Oligomicrometastatic cancer

VascodaGama

Micrometastases

I wonder if we ever manage to identify and locate the tiny little buggers we call micrometastases. I would appreciate receiving opinions or any information you, ladies and gentlemen of this board, know or have found in your researches.
Unfortunately, I was again told that I have them and that, in my case, it will be difficult to radically eliminate the cancer with spot radiation as I have been hoping. I guess that now I may start using the term “oligomicrometastatic cancer”, to identify my case.

This week I had an 18F choline PET exam and was told by the attending Nuclear Medicine Physician Dr. Frederik Jonge (a 27 years veteran in the trade) that the whole body image does not identify cancer. He commented to believe that I have micrometastases which are hard to be found by radio nuclear isotopes (this comment surprised me). He proposed to give a second look but his final judgment on the images provided in the PET is that to be negative for adenocarcinoma.

Surely I will wait for his second looks but I also plan to get second opinions of other nuclear doctors. However, his comment gave me the impression that if the cancer does not spread wider I will never get a picture of the bandit. This is a big blow in my hope for an oligometastatic treatment to try and eradicate the bandit for good.

The first doctor diagnosing me with micrometastases was the oncologist Susan Slovin at MSKCC, back in 2002, but she was just guessing her opinion on my status. There was not much information or knowledge on the condition at those times. In fact the group of PCa specialists where she belonged was at that time engaged in qualifying the outcomes of salvage therapies comparing the results of earlier against latter attacks. Slovin was studying a series of recurrence cases all with different patterns of aggressivity and in one of her papers she defines the now famous term used by many physicians “6 months” as the longest period one could way till starting a salvage therapy.
She told me that micrometastases, even made up of low aggressive Gleason rates (<3), could be grouped with the worse cases in terms of difficulty to treat.

Many of the participants in this forum know about the details of my case from previous threads (links below). I will just add that along 2017, my PSA has risen reaching the value of 2.05 ng/ml (T=329), in the beginning of December (Sep; PSA=1.78 / T=306) which lead to the PET exam. This PSA level of 2.0 is recommended for 18F choline nuclear images if one wants to assure a positive image result. That was my aim this time and the reason for waiting the PSA to increase. Meanwhile, the cancer had a free ride but I will restart ADT and knock it down again. I got the impression that I failed and the bandit won.

My doctor wants to restart ADT with a PSA of 2.0 but I am tempted to allow extra time and let the bandit to continue in its frenzy parties of testosterone cocktails letting the PSA increase further to try again with a more sophisticated image exam such as the PSMA PET exam which I trust to be better than the F18 CH PET, but unfortunately, on this date this exam is not yet approved by the National Health (European) so that one would need to go private to have it, and this is not cheap. Another pitfall is that the exam may fail again because it depends on the characteristics of one’s case. So far many PSMA trials have been hold around the world (in the past 4 years) showing several isotope combinations that were better in delivering the PSMA (dotatate). One needs to choose the clinic using the modeling tracer (chelator of radionuclides) most appropriate to his own case. We need firstly to get a doctorate in the field for not erring.

My history of the past 5 years in these links;

https://csn.cancer.org/node/268900

https://csn.cancer.org/node/290854

Basic introduction of Image exams;

https://www.dovepress.com/cr_data/article_fulltext/s45000/45315/

F18 presents better image in lower resolution PET machines. A comparison of two modalities in this link;

https://www.ncbi.nlm.nih.gov/pubmed/26013479

My next appointment is scheduled for October 2018 so that I have time to see how things unwind. Surely before that I will decide on something.

Best wishes for 2018 to all comrades of this forum,

VGama

 

Tdoyle

set back

Sorry to hear about this news....

All the best to you

Troy

Old Salt

We all wish you the best of course

but I wouldn't call this finding a 'setback'. Your cancer has been under control without drugs for quite some time. And your strategy to not do anything until the PSA crosses a certain level makes sense.

