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hewhositsoncushions
Posts: 279
Joined: Mar 2017

Hi all.

Second biopsy results today.

Positive (4+3) classed as intermediate with standard sized gland and PSA of 4.

Consultant and counselling nurse very positive but still...

MRI on Sunday then discussions with surgeon and radiologist on strategy based om results.

I'm not sure whether I am in Denial, Bargaining or what at the moment. Apart from a little sniffle in the waiting room, I seem calm - detached?

Have told wife and have to decide how to tell son (17).

Seeing my therapist tomorrow.

Main goal is to figure out how to press on regardless and go down fighting.

My only concern is 4 + 3 is more aggresive than 3 + 4 but they did not seem worried. I've got a call in for them to ring back and clarify.

http://urology.jhu.edu/newsletter/prostate_cancer_discovery_96.php

 

Cheers all...

VascodaGama's picture
VascodaGama
Posts: 3041
Joined: Nov 2010

Cushions,

I am sorry for the positive finding. You are now a real member of this unwanted group but you can expect comradeship and receive advices that will help you along your journey. We all experienced that "detached" feeling when told about the cancer. This is a disease that affects the whole family. Be positive.

Since our exchanged discusses in your initial tread (https://csn.cancer.org/node/308573) you need now to consider filing all the info you are going to collect regarding the issue. The number and location of the positive cores in the last biopsy are important clues to judge the status of the cancer spread and advisable treatment option. I would recommend you to request a copy of the pathologist's report. Surely you can also get a second opinion on the pathologist's work requesting the slides to be analysed at a separate laboratory. Many here do it. I also repeated the exam doing two extra needles boring different areas (I was in denial and did not believe I had cancer) that confirmed the positive diagnosis and found the nerves not infested.

The next step is to get a clinical stage. The MRI will provide some data and the urologist will guess your cancer status. However, this image study should make use of a contrast agent (choline based) proper for detecting prostate cancer. Traditional MRI is linked to false negatives when cancer is small in size.

Treatments involve radicals (surgery or radiation) if cancer is contained (whole in the gland). Localized are dealt better with radiation. Combination therapies are also recommended, however the side effects are cumulative so that one must know the details before choosing. Urologists will recommend surgery (like the article of your link), and radiologists will recommend radiation. I would recommend you not to jump into something without knowing the consequences. You have time to educate and decide. Cancer does not spread overnight. Get the info and we will discuss alternatives.

Best wishes,

VGama 

hewhositsoncushions
Posts: 279
Joined: Mar 2017

Cheers Vasco! Do I get a badge? :)

With regards to the cores, as far as i can see, they don't differentiate apart from left and right. They put half the cores in one sample tub and half in another. No way to tell them apart within a bottle at the lab I assume.

I am comfy with the idea of a second opinion on the labs and will raise that.

As for an additional full biopsy, since my post biopsy bum won the award for the best impersonation of John Hurts death scene in Alien, I'd rather not :) That being said, I will ask about a smaller number of cores.

Nothing was mentioned about all the other diagnostic elements such as nerve infestation. I will also ask about those. Is there a list of them somewhere I can refer to?

I will also ask about an agent based MRI.

I think I wil be a pain in the arse for them in short order :)

Interesting you mention that others feel detached. I *can* feel my hindbrain running around in the background screaming "****! ****! I am going to die" *but* I seem to be able to ignore it and function.

One thing I am desparately trying not to do is think / ask is "how long have I got?" and "what are my chances?" simply because that is a stupid game to play. How do other people handle this?

Cheers

Cushions

PS - For the last time (I suspect) I am going to get (not too) drunk tonight and say goodbye to being a civilian :)

Will Doran
Posts: 207
Joined: Sep 2015

Cushions,

Sorry to hear about your results.  As VGama, we're here and will answer questions the best we can.  We are not doctors and thus can only share our situations.

I'm a 3 1/2+ year survivor.  Diagnosed in Aug 2013, with a PSA of 69 Gleason 7 and I had no symptoms of prostate cancer.  Robotic Surgery in December of 2013, followed by two years of Hormone Therapy (Lupron) and 8 weeks of Radiation as clean up to the prostate cavity area.  Now dealing with leg muscle weakness, side effects, from Prolia.  I'm on Prolia to try and repair the bone density damage done by the radiation.  It's a hard fight, and at times I've wondered if it's all worth it.  But so far we are keeping ahead of the "beast".  Support from my wife has been wonderful.  That is very important.

