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Can a month make a difference?

Ellesmere
Posts: 6
Joined: May 2016

I'm newly diagnosed with Gleason 4+5=9, adenocarcinoma in 14 out of 19 cores, extraprostatic extension present, ISUP Grade 5.

I was advised that the cancer is contained within the prostate, and have been scheduled for radical prostatectomy in July, but that 'extraprostatic extension' has got me worried. 

I've been going along realsing that everything that could be done was happening speedily, but now I'm lying awake worrying that this could spread out of the prostate before July - and wondering if I should push for earlier surgery.

It might seem nuts, but could a matter of maybe three weeks or so make all the difference here? Should I try hard to get scheduled for June instead of July?

My biopsy was in early April. I've since had (PETPSMA)-PET CT Whole Body PSMA.

My surgeon is great to talk to, but I can't trouble him on the telephone and I feel that I'm beginning to obsess about this.

Thank goodness I've found this board! 

I'll be very grateful for advice from anyone more knowledgable than me about this!

bob33462
Posts: 78
Joined: Feb 2016

Ellesmere -

Sorry you have been diagnosed.

Before you make a final decision please explore all your options. People on this board with more experienced will be able to help you more than I can.

I was a Gleason 8 downfgraded to a Gleason 7 (4+3) with a second opinion.

I would have gone with radiation  except I had a voiding problem that radiation would have made a lot worse. I opted for surgery (RALP) and had it on 4/20/16. Waiting on post op pathology report -

Take some time and condider talking to a radiology oncologist, reading all you can on the disease, and a second opinion on the biopsy slides.

Bob

 

 

 

 

 

Ellesmere
Posts: 6
Joined: May 2016

Many thanks Bob! It's great to get such a quick response after I've really had no-one to talk to till now!

I've accepted the surgeon's advice that removal of the prostate is necessary - I'm just worrying all the time about whether bringing the operation forward a few weeks could really make any significant difference to the cancer's possible spread outside the prostate.

I guess I don't want to make an unnecessary fuss based on my ignorance, but at the same time I don't want to wait till July if it is likely to make a difference.

 

 

Old Salt
Posts: 720
Joined: Aug 2014

Consider all the options available for a serious case like yours. Bob33642 already stated this and I agree.

Don't worry about the time factor, a month won't make a difference (there are studies to back up this statement).

It would be nice to have more info, Apparently you had a scan using ('state of the art') PSMA methodology.  Where was this done (in Germany?) and what did the report state?

Ellesmere
Posts: 6
Joined: May 2016

Thanks Old Salt! 

The time factor of that month has been the biggest thing on my mind. I haven't felt totally bad about having the prostatectomy, just unclear about whether sooner might be very significantly better given the apparent aggression of the cancer. I appreciate your reassurance there.

I had the PSMA here in Australia. I haven't seen the report, but the surgeon rang me a few days later and said it was good news and the cancer did not appear to have spread beyond the prostate.

However, I since noted that the earlier biopsy report ended with Perineural invasion present, Extraprostatic extension present, ISUP Grade 5. This is what has worried me that the news might not be so good - but then again he did call me about the PSMA (which was two weeks after the biopsy) to say it was good!

It shows how little I really understand - but this Network is great for getting things off my chest...

If anyone can correct any of my misunderstandings - please do!!

Thanks!

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3274
Joined: May 2012

Ellesmere,

With a Gleason of 9 and the volume of tumor involvement, I would assume that the disease had left the gland, not that it is contained. In such cases, IMRT (a radiation modality) is the preferred way to begin, not surgery.  As others have stated, I would consult with a radiation oncologist with significant experience against prostate cancer before making a final decision.  Being a bit obsessed is common and not unreasonable in these circummstances. Just do not become frantic; review options with more than one expert.  PCa usually moves slowly, although your Gleason is higher than the average new case.  You have options, and need to research them.

max

VascodaGama's picture
VascodaGama
Posts: 2987
Joined: Nov 2010

Ellesmere,

I am sorry for your diagnosis. The survivors above gave you excellent advice. I also think that one month wouldn’t alter the outcome result. I would use this “extra-time” in researching about pre op preparations and post op care. You also should consider on the possibility/need of adjuvant treatment because of your pathological findings.
By the info you shared, in particular the high risk Gleason pattern (ISUP Grade 5) and score (4+5;9) and the positive extra capsular extensions (EPE), it sets the option for surgery more as an intent for debulking. Adjuvant radiation (RT) may become necessary, which treatment you could also add in your investigations while waiting. Many similar Gs9 cases have included RT in the total protocol even if one opts in doing it as a sequential (at recurrence timing).
I wonder on the items described in the biopsy report and details of the PET image study. Have you obtained second opinions on these data?
How old are you?
Do you have any other illness?
How about symptoms?