Sit back, relax, enjoy a nice glass of (Portuguese) wine and take the dog out for a walk (not necessarily in that order).

And thanks for all you do to make this Forum 'worthy' .

Clevelandguy

Find it 1st?

Hi Vasco,

Let me first say thank you for all of your great input to this board.  On your case I agree that you have to find the cancer before you can treat it.  Might be wise to let your cancer "develop" some so you can find it with the scans.  If not the only othe thing would be some chemo to "nuke" your whole body which does not sound very pleasant.  Good luck......

Dave 3+4

contento

My Opinion

Vasco, I wish I could offer great advice but from a knowledge standpoint I can't. Just not knowledgeable enough. My sense would be to go back on HT .

My rhetorical  questions are :

 Why did you choose  2 ng/ ml  as your target ? Is  that the point of no return ? If you waited till you hit 3 ng/ml to do the image studies  would the HT still be effective ?  Even if the micrometastisis can be seen is it still curable ?

I certainly would not have the guts to let the cancer grow. With my luck it would be in ten different spots. For me I would continue on the HT.

I know everyone on this board wishes you the best and hope you make the right decision for your situation.

Good Luck -- contento

Old-timer

Good morning, Vasco

This part of your story, I do not understand. What I do know, and understand, is that, as always, you have my eternal good wishes. Should I say more?

Yes, I am here with you.

Old-timer (Jerry)

VascodaGama

Second opinion and second look into the F18-choline PET/CT exam

I want to thanks to all above posters. You are in my thoughts. I appreciate your comments and hope you too are fairing well in your own struggle with the bandit.

I received a second opinion and second look into the F18-choline PET/CT exam and the good news in the report is that they have not found far metastases or bone involvement. These two negative items would make thinking that I have no systemic disease yet. However, such would be real if micrometastases have not been diagnosed before. Micrometastases may exist but are so tiny that scans do not detect them. These buggers can grown later into apparent metastases if not treated and killed.
The bad news in the report is that they found “viable neoplasia tissue” at the prostate bed, the fossa (which was part of my SRT of 2006) and found abnormal activity at two inguinal lymph nodes on the left. The SUV at the fossa was at 10 minutes 3.4 which increased to SUV 5.5 at 80 minutes in the whole body image. The suspected LN involvement on the left had a SUV 2.0 at 10 minutes and 3.6 in full body image. The second LN presented a SUV of 1.8 but no activity later which could be judged as inflammation. No other relevant absorption of Choline at other relevant places including bone.

Typically, SUV of 10 regards cancer. SUV of 4.0 regards cells with anomalies. The meaning of viable neoplasia tissue refers to an abnormal growth of tissue caused by the rapid division of cells that have undergone some form of mutation. This could mean cancerous cells that could turn into a tumour. The strong uptake of choline could also refer to inflammation. Here is some explanation on the term;

https://www.sciencedirect.com/topics/medicine-and-dentistry/neoplasm

The above report from two nuclear physicians does not present any recommendation. My next step is in the hands of my uro-oncologist but I think that only radiation would be feasible to attack the fossa and the lymph nodes with intent at cure. This is the purposes of oligometastatic treatment and I am curious to hear what he says, however, before meeting him I plan to have a consultation with the radiologist of my previous SRT (2006) to be certain on the risks of “rads over rads” if the area involved received already the full dose in limits of radiation absorption. He has the isodose plan used at that time and knows what was radiated.

Unfortunately, the findings regard previous treated areas and not spot tumors located at propitious places. As you may image, I am very concern with fistulas or chronic wounds at the colon and bladder due to additional radiation which would prejudice much my quality of living.

Recently I have experienced abnormal bowel movements giving me very short time to get to the toilet. I also experienced more frequent urination with traces of blood. All of this seam to relate to late side effects from the radiation. It could be inflammation of the scar tissues and that could also be part of the SUV (choline) uptake in the PET scan. I have requested a colonoscopy to my GP to get more details on the cause of above BM. I also got a PSA which for my surprise turned lower at 1.68, down from 2.05 ng/ml of two months ago. I am again far away from the end of the vacation period of my IADT.
A friend oncologist will try to put me into a 68Ga PSMA PET exam.