My advice to you is study and learn all you can about the disease and the treatments.  Make sure you know all the side effects of treatments and for heavens sake make sure you have doctors that will listen to your concerns and answer all your questions.  Fighting this "beast" is a complete change to your life.  There is no way I can say that easier.  But, hang in there and fight like hell.

Make sure and ask as many questions as you can, both with your doctors and here on this site.  We will answer as best we can.

Good luck

Love, Peace and God Bless

Will

hewhositsoncushions
Posts: 279
Joined: Mar 2017

Cheers Will

You sound like a trooper (as do many here!)

I'm trying to learn as much and have to deal with the NHS who may struggle to cope with people asking detailed technical questions.

I rang back and asked about my findings and the liaison nurse was a bit "this is how we do this" as she said (e.g.) 4 + 3 = 3 + 4 and the MRI will show the detail. She said that if there was anything else untoward in the results I would have been told. I'll grill them when I get the MRI results. They do standard MRI not injected ones (she said they work differently to the US).

Am going to have to be patient with them.

The hardest thing was just telling my son (he is an absolute trooper but I know it hit him).

My goal is to (excuse my French) ******* own this both for their sakes and mine.

Cushions

Clevelandguy
Posts: 470
Joined: Jun 2015

Hi,

Hope the MRI results tell you the cancer is deep inside of the Prostate where a 4+3 & and 3+4 would not matter as much.  Don't want the cancer getting outside of the gland which will cause problems.  Good luck, keep us informed to see if we can help.

Dave 3+4

hewhositsoncushions
Posts: 279
Joined: Mar 2017

Cheers Dave

So do I! :)

The could have hinted at that from the results I suspect but we shall see.

Will keep you all posted.

Cushions

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3323
Joined: May 2012

hewho,

A Gleason of 7 is not of course the mildest-possible (6), but neither is it highly aggressive.  If all scans suggest that it is all still inside the capsule, either of the two curative options for PCa, which are surgical removal or Radiation Therapy, are sound choices for you.  (Hormonal Therapy [HT] and Chemo are pallative treatments that extend life and reduce symptoms, but are never curative for PCa.)

Choosing which should take time, spend at least weeks reading and pondering. There is no hurry.   Many guys here will share their opinions in great detail, a great tool for you to use.  But take your time and go with what intuitively or in your gut you think you would best be able to live with.   Sometimes the rapport a man has with the radiation doctor or the surgeon is a deciding factor, who you most trust. I decided on DaVinci removal, and have been well-pleased. But I am not an "advocate" of surgery, for or against.  A few guys are in some sense admitted "advocates"  for one treatment or another, but they and everyone else simply want you to be well-infomed going in. You will benefit from every post you read here.

What to tell your 17 year-old son ?   Tell him you have a very mild and readily treated form of cancer that in most cases, when it is at your stage, is comparatively easy to treat and cure (compared to most other organ cancers that people contract).   Even men with aggressive PCa disease that is metastatic usually live a long, long time.  But none of your results suggest that you are anywhere near that sort of advanced disease.  Assume for now that what you have is absolutely not life threatening as it now stands,

max

Swingshiftworker
Posts: 1013
Joined: Mar 2010

Sorry to hear about your diagnosis but you needn't be depressed, your chances are survival and longevity are stil very good. 

Don't know if you've seen it already but my sticky on the available options still should be useful to you.  I believe that my recommendation for the use of CyberKnife would be particuarly germaine to your sitatuion.  Please consider it as a 1st option.

 

The following is a duplicate of one that I have posted in various threads on this forum to give men newly diagnosed w/lower risk prostate cancer (Gleason 6 or 7) an overview of the treatment options available to them.

Anyone newly diagnosed with prostate cancer rated Gleason 6 (and usually Gleason 7) has all treatment options available to him and, since this cancer is considered "low risk", he has time to decide which choice is best for him.  So, the first thing a new prostate cancer patient should do is to do research on the available options before he actually has to make the decision regarding which treatment to choose.

