ADT also.

The folks here are real friendly, ask any question.
Posted 3/10/2020 6:06 PM (GMT 0)
The "b" in pT3b is because of the seminal vesicle invasion.

Staging
Posted 3/10/2020 6:17 PM (GMT 0)
Welcome to our club--ladies are welcome too (there are several). Unfortunately it does look like ADT plus radiation is in his future--given the pathology. It's OK--he has every chance of being around for a long time.
Posted 3/10/2020 6:20 PM (GMT 0)
Thanks for adding that halbert!!

I forgot to mention that I'm a G9 and was diagnosed over 6 years ago.
Breathe, and research.
Your husband is in good hands.
Posted 3/10/2020 6:49 PM (GMT 0)
Welcome to HW, sorry you need to be here.

Like the other said - looks like more treatment will be needed, but that first PSA test will tell how quickly that needs to happen.

Do keep us updated on his progress,
Andrew
Posted 3/10/2020 6:59 PM (GMT 0)
Welcome CC. As you have gathered, the post-op path report had a number of adverse pathological features, and IMO it's likely that adjuvant treatment with radiotherapy and perhaps ADT are in the near future, after allowing some months for healing. I'm surprised that no nodes were removed, given your husband's G7 (4+3) biopsy, regardless of the PET scan results: one upcoming decision will likely be whether to irradiate the whole pelvis or just the prostate bed. His first post-op PSA may give his docs more info on choosing the best treatment going forward. You can ask whether the test can be moved up, say, to 8 weeks post-op. You docs may factor in the degree of continence and potency recovery in deciding on the timing for further treatment. I would suggest a consult with a radiation oncologist -- you can get a treatment plan in place even if the start date is undecided.

You also ask about the possible benefit of a genomics test, like Decipher, on the removed RP tissue if there is still no indication of local or distant mets. This test returns the risk category for metastases: low, intermediate, or high and may be of value in reaching a decision about adding ADT.

Please keep us posted. Wishing you all the best,

Djin
Posted 3/10/2020 8:03 PM (GMT 0)
Thank you all so much for the replies - much appreciated ! I was surprised that the Consultant was reluctant to remove his lymph nodes - I thought given his high PSA and the fact the PET Scan showed the possibility that it had breached the capsule that he would want to, but he said if it was him he wouldn’t want them removed as it would cause all sorts of problems and the scan said all was clear. I don’t know what it is like in the US but my experience with Consultants here is they are so very laid back (or appear to be) about everything which is why I feel I have to do my homework and get my head straight before the meeting ! I’m so glad I finally got brave and posted - i will let you know how it goes and hopefully get brave and mention the possibility of a genomics test .....which i’m off to google !!!
Posted 3/10/2020 8:33 PM (GMT 0)
Metastases to the lymph nodes is independent of whether the PCa is otherwise contained withing the capsule. There are tumors that are locally aggressive, but don't metastasize, and vice versa. Problems with poor lymph drainage can always occur, but are more frequent when a large number of nodes are removed.

If you want the Decipher test, your insurance should cover it for your husband's status, IMO. If not, I suggest calling the company and asking what your out-of-pocket fee would be. They are usually very accommodating.

Djin
Posted 3/10/2020 9:53 PM (GMT 0)
Hello CC and welcome,

Your husband's situation is not dissimilar to what I went through through, some things better, some worse. Just relax and wait to see what the 3 month (12 week) PSA results are to point you in a clear direction and let him heal up.

Adjuvant radiation (ART) means you just go ahead and do it as part of your treatment plan with no regard to PSA due to risk factors. Technically if he has a PSA at 3 months, > 0.10 ng/mL (depending on units on your PSA test, could be 10X the US values), he would be doing salvage radiation therapy (SRT).

I chose to do ART at 5 months with PSA < 0.10 due to G7->G9 from second opinion on pathology, low intermediate Decipher score, EPE, and small positive margin. A couple things I did:

1. Got second opinion on prostate pathology slides after surgery from Johns Hopkins to confirm grading.
2. Obtained Decipher RNA evaluation on prostate cancer sample from surgery as Djin noted.

