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bone tumor after removal, radiation, and hormones

jack396's picture
jack396
Posts: 5
Joined: Nov 2019

I had prostrate removed 10 years ago.  I am 71 years old. Two years ago, I had a hormone shot and prostrate bed radiation.  Now, my psa is rising about 1 point every six months (currently 2.0).  A recent bone and cat scan has discovered a small tumor on my rib at the center of my back.  I have an appointment with my cancer specialist in three weeks.  I would like raiation to zap it, but it seems the doc wants the hormone route.  For those who may have been in this situation, what have you done and how successful was it?  Also, I am wondering if more tumors will pop up in other places, and how long it will take.  I know if untreated, that will be the case.  I have read that it is unusual for the cancer to spread to a bone with such a relatively low psa, but here I am.

Any feedback is appreciated.

VascodaGama's picture
VascodaGama
Posts: 3205
Joined: Nov 2010

Jack

Welcome to the board. I think that you are looking for information on oligometastatic cancer. This is the name given to metastatic cancer that has spread localy or at far places, found in spots colonies. Typically these are diagnosed after failed major therapy that involved radiation and that is composed of a fewer number of identified spots.

The treatment of metastatic cancer is done with palliative intent using hormonal drugs, chemo or immune therapy in various combinations. However, when the number of the identified spots (via image exams) are lesser than 5, some doctors recommend spot radiation. In fact spot radiation can provide cure but this oligo-treatment has strict conditions attached that make doctors skeptical in recommending it. The problem is that radiation applied over previous radiated areas is "dangerous" as it may cause fistulas. In other words, oligo-treatment is only recommended if the spot is located at beneficial areas (trouble free away from organs) and at places that were previously radiated but where the tissues have fully recuperated. According to my radiotherapist, the consensus is that radiated tissues with short-term (acute) injury recuperate after 5 years from treatment but those none malignant cells surrounding the cancer that were also affected could have long-term (chronic) radiation injury, typical of RT, namely colitis, proctitis, etc.
Unfortunately, radiation therapy that is always applied balancing between destroying the cancer cells and minimizing damage to the normal cells cannot fully assure its principles.

Your comment above regarding "... ... tumors will pop up in other places" is possible to occur as the image techniques (radiologic science) got limits in detection of microscopic cancerous cells. The best approach is the PET using isotopes tracers specific to prostatic cells, such as the 18F-PSMA and 68Ga-PSMA. The fact is that PET woks at cellular level so that it manages detection independently of the PSA level. CT and MRI work on volumetric shapes detecting tumours when these got to certain sizes making smaller lesions invisible. The bone scan you have done manages to identify lesions in bone but it does not detect cancer in soft tissues.

I have been hoping for an oligometastatic treatment with spot radiation since my failed SRT of 2006. Along the years I did several scans with CT and MRI but these gave me only false negatives. PET techniques have become acceptable recently and in my case the 18F Choline PET (2018) managed to locate malignancy at the prostate bed. This is the area that received radiation treatment (68 Gy) in 2006. The radiotherapist wanted to radiate the area again thinking that the tissues got already many years of recuperation. However, he demanded me to get another PET (2019) this time with the more specific 68Ga-PSMA which results were negative to cancer (false negative). For such a reason he refused to recommend radiation of the prostate bed.
I have to get a positive image to have targets for the radiation. You can read my story in this link;

https://csn.cancer.org/node/314326

Several guys in this forum have reported doing oligometastatic treatment. Many have just repeated the full RT protocol, because many years have passed since their treatment. One good friend of mine with failed RP and SRT did spot radiation in 2015 of one spot identified in the ilium (bone). Fortunately I believe that he managed to get rid of the bandit, as all tests for cancer (blood and image studies) have been negative ever since.
You may be interested in reading this link about oligometastatic therapy at Johns Hopkins (try finding a site that allows you to read the article without signing up);

https://www.medscape.com/viewarticle/918509#vp_1

Please note that high Gleason rates produce little amounst of PSA. I wonder about your story. Can you share mode details of your case? What was the Gleason grade diagnosed ten years ago? What was the level of the PSA before starting hormonal (ADT)?