The following is my response to other men who asked for similiar advice about the treatment choices avilable to them.  It's a summary of the available treatment options and my personal opinion on the matter.   You can, of course, ignore my opinion about which treatment choice I think is best.  The overview of the choices is still otherwise valid.

 . . .  People here know me as an outspoken advocate for CK and against surgery of any kind.  I was treated w/CK 6 years ago (Gleason 6 and PSA less than 10).  You can troll the forum for my many comments on this point.  Here are the highlights of the treatment options that you need to consider:

1)  CK (SBRT) currently is the most precise method of delivering radiation externally to treat prostate cancer.  Accuracy at the sub-mm level  in 360 degrees and can also account for organ/body movement on the fly during treatment.  Nothing is better.  Accuracy minimizes the risk of collateral tissue damage to almost nil, which means almost no risk of ED, incontinence and bleeding.  Treatment is given in 3-4 doses w/in a week time w/no need to take off time from work or other activities.

 2) IMRT is the most common form of external radiation now used.  Available everythere.  Much better accuracy than before but no where near as good as CK.  So, it comes with a slightly higher risk of collateral tissue damage resulting in ED, incontienence and bleeding.  Unless things have changed, IMRT treatment generally requires 40 treatments -- 5 days a week for 8 weeks -- to be completed.  I think some treatment protocols have been reduce to only 20 but I'm not sure.  Still much longer and more disruptive to your life than CK but, if CK is not available, you may have no other choice.

 3) BT (brachytherapy).  There are 2 types: high dose rate (HDR) and low dose rate (LDR).  HDR involves the temporary placement of rradioactive seeds in the prostate.  CK was modeled on HDR BT.  LDR involves the permanent placement of radioactive seens in the prostate.  1/2 life of the seeds in 1 year during which time you should not be in close contact w/pregnant women, infants and young children.  The seeds can set off metal/radiation detectors and you need to carry an ID card which explains why you've got all of the metal in your body and why you're radioactive.  Between HDR and LDR, HDR is the better choice because with LDR, the seeds can move or be expelled from the body.  Movement of the seeds can cause side effects due to excess radiation moving to where it shouldn't be causing collateral tissue damage -- ED, incontinence, bleeding, etc.   Both HDR and LDR require a precise plan for the placement of the seeds which is done manually.  If the seeds are placed improperly or move, it will reduce the effectiveness of the treatment and can cause collateral tissue damage and side effects.  An overnight stay in the hospital is required for both.  A catheter is inserted in your urethra so that you can pee.  You have to go back to have it removed and they won't let you go until you can pee on your own after it's removed.

 4) Surgery -- robotic or open.   Surgery provides the same potential for cure as radiation (CK, IMRT or BT) but which MUCH GREATER risks of side effects than any method of radiation.  Temporary ED and incontinence are common for anywhere from 3-12 months BUT also sometimes permanently, which would require the implantation of an AUS (artificial urinary sphincter) to control urination and a penile implant to simulate an erection to permit penetration (but would not restore ejaculative function).  Removal of the prostate by surgery will also cause a retraction of the penile shaft about 1-2" into the body  due to the remove of the prostate which sits between the interior end of the penis and the bladder.  Doctors almost NEVER tell prospective PCa surgical patients about this.  A urologist actually had the to nerve to tell me it didn't even happen when I asked about it.   Don't trust any urologist/surgeon who tells you otherwise.  Between open and robotic, open is much better in terms of avoiding unintended tissue cutting/damage and detection of the spread of the cancer.  Robotic requires much more skill and training to perform well; the more procedures a doctor has done the better but unintended injuries can still occur and cancer can be missed because the doctor has to look thru a camera to perform the surgery which obstructs his/her field of vision.

 4) You may also want to consder active surveillance (AS), which is considered a form of treatment without actually treating the cancer.  You just have to get regular PSA testing (usually quarterly) and biopsies (every 1-2 years, I believe) and keep an eye out for any acceleration in the growth of the cancer.  Hopeful and Optimistic (who has already posted above) has already mentioned this and is your best source of info on this forum about it. 