Links that may help you:
http://pathology.jhu.edu/department/services/secondopinion.cfm
https://decipherbio.com/prostate/

Hope this helps a bit. A little more difficult from UK but nothing Federal Express can't solve.
Posted 3/11/2020 8:47 AM (GMT 0)
Thanks Djin and Mumbo! I’ve had no experience of going privately before so it’s a new concept to me - studying, asking questions, asking for a second opinion re pathology etc etc - in the UK we have our amazing NHS, which is sadly creaking at the seams and overwhelmed (my daughter is a nurse and her partner an Emergency Room practitioner so i’m always in awe at the long work hours etc) but when seeing Consultants through these normal channels with family in the past I’ve found it’s more a case of you go with what they say and don’t question it, of course that could just be my experience! I have found this forum so enlightening and encouraging - you all have such a wealth of knowledge and experience, which I know you’d rather not be in the position of having, but it’s so helpful to sit with a cup of tea and read!

Thank you again !
Posted 3/11/2020 9:48 AM (GMT 0)
A gentle reminder for all--CC is in the UK, so the typical practices that those of us in the US have available (second opinions from JH, calling our insurer to ask what is covered, co-pays, etc) are very different and not necessarily available to her.

For now, CC, your husband has to recover as well as possible from the surgery while the doctors formulate his secondary plan--given the pathology, unfortunately, more is likely in his future. The key for him for the next few weeks is to eat a healthy diet, get on his feet and walk as much as possible. Rest when he needs it. Learn how to control his bladder (that is all different now). Enjoy life in it's different ways now.

How is he doing? Does he have bladder control? Is he having erections (and have the two of you made use of them if he is)? Is is strength coming back?
Posted 3/11/2020 10:08 AM (GMT 0)
Thanks Halbert - I should perhaps have tried a UK based online forum but was drawn to this one as there is a lot more information in here - probably because under the NHS they will give you the gist of a histology report - not allow you to see it in full !!

He’s had the catheter out for a week and although he has some bladder control in so far as going to the bathroom then stopping when he wants to, so a degree of control, but almost constant leaking whenever he stands/sits/walks, coughs, laughs etc so i’m buying pads in bulk on amazon should there be a rush in supermarkets here 😁! He had nerve sparing 100% one side and 50% the other and has currently no errections which isn’t bothering him as he is so embarrassed and depressed about the leaking - even though he was told to expect this. Fortunately he has started back to work this week - from home thankfully so he doesn’t have to do the commute to the office: 20min car trip to the station, 60min train then either a 30min walk or a bus part of the way there! Hopefully in 4 weeks time when he’s due to actually go in things will have settled down a little!
Posted 3/11/2020 10:33 AM (GMT 0)
CC, It sounds like urinary continence is coming along. Urge incontinence clears up first; stress incontinence is the last type to go. Kegel exercises can only help. I saw daily progress for a few days, weekly progress for a few week, and finally monthly progress for a few months for the small amount of remaining stress incontinence, for which kegels helped.

Be very patient with the return of potency. Ask your doc about how to use any medications (generic Viagra or Cialis). They work well in some men for periodic erections. Whether daily use can help with healing and the initial return of the ability to achieve erections is unclear (there is little hard evidence -- excuse the pun). But like chicken soup, they don't hurt used as directed.

Djin
Posted 3/11/2020 11:27 AM (GMT 0)
Greetings and welcome. smile

He appears to have a similar pathology to mine so he should prepare for some challenges ahead. Procuring a penis pump and using it will keep the blood vessels and spongiform bodies healthy. This is good for using the member if desired, but more so for keeping the health of the organ intact. That prevents Peyronie's disease (the accumulation of internal scar tissue) which can lead to ossification (bone growth where it should not be). It also makes it easier to get it out the body cavity to pee, on a practical level.

7 years later I still have some stress incontinence and some cancer, despite having had the 'trifecta' of treatments. I also retain a very high quality of life and a superb relationship with my wife of 29 years. smile
Posted 3/11/2020 2:20 PM (GMT 0)

CurrantCottage said...
Hi

about 5 weeks ago my husband was diagnosed with prostate cancer, 55 yrs - PSA 84 in Oct 2019 then PSA 94 beginning of Feb and it has been a whirlwind time during which I’ve spent so much time googling and reading - the forum has proved both an encouragement and a source of wisdom for which i’m so thankful. We are meeting with the consultant this Saturday to go over my husbands histology report following his da Vinci robotic prostatectomy almost three weeks ago. His Gleason grade has remained at 4+3=7 but he has been upgraded to T3b from T2c. My husband doesn’t want to google and look up information as he is apt to panic so prefers me to and i’d value people’s thoughts ahead of our meeting with the consultant as regards the report - we are in the UK but blessed to have private health insurance through my husbands work - I dare say if we’d have used the NHS we wouldn’t have got to see the histology report which perhaps would have been a good thing as i’m going in circles studying information on lymphovascular invasion for starters. From my studying I would imagine that John will be offered adjuvant RT - he is hoping for a “it was a success - all clear” although I do keep reminding him his PSA check in 11 weeks time will be the deciding factor for the consultant also remind him that his Consultant has never used the words “all clear” rather “adequate cancer control” - I have lost several family members to cancer over the years and my Uncle died of PC at 69yrs whereas my husband has no experience of loved ones going through this disease. I’m so sorry for the rambling message it’s just i’m trying to remain positive and cheerful for my husband and children’s sake yet am secretly worried that this could have spread despite the radioactive choline PET scan prior to surgery being clear - the surgeon felt it best not to remove the lymph nodes nearby as clear in the scan !!!! Thank you so much !!!!!!!!