Regarding the side effects; one may expect them to be different depending on the type of the surgery. Robotic cases have more chances for incontinence. It also prohibits dissecting lymph nodes at the iliac, which in a case of positive extra capsular extensions, it becomes essential to judge better the real status of the patient (post op clinical stage).
Positive lymph nodes (pelvic nearer to the prostate or at the iliac) would lead the patient to earlier intervention with chemo or hormonal therapy. In any case, your doctor’s comment “…the cancer did not appear to have spread beyond the prostate…” because of the negative PSMA PET scan, leads us to think that cancer is localized but not contained. The positive EPE could refer to extensions out of the inner capsule tissue but localized at the false external capsule tissue. This could also justify the “Perineural invasion present” finding. Those may have been identified by the PET and judged by the doctor as contained.

PSMA PET is the modern and best way at present times to diagnose metastases, and far away better than the traditional CT or MRI or C11, that are subjected to the size of the tumor. However, this newer technique is also subjected to limits in machine’s SUV. The good thing is that it did not identify far metastases (in bone, lymph nodes or other organs) classifying your stage M0.

Cancer treatments got risks and side effects one cannot avoid. The facilities (hospital, clinic, etc) and expertise of the physicians become important aspects to consider where and who is going to operate on us. I hope you have chosen the best. (How many cases handled by your surgeon in one year)

Best wishes and luck in your journey.

Please note that we are not doctors. We base our comments on own experiences and acquainted information along our journeys.

Welcome to the board.

VGama

 

Ellesmere
Posts: 6
Joined: May 2016

Very many thanks to max and VGama, as well as the other respondents. It has made a big diffference for me to be able to ask the real questions that are in my mind, and to receive honest feedback from people who have experience and are pleased to help me to find my way through this. Thank you!

Already you have helped me to shift my focus away from what had become the only thought in my head, that it might be seriously detrimental or even dangerous to wait until July for a prostatectomy. I feel much calmer than I did 24 hours ago, and look forward to a better night's sleep tonight.

You have also given me some good straightforward questions that I can raise with my surgeon without feeling that I'm making a fuss about nothing - and I'll do that at our next meeting.

To answer VGama's questions:

Have you obtained second opinions on these data? -  No, I live in a country situation and do not have a range of accessible specialists to choose from. Through the web, I am aware that my specialist in the nearest city has a good reputation and has not only long experience with the DaVinci Robot, but also trains other surgeons on it. His openness to discussion and his general demeanour and willingness to explore options engenders confidence. I feel very comfortable with him.

How old are you? - I am 73, fit, strong, healthy and active, eat sensibly, non-smoker and have no weight problems. I have never felt any age as long as I can remember. It's only the mirror that tells me I must be oldish!

Do you have any other illness? - No illnesses at all, ever! (Very lucky till this one!)

How about symptoms? - No symptoms that I recognised. I took a blood test about six weeks ago because I had been yawning a lot every day, and that threw up a B12 deficiency - which is being investigated. It also reported a psa of 23 which sent me straight to the urologist. 

So, it's all come very much out of the blue, which I guess is often the case.  So far, my only awareness of this disease is in my brain, and I'm very keen to fix it if we can, and get on with my life. 

Thanks again!

 

hopeful and opt...
Posts: 2224
Joined: Apr 2009

I am sorry for your diagnosis

As others have posted it is highly likely that the cancer has escaped your prostate. Your diagnosis of aggressive and extensive Cancer and a high PSA indicate this.

There can be major side effects from each treatment modality that are cumulative. If you have surgery you can suffer severe side effects and still need to undergo hormone and radiation treatment for cure

You can obtain cure for cancer by having hormone and radiation treatment only and not have to have to undergo surgery that can have major side effects to include but not limited to incontinance and erectile dysfunction.

I strongly recommend that you consult with a radiation oncologist and a medical oncologist.

The medical oncologist is very important and your case and I suggest that you find the very very best

 

 

 

Ellesmere
Posts: 6
Joined: May 2016

I appreciate all this advice, and note that several posters are urging me not to rush into surgery.

The sequence, at approximately two-week intervals has been, initial consultion and examination, MRI, Biopsy, PSMA. 

Because I'd had the PSMA a month after the MRI, I didn't relate the MRI results here. I'd assumed that the PSMA data had superceded it .