I personally could not live w/the need to constantly monitor the cancer in my body.  Like most other men, I just wanted it delt with.  Some men gravitate to surgery for this reason, thinking that the only way to be rid of it is to cut it out, but I did not like the risks presents by surgery and opted for CK, which is a choice I have NEVER regretted.  I am cancer free, there is no indication of remission, there were no side effects and my quality of life was never adversely affected.  Other men on this forum have reported similiar results.

 So, for obvious reasons, I highly recommend that you consider CK as your choice of treatment.  The choice seems obvious when you consider the alternatives but you'll have to decide that for yourself.

 Good luck!

 

hewhositsoncushions
Posts: 279
Joined: Mar 2017

Thanks for the good words.

The hardest thing that I did today was tell my son. I wish I could express how proud I am at how he took it. I pretty much did what Max suggested - "it's cancer yes but its not the end of the world and I will fight like hell for all of us". I know it bothers him more that he shows but he is a trooper. I've been grumpy with him the last week or so waiting for this and apologised to him. In some ways it has brought us more together.

As for treatment options, so far all I have had presented is RP (method TBC) and radiology (again method TBC). I mentioned CK at the last consult and got told "we don't do that" but one of the hospitals down the road does. Some digging needed.

Hilariously, I got fobbed off on the penile length reduction too. I'm saving that up for when I get grumpy with them :)

I only just found out today that there were two modes for surgery (open / laparoscopic). The only thing that stood out to me was that open may have more bleeding.

I'm processing all this at the moment (not doing too much Google:)) and feel like the big challenge is not the disease but dealing with the NHS to get the best strategy. I dont mean that in a critical way just that "they have their ways" sprinkled with a little "we know best". I'm certainly not going to rush in I can tell you.

I'm between contracts at the moment so in some ways this is good timing but at some time will have to face this whilst getting employed. Any good ideas on coping with the stress?

I guess the motto for us all is "in it together!"

Cushions

Will Doran
Posts: 207
Joined: Sep 2015

Hewho / Cushions,

Exactly.  We (Here on this site) and all of our families are "All in this together".  The support of family and doctors and other medical staff is very important. 

 I take it you're not from the US.  You said that the MRI's weren't done with injections.  However I do know that many times you have much newer treatment options than we have here. My doctors had talked abotu that many times. It so political at times and who makes money from which drug company that it causes testing and use of new treatments to be delayed for long periods of time.  So, you do have that in your favor.

Make sure a live every day and enjoy simple things, like walks in the woods, at the beach, or whereever, and things like rain storms, thunder and lightning, snow falls, the wild life in your yard, etc.  Oh yes, and sunshine.  Go for drives in the country with you signifigant other.  The best thing I did was get a new American Muscle Car (Dodge Challenger RT Classic with Hemi V8), and all the bells and whistles.  Getting that Challenger out, putting it in Track / Sport Mode with the transmission in manual sport mode and the stability and traction control turned off, and the power steering set on firm / sport setting, and drive it like I stole it, is my best therapy.  I take it out in the country back roads and love to muscle that beast around and have a great time.  Even my wife gets a grin on her face.  She suggested me getting that car and I'm sure glad I did. 

Like I said, enjoy every day.

Love, Peace and God Bless

Will

FinishingGrace
Posts: 83
Joined: Apr 2017

I can't offer any knowledge or recommendations but I am sorry for the results you received today. No doubt many here will help you get through it.

VascodaGama's picture
VascodaGama
Posts: 3041
Joined: Nov 2010

Cushions,

We got two similar incidents with this bandit issue. I was 50 years old at the time of diagnosis and caught with no experience on medical affairs. Did not know what was happening, how to handle the situation and to whom to reach. It was a new world that was real but unrealistic in my mind. Was I in the path of dead? This all happened 17 years ago.

If you reread our exchanged posts in your previous thread, you do understand my comments regarding your need for being confrontational when dealing with NHS people. You need to be strong but handle the affairs with diplomacy. Strong means to know the basics about the cancer, its diagnosis and therapy so that when in consultation they will understand that cannot blindfold you on the matter. You do not need to become a professor, just know some facts and how to inquire to get the answers.

In fact, according to NHS standards you are entitled of copies of the exams, tests and analysis done under the NHS umbrella, however, you cannot have the last word above the decision of the NHS specialist (the urologist) taking care of your situation. In any case, you can request referrals to meet another specialist for a second opinion. This could be another urologist or a radiologist. Sincerely, insist for a copy of the biopsy pathologist report. This is the most important data in the present and for the future in case you experience recurrence.