Ali

Adenocarcinoma present: Yes, acinar
Gleason score: 4 + 3 = 7
Tumour size and distribution: 47mm, widely involving the entire prostate
gland
Extraprostatic spread: Yes, focal, right anterior, right lateral and
left lateral (up to 8mm in width, 2mm in depth)
Bladder neck invasion: no
Seminal vesicle / vas invasion: yes, bilateral
Lymphovascular invasion: yes
Perineural invasion: yes
Apical margin involved: yes, bilateral
Base margin involved: yes
Circumferential margin involved: No
Urothelial neoplasia present: No
Pre-prostatic fat: Not involved
Lymph nodes: Not submitted
(Diagnosis):
Prostate, robot-assisted radical prostatectomy:
Acinar adenocarcinoma, Gleason score 4 + 3 = 7
Margins involved
Staging (TNM 8th ed.): pT3b pNx

Lymphovascular invasion means the pathologist saw cancer cells in blood vessels or lymph vessels or both. With pT3b the cure rate at 10 years less <22%. With a pre surgery PSA of >80 it is unlikely your husband will be undetectable after surgery or remain undetectable very long. Given his age, I would try to get into a definitive (cure) clinical trial.


https://consultqd.clevelandclinic.org/metacure-trial-can-we-cure-more-oligometastatic-prostate-cancer/

There is another at John Hopkins and Rosewell Park.

Post Edited (Duck2) : 3/11/2020 8:25:28 AM (GMT-6)

Posted 3/11/2020 11:05 PM (GMT 0)
Hal - CC indicated that they have private insurance which I assume is somewhat rare in U.K and much different the NHS. My comments reflected the possibility that their private insurance was more similar to ours and would have similar provisions to get a second opinion or genomic testing if requested by their doctor so worth asking about.
Posted 3/12/2020 9:18 AM (GMT 0)
Thanks Trail Guy - i’d not come across that disease before but had heard of the possibility of strictures - I appreciate the heads up re a pump and that its def worth getting to keep the member healthy. John and I have been married 29yrs too ...30yrs this June!

Duck2 - thanks for the information on lymphovascular invasion - I’d ploughed through several articles on it and googled on a UK site but everything I read was either way over my head or played it down saying it had no bearing on the outcome which surprised me.

Mumbo - private health care (wealthy people aside 😃) was rare over here but it’s becoming increasingly common for companies to offer health care membership with low monthly payments as an employment perk. That said we have been surprised on visiting various hospitals to see how many people are paying for operations and procedures privately to cut waiting times on the NHS. Johns prostatectomy took place in an American owned HCA hospital in London with his Bupa Insurance.
Posted 3/12/2020 10:57 AM (GMT 0)
Brenda and I will have been married for 30 years this June as well. Early congratulations to you and John. smile
Posted 3/12/2020 3:29 PM (GMT 0)
CC: Nobody here is a physician and nobody knows as much about your husband's case as his doctors do. Nothing here is medical advice. Instead, we can keep you and your husband company while you work your way through this and tell you what we think -- for what it's worth.
One mistake to avoid is to pay too much attention to statistics for a "cure" -- given your husband's pathology results a cure is possible -- but somewhat unlikely. But an incurable disease is not the same as a terminal disease -- the stats for "survival" are actually quite good and getting better all the time. It is quite unlikely that your husband's surgery has cured him -- too many risk indicators -- but there is a fair chance that further treatment -- with hormones and radiation -- will do the trick. That's not guaranteed either but it's worth reaching for if his doctors say it might help since managing the disease -- which can usually be done quite successfully for decades -- is an annoying process.
If I had to guess what will happen next it is this: Unless his PSA is undetectable at his next test they will probably want to do adjuvant radiation and, probably, androgen deprivation therapy at the same time. A short-to-medium round of ADT at the same time as the radiation seems to make the radiation work better, especially for men in the higher risk categories. They will probably wait around three months after his surgery to start to give him time to heal and to regain urinary continence. (Radiation slows the process of regaining continence so it's best to make as much progress as possible before RT.) Depending on the kind of radiation they use the treatments will take between two and seven weeks. The most common side effects of radiation are fatigue and hemorrhoid flareups. The 'rhoid thing is fairly common -- if he has a problem he shouldn't be embarrassed to mention it to the radiation doctor; he won't be the first. As for the fatigue, it's fairly mild and goes away a month or so after treatment. The important thing is to make sure you watch television shows with him so you can tell him how they end if he falls asleep.
Posted 3/13/2020 11:12 AM (GMT 0)
CC here are studies on Lymphovascular invasion.