Will keep ya informed of any future development.

Best,

 

VGama

 

contento

Thanks

Thanks for the update Vasco. I'm sure I can speak for everyone in that we all wish you the best in your journey and thank you very much for all the advice and support and encouragement you provided over the years. Continue the battle , your strong, your smart and I have faith you'll do well. -- thanks Vasco

hopeful and optimistic

.

Wishing the best for you.

My prayers and thoughts are with you, for recovery.

Pan

Hey Vasco ... you wrote:

Hey Vasco ... you wrote:

I wonder if we ever manage to identify and locate the tiny little buggers we call micrometastases. I would appreciate receiving opinions or any information you, ladies and gentlemen of this board, know or have found in your researches.
Unfortunately, I was again told that I have them and that, in my case, it will be difficult to radically eliminate the cancer with spot radiation as I have been hoping. I guess that now I may start using the term “oligomicrometastatic cancer”, to identify my case.

 What you describe is not "oligo" at all. "Oligo" means "few".  You have zero visible mets and an unknown number of (possibly many) micromets. I am in the same boat and have been advised to go ahead with systemic treatment (ADT) as there is no way to spot treat with radiation or surgery excision when there are no spots detected.  Yet, my PSA is doubling every 6 months or so. When I had my Gallium 69 PSMA PET scan a few months ago, I was kind of hoping for mets so that my RO could zap 'em. 

VascodaGama

Interesting meeting with the radiologist

Thanks again for the well wishes and the opinions.
Pan, you are right. The term “oligomicrometastatic” doesn’t exist. This was created in my mind probably to make me believe that I am over the topic and that I know what is happening. This gives me the strengths to be above the bandit and knock it down. ADT is already reserved. I am just investigating any possibility in deceiving the bandit with oligometastatic treatment.

The PET scan did in fact identify neoplasia tissue though to be cancer. However, I believe that the PET exam did not detect the whole cancer. The unseen little ones may develop into big ones in the future leading to additional recurrences. In any case, for people like you and me, the theme Oligometastatic (a fewer number of tumors, 5 max) may be thought as an additional phase in the sequential therapies post failed radical and salvage treatment, before one succumbs to ADT and chemo. There is no proven cure with the subject but the practice has been most successful in extending the period on free-biochemical failure. The lucky ones may hit the jackpot when irradiating the solo existing tumors. Cure is the aim and it can be in the horizon. Surely one should never put into jeopardy the quality of life so that such a treatment should only be done if propitious areas are identified.
In such regard, some of our comrades here have done this sequential by repeating the radiation treatment extensively, not just covering a fewer number of metastases but treating an identical number of areas/spots with identical dose. Dattoli, Sarasota, has been doing this sort of late salvage therapy.
I wonder about your story. Can you please provide more details on the results of the 68Ga PSMA PET exam. What was your PSA at the time of the test? Do you have still the gland in place? What is your present PSA histology?

Two days ago I had an interesting meeting with the radiologist/therapist who did my SRT of 2006. He was surprised with the F18 choline PET indicating “possible recurrence” at the prostate bed (radiated fully by him before). I felt that he did not want to admit RT failure at the areas of 2006. He thinks that the increase of the PSA is from metastases away from the area identified at the scan, and that the detection was due to inflammation. The truth is that other areas did not accumulate high SUV. Denying the results is like not trusting the capability of F18 choline PET exam in PCa detection. Am I right?

According to this radiologist, radiating any apparent metastasis even if that is located at areas already irradiated is valid if the irradiation had been done 5 years before. The risks of “rads over rads” on my case of 11 years post SRT is dismissed because radiated tissues are thought of having recuperated fully. The limits of radiation absorption are not an important issue in my treatment. In any case, before any RT treatment, he recommends to check the condition of any existing scar tissues from previous radiation. I am scheduled already for a colonoscopy and cystoscopy.