I know of people that did PET exam with the proper contrast agent for prostate cancer and got CK treatment covered by the UK NHS system. In particular the PET scan is widely available across England, with a number of them using the PSMA contrast. They managed to do that because they were confrontational. You can inquire with your GP on the best way to follow but you can also do some research by yourself contacting the instituitions involved in the matters.

For instance CK exist at the Queen Elizabeth Hospital Birmingham under the NHS. In Birmingham there is also a clinic doing the PSMA PET exams at request of QEH under the NHS, but there are many others probably close to where you live. Here are the links for you to explore;

https://www.uhb.nhs.uk/cyberknife

http://www.birminghamprostateclinic.co.uk/prostate/assessments/pet-scans-for-prostate-cancer/

http://www.nhs.uk/Conditions/PET-scan/Pages/Introduction.aspx

Something I learn in the national health system is that the GP exists to stop people (the tax payers) from flooding the hospitals. The second buffer is the specialist that stops people from access to the best treatment, only available at certain places. Only a fewer (the friends of friends) manage to get the upmost health care. Otherwise one must do it privately.

Surely all this reinforces the need to get the best out of what is available at one's disposal, and that requires to have the best image study for the best guess of the location of the bandit. If contained the treatment can assure cure to 100%. If localized the situation requires a wider therapy, therefore lower assurances but being radiation most recommendable.

Your comment on surgery (robot assisted/laparoscopic vz open) differs in the time of the operation and recuperation period. Open requires longer times (the cut is wider) but the physician has better access for dissecting localized lymph nodes (the first auberge used by the bandit in its travel). LP allows patients to go home in just two days (better for the NHS) but recovery seems better done at the hospital for pain control and abdominal healing. Radiation differs on the protocol and used equipment. CK takes 5 sections while IMRT takes 40. Both do not need hospital internment, so that CK can be done far from home (a trip of 5 days out) while IMRT should be at close facilities as it is done 30 minutes every day (except on Sundays).

Try reading about the risks and side effects involving each therapy to help in the decisions. Discuss the matter with your wife as you may not be able of fathering another child. The lovely nights will become different too, and you will need to adapt to your newer you.

Best wishes and luck in your journey.

VGama

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3323
Joined: May 2012

hewho,

Teachers will tell anyone that the worst age for kids to handle emotional stresses is middle school. You son is a little past that, and may do a bit better than a middle schooler would. But you are correct:  He may become more distraught than what he initially seems. Yet it sounds like you handled it superbly.   I recommend that parents give a kid around his age a "project" -- something to do around the house as his chore, to "help out."  It can make them feel less helpless and a bit more in control.  And when you decide on a treatment, give the family details of what is involved; it can be an educational moment for them all.

To expand a tad on what vasco wrote above: Open incision surgery may bleed a bit more than robotic, but neither is an issue. Any bleeding you did when awakened will be unknown to you, and not affect much of anything.  RP surgery is not dangerous in the US:  Around 1 in 1,000 men is "lost" on the table, but this is almost always cardiac-related, not from a surgical error. Most places screen whom they will operate on carefully.  Either form will HURT when you awaken. I went hme the next morning, but both techniques require that a man wear a cath for 5 days to a week or so.  And lifting/movement will be limited for a few weeks, until the pain passes and healing is well along.

If you do not have CK (SBRT Radiation) nearby, ensure that the facility has at least IGRT, which is as effective as CK. The difference is how often one must travel to get treatments. With the latest guidance technologies added to IGRT, its precision is similiar to CK.  As Vasco said, fractionated radiation (IMRT,IGRT) requires about 40 trips to the clinic, CK about 5 trips.  With either you can continue working and a normal routine even during treatments.

I recommend you buy the following book, available via Amazon or any Barnes and Noble bookstore (a regual-stock item for them):   Dr. Peter Scardino's Prostate Book It reviews the gland, all forms of prostate disease, diagnosis, and all forms of treatment options, with sections for and against each. 

