We need the truth

My husband (aged 67) was diagnosed with extensive G9 prostrate cancer at the beginning of May 2013. Two weeks later we were told that the cancer was localised (ish) and that we were offered extensive radio therapy or removal of the prostrate. We opted for the prostrate removal with the expectation that he would also need radio therapy and the prognosis appeared positive although I have to admit everyone cringed whenever the grade of cancer was mentioned.

The prostrate was removed at the beginning of June and my husband recovered well. We were slightly frustrated that we could not establish if the lymph nodes had been taken and if they were clear. My husband struggled and continues to struggle with the urine incontinence. He can now hold the urine whilst raising from the lying position to the toilet and he can even stop/start the flow, but from the sitting to the standing position he remains void of any control. (Note he has been back at work ( his own business) since 2 weeks post op.)



We saw the specialist four weeks later and he again could not advise if the lymph nodes were taken and/or clear. We were advised that they had been unable to gain clear margins, there was cancerous cells found in the surrounding prostrate fat . He considered my husbands psa levels post op of 0.96 to be positive and suggested that a course of radiotherapy would be required.

We expected to attend the cancer clinic to arrange the radiotherapy sessions required.

We saw the Oncologist yesterday and all our hopes were dashed by a very gloomy picture painted by the cancer team. They advised that his pelvic lymph node contained cancer and that as it is G9 we should expect it to spread albeit we haven't found it yet ( bones are clear). They advise his PSA was to high indicating cancer somewhere in his body although when I asked no-one could give me an acceptable PSA figure ( we were told it should be negligible ???.

They started talking about us refusing radiotherapy to maintain quality of life which shocked us both and we were both to stunned and scared to ask further because we are scared of the response. He has had a further PSA test yesterday and we gain the results tomorrow and depending upon the results if they will offer us radiotherapy ( if it has gone up we will only be offered hormone therapy)

Are they painting a black picture or are we in denial, we need some truth therapy ????

Hi Wilkins, sorry you have to be here but very glad you are here. I know nothing about radiation so sorry but I am of no help in that regard but I do know a bit about Prostate (not prostrate) cancer. The truth is gleason 9 is scary nasty aggressive stuff. That being said I want you take a deep breath. There is hope. At diagnosis I had a psa of over 3200. I had bone metastasis lung metastasis and lymph node meatastasis. That was seven years ago. Hormone therapy served me well for six years. I received provenge therapy 15 months ago and I start zytiga today. Its scary but its not the end. Have faith. There are many here who will help. Regards, Todd

Hello Wilkinslr,

Been there done that. We know its a frightening time for both of you. As you'll see from our stats we come out of surgery 2 years ago with positive lymph and even worse, a PSA of 6.9 6 weeks post-op! We've had local Rad Oncs telling us to radiate and other specialists telling us to keep the QoL and do the hormone therapy. It takes a while to realize there is a new normal.
Healing Well is a great group of guys and gals with a new normal. Please feel free to email or ask any questions you may have or just vent.
I think a second PSA may give you more info and from what i understand, Radiation would stall any progress with continence issues.
Others here will chime in with essential books to read (Dr. Patrick Walsh's Guide to Surviving Prostate Cancer is one) and learn more about the treatments and options that are available.
Buy some Pomi-t ! Our Dr. called last week to advise us to order it ( from UK) and start taking 2 tablets a day.

Marie and Jim

Hello Wilkinsrl,

Welcome to the forum. So sorry you need to be here but glad you found us.

I notice you do your dates day/month/year which prompts me to as where you are located. Sometimes we may know a nearby specialist that men can consult if we know, generally, where you are.

We have a number of members who have been where you are at and can tell you how to move forward. My story was a lot like your husband's except that my lymph nodes were negative and my PSA probably dropped faster. I say "probably" because I don't know what mine was at four weeks; the first PSA I had after surgery was at 7 weeks and that was still much earlier than a lot of doctors take it. It takes a while for the pre-op PSA to work its way out of the bloodstream and lots of doctors say you should wait three months to get an accurate reading. Still 0.96 sounds high (mine was 0.01 at 7 weeks) and that plus the positive node are not good news. On the other hand we do have some members who were node positive after surgery and are still treating the disease with curative intent. But it is long odds.

I can tell you that if your husband decides to go ahead with the radiation and his experience is like mine he won't find the experience too bad. Radiation does play hob with ones recovery of continence. They usually wait a few months to let a man recover as well as he can before starting the radiation. In the meanwhile they should be putting him on hormone therapy (have they talked about that yet?) It's fairly standard these days for high risk men to get hormones along with their radiation. I am doing two years of it (one more year to go).

If he decides not to do the radiation then they will treat him with the same exact hormones to contain his cancer so you don't need to make up your mind about radiation before you start the hormones.

Like I said, tell us what part of the world you are in and we will tell you the whiz-bang doctors in your area who might give you more options.

Sorry I can't address most of your concerns, but will say that the incontenence does get better.  Everyone is differnt.  Some are very luck and have no problems after surgery, others like your husband and myself have to "wait it out".  Had the DaVinci end of February, just now getting to the point where I'm only using a couple of pads during the day at work and less at night.  Don't know why, but every now and then I'll notice a gradual change for the better.  Hang in there, good bunch of folks on here that really, really helped my wife and myself through my surgery and ongoing recovery...