The first links to an easy to understand diagram.

https://www.nature.com/articles/srep25419#Fig1

https://bmccancer.biomedcentral.com/articles/10.1186/s12885-017-3307-4

https://www.renalandurologynews.com/home/news/urology/prostate-cancer/lymphovascular-invasion-helps-predict-post-rp-biochemical-recurrence/


https://www.e-roj.org/m/journal/view.php?number=1418
Posted 3/13/2020 3:11 PM (GMT 0)
Thanks Peter - I find it easier to learn from non-medical people - you all explains your views in easy to understand language ! I had to laugh too with your comment about watching TV shows with him to explain the ending when he falls asleep - that is so true 😂

Thanks Duck2 for the links - i’m sat with a cuppa and will do some googling and reading 👍
Posted 3/14/2020 2:05 PM (GMT 0)
Hi All

Just back from the Consultant - he was very laid back and said that 90% of the prostate was cancer so it was the right decision for John to have had surgery and that there is still a very small chance that he will not need further treatment. We’ve an appointment to see him again in 9 weeks and if the PSA is 0.1 and lower all good, if higher he’ll refer him to an Oncologist for a pet scan, salvage radiotherapy. I got John to mention the negative aspects of the histology - seminal vesicle/perennial/lymphovascular invasion etc etc and he just said all aggressive Gleason 7 prostate cancer pathology shows these things and they are nothing to worry about ..... I decided not to ask any questions after that as he obviously wanted us to finish up so he could get home!!!!!
Posted 3/14/2020 2:50 PM (GMT 0)
CC, glad he and you are off to a good start and getting great information and advice here. I did not use surgery, but have a similar dx with high PSA, all cores positive and G7 the bad way (4+3). I used a combination of external beam and brachytherapy radiation accompanied by many months of ADT. That was more than nine years ago and I continue to have undetectable PSA and no evidence of the disease. We have other men on the board with as high and higher risk and advancement of the disease that are doing well. Glad to see you are staying positive.

In his risk and pathology situation using surgery, I would absolutely be expecting to need both external beam radiation and ADT due to the high risk diagnosis and surgical pathology. I would say the same had he merely used a mono-therapy approach with radiation, either EBRT or brachytherapy. We just know that when you get such a diagnosis, most always it takes some combination of therapies to control the disease. Plus, I would rather be prepared than surprised. While it is good for the oncologist to be calming, your sense of urgency regarding risk and potential additional treatment is very appropriate and indicates your concern.

Other than for you to learn and him to heal, you are in a waiting game to the upcoming PSA test. Since you know you are not going to be making treatment decisions for a little while, it is a great time to get outside and enjoy nature. Long walks are excellent for his healing. Also mentally and spiritually rejuvenating as you both have been through a lot.
Posted 3/22/2020 3:35 AM (GMT 0)

Hello Currant Cottage,

You have already experienced the support and camaraderie that our members show here, on a daily basis.

I'm sending my best to you and your husband, as he continues his recovery.

I was diagnosed in 2013, and my treatment history is shown below.

More than anything else, I want to share with you the sense of HOPE that stems from starting treatments. You're on your way.

I have an idea that you and your husband would find encouraging right now.

Go to the top of your screen on this website. Find the SEARCH icon. Type in this thread title, as follows:

LETTERS TO THE NEWLY DIAGNOSED

As soon as you see it, click on it ... and the letters will appear.

You might want to print them out, and let your husband begin reading them, one by one.

Our members here worked TOGETHER, putting together a series of letters, for our new comrades facing a new diagnosis.

I hope you will read and reflect upon the letters ... they contain first-hand experiences and reflections that you will find meaningful.

Let us know how you're faring ... and we invite you to read the LETTERS!

With my best, from across the miles,
Iowa State University CYCLONE
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