However, I've just read through the MRI report, which reads in part:

"There is a nodule in the peripheral zone mid gland just left of centre measuring 13 x 11mm in the axial plane. This lesion exhibits marked restricted diffusion with AC values as low as 660. The remainder of the peripheral zone exhibits linear hypointensities on T2. No other focal lesion seen in the peripheral zone.

The prostatic margin is intact. The seminal vesicles are slightly underdistended however no evidence of infiltration into the seminal vesicles or extraprostatic spread. Bladder wall is slightly thickened and trabeculated in keeping with an elemnt of bladder outlet obstruction.

There are multiple small reactive appearing inguinal lymph nodes present. No perirectal lymph nodes identified. No periprosthetic lymph nodes seen.

ASSESSMENT

1 There is a low signal T@ signal lesion in the peripheral zone left of centre, midgland which is highly suspicious for neoplasia, PI-RADS 5.

2 Mild central gland hyperplasia with no T2 concerning lesions.

3 No suspicious lymph nodes or suggestion of bony infiltration, however bone scan is suggested to assess the bones further."

Could this shed any further light on why a prostatectomy has been suggested as the next step?

Thanks again

Old Salt
Posts: 720
Joined: Aug 2014

We may not always agree on this forum, but one thing we agree on, generally speaking, is the statement that urologists specialize in surgery. Australia may be different, but in the USA most urologists are not (very) knowledgeable about radiation therapies for prostate cancer. Or they may not be up-to-date, because the field has changed significantly over the last decade.

Radiation oncology really is different and one needs to talk with a specialist in that field to see if he/she can provide another approach to your case. Then you decide, after reviewing as much as you can handle. Easier said than done!

PS: We are just amateurs, with non-medical educations!

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3274
Joined: May 2012

I agree with all Old Salt mentioned. While knowing this is a little redundant with the piece I wrote above, every man with PCa owes it to himself to speak with a good radiation oncologist before making his treatment decision.

While not understanding some of the terminology in your report, it seems that radiation has probably as good a liklihood of curative outcome as does surgery at this point.  If there was a more widespread suspicion of spreading, the choice would move significantly toward radiation as the preferred choice.

max

hopeful and opt...
Posts: 2224
Joined: Apr 2009

When initially treated with radiation especially SBRT aka as Cyberknife, Novalis, etc. the radiation oncologist has the ability to extend the perimeter of treatment beyond the prostate. This is routinely done for men with more aggressive cases. 

In your case the radiologist was uncertain of whether the cancer has escaped your prostate that's why he recommendated a bone scan.

The MRI does not pick up microscopic cancers, so there may still be cancer outside the prostate, which in your case likely.

Will Doran
Posts: 207
Joined: Sep 2015

Ellesmere,

As has been suggested, explore all methods of treatment.  It is normal to want fast action.  It took about four months from diagonsis to surgery for me.  I was about "nuts" during all those appointments and waiting.  I was 67 when diagnosed.

Before I made the decision to have Robotic Assisted Surgery, My Urologist / Surgeon insisted that I talk to Radiation Oncology about their treatments.  Then I thought I wanted to do the Radiation Treatments (seeds, etc.).  But after more study, I decided that I wanted the cancer GONE.  I elected the Robotic Surgery. I was diagnosed with a PSA of 69, Gleason of 7 (3+4).  Had Surgery in Dec. 2013.  PSA dropped in two months to <0.010, and has remained there ever since.  I was a Stage pT 3b N1.  One lymph node was involved with a spot that was so small it didn't show up on my MRI's.  My doctors decided to treat me as if I were an advanced Stage 4.  I was put on Lupron for two years, and had 8 weeks, 5 days per week, of radiation.  I finished my Hormone treatments 4 months ago.  I've been off the Lupron for 4 months.  I just had new blood work done, and all my results came back in the middle of all acceptable ranges for the tests, and my PSA still remains at <0.010 (as of Monday -5/2/16-of this week).  I have an appointment with my Urologist next Monday and will be anxious to see his reaction.  Could be a time for a "Big Bro Hug" with my doctor.  My doctors have been using the word Remission from time to time.  We are never cured.  This beast will always be with us.  However I feel like I will hear the word Remission next week.  I will always have appointments every 4 months for now with PSA tests done each time.  As we are seeing "light at the end of the tunnel", my doctors still make sure and keep this real.  They remind me every visit that my cancer was agressive and that there is always the possibility that it might come back.  I like that about all of my doctors. 

So, as is suggested, study everyting you can and make the decision that is right for you, in your mind.  All of our cases are different, and thus need different treatments.  Make sure you are comfortable with what you will go through and make sure an know ALL of the side effects.  Ask as many question as you can.