If everything is found normal, and we decide on radiation, then he recommends me in having the 68Ga PSMA PET/CT scan at their facilities which CT computer data can then be introduced in their Truebeam RT system for mapping the field to be radiated. Everything fits perfectly but I just wonder if we can trust more such PSMA exam than the F18 choline done with a PSA level of 1.80 ng/ml. I hope someone here can give me ideas.

Another surprising conversation from the radiologist was about his recommendation on a hyperthermia application to improve/strengthen the immune system. It seems to be common advice at radiation facilities to RT patients. He suggested having the hyperthermia now before the next PSA. Why?
I know that hyperthermia is recommended as an adjunct administration to enhance the effects of prime therapies like ADT and chemo. Less resistant hormonal dependant cells may be killed.

http://jcmtjournal.com/article/view/2272

 

I left a copy (cd format) of the F18 PET for him to check and provide me with a second opinion.

Thanks to all of you.

Will keep ya informed of any future development.

Best,

VGama

 

Old Salt

Pan said:

Hey Vasco ... you wrote:

Hey Vasco ... you wrote:

I wonder if we ever manage to identify and locate the tiny little buggers we call micrometastases. I would appreciate receiving opinions or any information you, ladies and gentlemen of this board, know or have found in your researches.
Unfortunately, I was again told that I have them and that, in my case, it will be difficult to radically eliminate the cancer with spot radiation as I have been hoping. I guess that now I may start using the term “oligomicrometastatic cancer”, to identify my case.

 What you describe is not "oligo" at all. "Oligo" means "few".  You have zero visible mets and an unknown number of (possibly many) micromets. I am in the same boat and have been advised to go ahead with systemic treatment (ADT) as there is no way to spot treat with radiation or surgery excision when there are no spots detected.  Yet, my PSA is doubling every 6 months or so. When I had my Gallium 69 PSMA PET scan a few months ago, I was kind of hoping for mets so that my RO could zap 'em. 

Good point

The term 'oligomicrometastatic' has no (generally accepted) medical meaning and shouldn't be used.

hewhositsoncushions

Vasco

Vasco

Your comment about hyperthermia made me think of something. Hypothermia.

Have you heard of Wim Hof? He is the guy who can clmb Mt Everest in his undies.

Apparantly his breathing and cold water acclimation excercises have a really good effect on the immune system.

Unfortunately there is a bit of a cult around him but there is hard scientific evidence that his methods do work.

C

VascodaGama

Developments of my case

This April celebrates my 6 years since I stopped ADT and started the long period OFF drugs. I am free of the ADT side effects but the bandit has been gaining ground at the place it hides. The PSA that was <0.02 in April 2012 is today (Apr 2018) 1.83 ng/ml. Along these years of continuous increase I saw it fluctuating reaching at one occasion the mark of 2.0. I have no prostate in place so that bounce is not expected to occur. The doctor following my case has no explanation for the fluctuations, but there is that theory that metastatic cancer takes long before it settles at a different tissue. Our immune system prevents cells from travelling and fixing at areas where these do not belong.  Unfortunately, some manage to escape the screening and, in time, progress invading newer environments and forming tumors/colonies.
I would think that the occurrence most likely cause sort of bounce in the PSA if let alone.

Since my last entry in this thread, I have done a colonoscopy that found radiation proctitis in addition to diverticulitis. Radiation proctitis can become a barrier for additional RT in the area. Radiologists do not recommend radiating areas twice when proctitis are found because of the risks for fistulas. I have still a cystoscopy to be done to check the urethra and bladder condition but lately I have been experiencing cases of hematuria, which makes me think of radiation cystitis. These would surely prohibit an oligometastatic treatment involving RT.

If my doctor disqualifies me from radiation therapy for the findings then I will try discussing with him about the possibility in dissecting the infested lymph node identified in the PET exam I explained above. I can then restart the newer period on drugs as defined in the IADT protocol of 2010. ADT has worked before and I believe it will work well again.
I have been reading a lot about rads over rads and it seems that the risks of radiation are greater than the benefits when considering the quality of life.