Perhaps some our members from the UK will speak up. Bit out of my area of "expertise". (In my case "expertise" tends to mean having some small part of a clue.)

Hi Wilkins and a very big welcome to you from another UK member. Sorry you had to find us but you will be glad that you did.

Now is the time to fully educate yourselves about all things PCa. Ask, ask and don’t be frightened to ask again!

I am assuming your husband is being treated via the NHS? Can I suggest, if you haven’t done so already, you reach out to Macmillan www.macmillan.org.uk Your husband should have been given access to them when he first received his diagnosis, if not you can find their contact details via their website. They have specialist teams who can help and advise you. Another great source of information is www.prostatecanceruk.org Download their ‘toolkit’ for a start (free).

This is by no means ‘the end’. With a G9 there will be further treatment on the horizon for your husband but being ‘stunned/scared to ask’ is most certainly not where you need to be right now. Read/ask and make sure you put yourselves in a fully informed position before deciding on the next treatment step.

You are entitled to feel scared but the more you learn about PCa and your husbands particular situation the better you will feel.

Sending you a big hug from sunny Brighton.

Susan
x

Wilkinsrl,

I'm not sure that the 0.2 threshold makes much difference for a Gleason 9 (5+4) with positive margins and a positive lymph node after surgery. The positive margin by itself is usually considered sufficient to trigger additional treatment after surgery. So, unless I am missing something your decision is between 1) radiation (plus hormones) to attempt to reach a more durable remission (docs don't like to use the word 'cure' for us G9 guys) and 2) hormones as palliative care to suppress and delay the cancer long term. The PSA retest in four weeks will give you additional information on which to base that decision, but on the other hand, if you do decide to go with radiation that extra month's delay in starting treatment won't have helped you any. It is true that radiation interferes with recovery of continence but, generally, they start the hormones several months before the radiation to sensitize the cancer to the radiation treatments and that period can be adjusted (within limits) to give the patient time to recover from surgery before the radiation starts.

The question to ask your doctor is why they are not starting the hormone therapy now since they will be doing that no matter what you decide. Hormones are a given at this point. It will affect future PSA readings (hopefully drastically) and you will lose some of the information you would have gotten by next month's PSA reading, but it isn't clear to me that that information will justify the delay.

Sorry to hear of your situation. I too am a Gleason 9, but through circumstances, caught it a little earlier.

I am entering my fifth year, had surgery, and 18 months later had Image Guided Radiation Therapy (IGRT). My current PSA is .02.

I have kept a close personal watch on my case, having PSA checks every 3 months, and once I saw my PSA increases go from <.01 to .06 over 18 months, I started radiation therapy.

As as been advised, educate yourselves. The Internet is marvelous for that. Keep good notes and a file of all test results. Don't be afraid to be pushy.

Took me 8 months to get continent. I used a Cunningham clamp for a while to help me make it through the day. Radiation has weakened me some, so I went back to wearing a pad just to eliminate accidents.

Life is good, I am happy, and enjoying every day. I am realistic that the Gleason 9 may get me some day, but so far, so good. There are so many new drugs on the market, that I believe that there is a good chance a cure will be found in the next 2 or 3 years.

Good luck to you. Please don't hesitate to e-mail me if I can help you in any way.

Goodlife

Hi Wilkinsrl,

One note of encouragement I'd like to offer is that they normally do not take the first PSA reading until 90 days after surgery -- because it takes a while for the residual PSA to filter out of the system.

So your husband is still a few weeks away from that 3 month benchmark. That is when the PSA readings will really count and that it will be even lower than last time.

Hang in there as you keep getting great advice from the others in this forum.

Take care,
Chuck

Resident of Highland, Indiana just outside of Chicago, IL.
July 2011 local PSA lab reading 6.41 (from 4.1 in 2009). Mayo Clinic PSA Sept. 2011 was 5.7.
Local urologist DRE revealed significant BPH, but no lumps.
PCa Dx Aug. 2011 at age of 61.
Biopsy revealed adenocarcinoma in 3 of 20 cores (one 5%, two 20%). T2C.
Gleason score 3+3=6.
CT of abdomen, bone scan both negative.
DaVinci prostatectomy 11/1/11 at Mayo Clinic (Rochester, MN), nerve sparing, age 62.
My surgeon was Dr. Matthew Tollefson, who I highly recommend.
Final pathology shows tumor confined to prostate.
5 lymph nodes, seminal vesicles, extraprostatic soft tissue all negative.
1.0 x 0.6 x 0.6 cm mass involving right posterior inferior,
right posterior apex & left mid posterior prostate.
Right posterior apex margin involved by tumor over a 0.2 cm length, doctor says this is insignificant.
Prostate 98.3 grams, tumor 2 grams. Prostate size 5.0 x 4.7 x 4.5 cm.
Abdominal drain removed the morning after surgery.
Catheter out in 7 days. No incontinence, occasional minor dripping.
Post-op exams 2/13/12, 9/10/12, PSA <0.1. PSA tests now annual.
Semi-firm erections now happening 14 months post-op & VERY slowly getting a bit stronger.