Surgery (both forms), Radiation (Fractionated ["IGRT"], SBRT ["CK"], Seeding).  Proton Therapy, Active Survellance, "Freeezing".  Dr Scardino explains each. And then, follow-up after treatment: PSA levels after surgery and Radiation, how to interpret both.  Clinical definitions of what constitutes "relapse," and what to do when.  And also Hormonal Therapy and Chemo for men who were metastatic.

Dr. Scardino is Chief of Surgery, Sloan-Kettering Cancer Center, New York City.

max

hewhositsoncushions
Posts: 279
Joined: Mar 2017

@Will

I know there are big differences between the US and UK - I just need to beaar that in mind when I talk to them My main relief is that I do not need to pay for this!

I do intend to make life count in the interim. Each day is a win. I did suggest coke and hookers to my wife as palliative care but she just punched me Cool

@Grace

Thanks for the kind words.

@Vasco

My current job is to read up on the various options and start a dialogue with the hospital once I get the MRI results. I don't think they are deliberately obstructive because I have heard some of the porters grumble about cuts which confirms my already held suspicion that like you said NHS care is effectively rationed. I just have to fight for my share without getting into a confrontational situation.

@Max

I agree that I need to put something in place to care for my family. I've been talking to a friend about that today and will try and do more stuff with him as well as getting him busy. I owe it to me and them not to take the easy route and join the pity party.

Interestingly, I'm examining my own feelings about the type of treatment and (probably says something Freudian about my psyche Wink) realised that as a lifelong Ridley Scott / Alien / Aliens (the others don't count) my gut reaction is "CUT IT OUT" / "NUKE IT FROM ORBIT". I need to get more informed before I jump.

Cheers all

Cushions

hewhositsoncushions
Posts: 279
Joined: Mar 2017

So I had my MRI on Sunday - that was quite interesting. In and out in half an hour, slightly deafened by the clicks and buzzes. Not the sick bay of the Enterprise but not far off! Resuts review a week on Wednesday.

Anxiety kicked in bad over the last week with involuntary panic attacks (they suck soooooooooooooooooooooo badly) so saw the GP who was kind. Got some happy pills to cut the effects. Shame I can't have a G&T with them :)

VascodaGama's picture
VascodaGama
Posts: 3041
Joined: Nov 2010

Well ........ you can have it with me. G&T is my second drink after red wine, but I don't mind to share a bitter too if that is your choice.

I wonder about the anxiety affair. What was it? Can you explain what took you to such panic attacks?

Having cancer is not fun but it is not death too. This is a situation we need to confront positively. The worse are the side effects that will be there forever. Avoiding these to the maximum and reaching cure is the goal that one should aim. Too much information also causes anxiety, and the responsible feel in the decision of the therapy (without experience) takes us to the tip of the worries. Probably a trip with the family will give you peace of mind and the opportunity to think it over on what to do next. Remenber that your choice is the best no matter what you opt for. We weight for you.

Best wishes for a good picture of the bandit. In all my 17 years of exams I never got a successful image of his face. A positive result is what you need to locate the thing and confirm the clinical stage.

VGama

 

hewhositsoncushions
Posts: 279
Joined: Mar 2017

Hi Vasco

I've suffered with anxiety for most of my life. Stressful situations draw out PAs like wasps to honey. I thought I was cracking this but between being stuck between contracts (not broke but wifey still worries and I feel guilty) and having this ******* thing, I think it crept up on me because I was trying too hard to be Iron Man for the last three or four months.

I said to my GP "I have a logical part that is ok with this an a primal part that is scared". He said "No, you have a front of bravado and are just plain scared but that is OK. You are being way to hard on yourself about it too." He got it bang to rights.

Not just PAs but chronic hyperventilation syndrome (persistent shallow breathing that screws up your bloods like a PA but more low level and long term. Also sleep apnoea.

I have an appointment with the lung bods for sleep apnoea and will raise the CHVS with them too.

Am working the solutions but as my GP said - I need to be patient.

As you can see from my other posts, I do over analyse the results but again as my GP said "It doesn't matter how much you read around it, a G7 is still an G7."

I do have a break coming up after the results review so will go from there.

At least I am getting sniffs of jobs now which is also good. Just need to make sure having this doesn't prejudice my getting employment.

Cheers for the good words :)

C

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