Wishing the best to all comrades.

VG

 

Clevelandguy

Good luck

Hi Vasco,

Good luck on your continuing journey with Pca.  If anybody can find a way past this it's you, you have a lot of knowledge in this area.  Are there any type of new immunotherapy procedures that let your body use it's own defenses to atack the cancer?  See the link: 

http://www.cancerfightersthrive.com/immunotherapy-using-your-own-immune-cells-to-fight-cancer/

Dave 3+4

lighterwood67

VascodaGama said:

Developments of my case

This April celebrates my 6 years since I stopped ADT and started the long period OFF drugs. I am free of the ADT side effects but the bandit has been gaining ground at the place it hides. The PSA that was <0.02 in April 2012 is today (Apr 2018) 1.83 ng/ml. Along these years of continuous increase I saw it fluctuating reaching at one occasion the mark of 2.0. I have no prostate in place so that bounce is not expected to occur. The doctor following my case has no explanation for the fluctuations, but there is that theory that metastatic cancer takes long before it settles at a different tissue. Our immune system prevents cells from travelling and fixing at areas where these do not belong.  Unfortunately, some manage to escape the screening and, in time, progress invading newer environments and forming tumors/colonies.
I would think that the occurrence most likely cause sort of bounce in the PSA if let alone.

Since my last entry in this thread, I have done a colonoscopy that found radiation proctitis in addition to diverticulitis. Radiation proctitis can become a barrier for additional RT in the area. Radiologists do not recommend radiating areas twice when proctitis are found because of the risks for fistulas. I have still a cystoscopy to be done to check the urethra and bladder condition but lately I have been experiencing cases of hematuria, which makes me think of radiation cystitis. These would surely prohibit an oligometastatic treatment involving RT.

If my doctor disqualifies me from radiation therapy for the findings then I will try discussing with him about the possibility in dissecting the infested lymph node identified in the PET exam I explained above. I can then restart the newer period on drugs as defined in the IADT protocol of 2010. ADT has worked before and I believe it will work well again.
I have been reading a lot about rads over rads and it seems that the risks of radiation are greater than the benefits when considering the quality of life.

Wishing the best to all comrades.

VG

 

So Many Choices

Well, comrade, I certainly wish you the best in this journey.  I really do not believe this journey is ever over and no two are a like.  You have set yourself up with your core knowledge.  To be honest with you, I would hate to be your doctor because in some cases you seem to be more knowledgeable then they are.  So here we go, a decision will need to be made based on our best options weighted by quality of life.  This decision belongs to you and you alone.  So best of luck to you.

Old Salt

Best wishes

Difficult case, that's for sure. One option is to do nothing at all for the time being and maintain a relatively good QOL. But I gather you are inclined to be proactive (which may not be the right word). Anyway, best wishes with the decision on how to proceed.

VascodaGama

Immunotherapy; attack or defense system

Thanks for the comments.

Dave;

Along my history with the cancer (since recurrence in 2001), I have come across many studies regarding the capabilities of our body’s built-in defense system to tackle the bandit, Not deeply but I have followed trials involving the immune system to treat prostate cancer. They all tend to address the idea of creating the means to force an attack instead of just defending (palliative). I recall one in 2001 that involved a typical cold-virus mixed with cancer cells so that those could be recognized and get killed with an immune response. This was the start of immunotherapy that included vaccines principles. Transforming cancer cells into targets using radioisotopes was also used in the development of the newer image exams. The radio tracer apart from identifying/locating the microscopic cancer it can kill such a cell it attaches to on-the-spot, depending on the radio-substance used in the action (LU177 has been used to treat several types of cancer). Provenge was born from there and so it was the ProstaScint therapy.