There is hope.  Dont' give up.  Fight as hard as you can.  Exercise and nutrition is very important in the battle.    If you look around on this forum, You will find us talking about all the side effects, nutrition, exercise and fitness.  So, work out and stay as fit as you can.  This is a hard battle. 

Best of Luck

Know that you are in my thoughts and prayers

Peace and God Bless

Will

VascodaGama's picture
VascodaGama
Posts: 2987
Joined: Nov 2010

Ellesmere,

Your additional information makes me think that your doctor’s diagnosis of a contained case comes from the MRI results. He may have disregarded the PET data (and I would understand it) because of this being done two weeks after the biopsy. Messy traces of blood would be detected in the perforated zones of the prostate by the PET scan, and not considered for the localized assessment. The PET information may have been used in the assessment of far metastases.

In regards to the MRI results, it reveals a lesion (tumor) with 1.3 cm. This is the best a MRI can detect. Small sizes tumors were not identified but the biopsy found 14 spots out of 19 cores taken all over the gland. I would trust more the pathologist’s report than the image study. This is where the positive EPE weighs in.
The other comments in the MRI report are typical. The specialist only tells what is seen. He also identified hyperplasia which could justify/influence the existing higher PSA. Nearer lymph nodes looked “normal” in size but the location close to the pubic bone (inguinal) suggests suspicious. T2 and b value (AC 660) indicate the values used by the operator (radiologist) to turn the image into a readable status.

In this link you can see the anatomy and physiology of the prostate;
http://www.cancer.ca/en/cancer-information/cancer-type/prostate/anatomy-and-physiology/?region=qc

Here you can read about the MRI reading techniques;
http://mriquestions.com/what-is-the-b-value.html

Maybe you would like to have some comments on the biopsy and PET reports. Just paste them in this thread.

Regarding your other comments above, I image you being content with simple things. This is the way of living in the country side. You found a recommendable doctor and you trust him. However, you will be the one to confront the consequences from a treatment he is deciding (surely his specialty). There is nothing wrong with that but surgery or radiotherapy got risks that you should know in advance. You will be asked to sign an agreement before intervention saving the doctor and the hospital from any wrong doing. You will confirm that you are aware of the proceedings.

It is most advisable that you research and get second opinions as most of the guys above are recommending; once comfortable with things then advance with a choice (surgery or radiotherapy). I would consult other doctors even if I needed to travel far or even if I needed to post pone the scheduled surgery. The worries of spreading PCa are more a matter of gathered trustful information than the timing of the intervention. In fact the PET results (negative far metastases) provide a choice for intervention much later if you chose RT as prime. RT covers the whole gland and surrounding tissues.

Your yawning symptom may have been the “saving alarm”. The PSA was high the cancer was active and voluminous, and most probably would interfere with your country living standards. Your body fitness would never tell you such. B12 is not produced by our body. One must get it from animal sources or supplements. Fatigue is typical in B12 deficiency but so it is from a case of advanced prostate cancer.

Best wishes for peace of mind.

I wonder in which part of that continent you live. Ayers Roks?

VGama

 

Ellesmere
Posts: 6
Joined: May 2016

It is hard to believe that I only made my first posting on this board three days ago! In that time you blokes have taken me from feeling alone and not really knowing for sure what I was doing or why, to the point where I feel I've found a bunch of caring friends who recognised where I was and reached in to pull me up out of it! Thank you to everyone who has responded to my posts, and shared so much with me. I'm in a very much better place than I was three days ago!

I have to be away from base for four weeks from Saturday - there is really no way of getting out of it. So, I could be out of touch for a while, though in that time I will be pondering further on everything that everyone has kindly offered me. I should have the net some of the time, and will try to log back in when I can. I'll also be away from doctors for those four weeks!

Many thanks to Will and Hopeful (for short!), and to Vasco for the detailed observations and links - you were quite right about the way we live here in the country, but no, not near Ayers Rock (Uluru), but in Queensland - just across the Pacific from you.... 

And Old Salt - I take your point, and I suspect that professionally things are pretty much the same here as over there! 

 

 

Josephg
Posts: 155
Joined: Jan 2013

This group is the BEST!!

Here for you,

Was, and still is, here for me.

Will be here for the next person who needs a sanity check and advice.

And, I'm sure that you will join this team, and be here to support the next person who comes into this forum looking for help.

I wish you the best of luck and success on your journey.

xcancer
Posts: 11
Joined: Oct 2015

Just like most everyone said on here, get a second opinion. That is the least you can do and that way you will not regret going in a different direction later on. 

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