The link you provide above steps into the genetics of cancerous cells. Just like the PSMA unique of prostatic cells it uses the DNA to identify those bandits turning these into targets for our immune system’s attack. The principle of the therapy is the same but it requires having an immune defense in-shape to have the best results. Cell's receptors used as targets will require the therapy to be done before chemo or ADT as these are known to affect both; deteriorate the immune system and transform/mutate cell's receptors. I think that Gene therapy cannot aim in combination treatments.

The Immunotherapy in fact is not new but it has not been as explored as it could in cases involving cancer. Hyperthermia and hypothermia that invokes an immune reaction was very much used by our ancestors to treat several maladies. It is very much used today in treating simple colds or fever. These are disguised in saunas or icy baths that cause a sense of well being if not just a good feeling. Some studies, done to ascertain the benefit of such ancient therapy found that hyperthermia used in combination with ADT and Chemo provided better outcomes. Nobody knows exactly what the cause for the improvement is. It could be due to an attack by the immune system or an enhancement of the administered drugs.

Nobody has claimed yet victory. We need yet to find that silver bullet.

Best wishes to all my fellas.

VG

VascodaGama

Conclusion on the results and recommendations from my doctor

I had my annual consultation with the uro-oncologist following my case and was recommended to restart ADT instead of procuring an oligometastatic treatment.

In other words, he rejected radiation intervention or surgically dissections of inguinal lymph nodes set in non propitious areas that have been identified by PET and that have already under gone interventions. He based his response on the PET results, the findings from the cystoscopy and colonoscopy (radiation cystitis), and past history of treatments. In his words the risks of RT outweigh the benefits it could provide.

“… RT could free you from the bandit but it would not free you from the nasty RT side effects that will occur in view of the present clinical status. The area identified by PET is not propitious for additional RT because it has already reached the limits of radiation absorption and due to existing radiation cystitis and proctitis. You may find doctors willing to radiate the area but neither the EUA guidelines nor the NHS recommend such approach in radiating tissues in the pelvis twice.”

Unfortunately the results were not in my favor. I have to abstain from my intent in oligometastatic treatment and continue with my systemic approach (intermittent ADT) of 2010.

This time the uru recommended a monotherapy with Casodex 150 mg daily pill, alone. His reasoning in monotherapy is based on the long indolence period of 6 years I had during the vacation off drugs (since 2012).
Surely this is not what I expected. My understanding is that I should be driven into remission levels (PSA< 0.05 ng/ml) and be kept at that level for a full 12 months before given up again with ADT. I wonder if Casodex alone can do the job.

In any case, this NHS hospital has done some arrangements in its organization and has subdivided urology into separated specialties. The present uro was moved to attend only bladder related cases. That makes me to change doctors so that the next appointment (in December 2018) will be with a specialist in prostate care alone. I got his name and found that this new urologist has been involved in researches involving the famous hyperbaric oxygen treatment (HBOT). He has written several papers on the matter. It may be good to have him as my next attending doctor in case any radiation cystitis or proctitis get worse and I need HBOT treatment. Meanwhile I just hope that he follows the principle of the IADT, that invokes On and Off switches based on PSA levels and periods in remission. I wonder his personality, if we can trust each other.

Best wishes to all reading my story.

VGama 

Georges Calvez

All the luck

Hi Vasco,

Best of luck, if anyone knows how hard battling PCa is, it is you.
It will be my birthday on Monday and I will think of you as I raise a glass of Tullamore Dew.

Best wishes again,

Georges

Josephg

Changing Doctors

I well understand your concern regarding changing doctors in the middle of a battle with the bandit.  A few years bacy, my original Oncologist left the practice to do research only, and I was referred to another Oncologist.  In some respects, it is like starting over again.  Developing a new positive relationship and building the needed trust with the new doctor takes time, and while a positive outcome in the new relationship is likely, it is not guaranteed.

I wish you the best outcomes in this new phase of your journey.  As Georges stated, nobody on this forum is as well informed, knowledgeable, and better prepared to transition and move forward on this new phase of your journey, than you are.