You comment that the PSA is increasing in spite of the ADT. Are you sure that the the drugs have been administered properly? Have you tried second line hormonal drugs?

Best wishes and luck in your journey.

VGama

jack396's picture
jack396
Posts: 5
Joined: Nov 2019

Thanks for your response.  Let me be a little more detailed about my case.  In 2008, with a psa of 5.02 and a gleason of 4+3, i had my prostrate removed.  All was quiet until 2016 when my psa started to go up again, slowly, and when it reached 1.4, i had a hormone shot, and 38 prostrate bed radiation treatments.  This was the only hormone shot i had.  Once again, the psa started creaping up, and now it is about 2.  I had the bone and cat scan recently, with the bone scan detecting a small leshion of my rib near the center of the back.  I am somewhat troubled to learn that there may be other activity in my body that the CAT cannot detect.  The only radiation I have had is the mentioned series in 2016 to the prostrate bed.  Would radiation to the affected rib be a good direction?  The guess hormones would suppress growth in other not yet detected areas.  Perhaps the PET would be another good option, as you mentioned.  I am doctoring at UPMC Hillman Cancer Center in Pittsburgh, so I feel ok with the knowledge base there.  I want to digest the other info you presented.  You seem your knowledgable and I thank you for this, and any future "words of wisdom".  Jack

VascodaGama's picture
VascodaGama
Posts: 3205
Joined: Nov 2010

Jack,

I believe that trusting the team treating us is a good step forward for the success of the treatment. However it doesn't hurt if we understand the basics. Knowledge will be helpful when meeting the doctors and these prefer discussions with patients that understand the facts. They do not like becoming sort of professors teaching each and every patient that visit them. I would suggest you to take these two weeks before the next meeting, investigating further and preparing a list of questions for the occasion. One should also consider that doctors follow the guidelines of their associations so that many do not like people that discuss against those principles. We the patients need to use diplomacy when talking with them.

According to your above information, you were never on ADT (androgen deprivation treatment aka hormonal therapy). The purpose of the shot you took in 2016 was to increase the success rate of the radiotherapy in the combi HT+RT. It is known that adding HT before the radiation (RT) one can expect about 35% more benefits in the outcome of the RT.
When talking about ADT (hormonal treatment) this is done continuously or intermittently during a certain period of time that usually lasts 18 months, all done under certain control, which effects are usually verified by the fluctuating PSA (tests every three months), the testosterone and symptoms.
The effects of the shot of 2016 have ended two years ago. Any PSA taken since 2017 is not masked by the HT and is useful in the judgment of you status.  Surely a PSA of 2.0 ng/ml three years post SRT is indicative of recurrence.

The step done by your doctor this time in trying to locate the bandit hideaways is correct, but using a CT is not enough (in a case with a PSA of 2.0 after SRT) if the intent is to decide on a sequential treatment with intent of cure. I think that your doctor is considering you with a systemic advanced case due to the finding of bone involvement and the Gleason grade 4 that is the primary in the sum 7 (4+3). Such cases are usually treated with palliative approaches that lead to reserve any spot radiation to occasions when pain (in bone) becomes unbearable. They treat pain in metastatic bone joints of advanced cases with radiation that also manages to eliminate the localized cancer.

In your next meeting I would inquire about his opinion on your present status. Surely you can request them to radiate the spot identified in the bone scan but you need to get the consensus of your radiotherapist that got the isodose plan used in the SRT of 2016. He can tell you if the present spot is in conflict with any prohibition for its location. (Please let us know which rib of the thoracic cage is affected?)

Palliative approaches start with a first line ADT. Typically it involves two blockades using antiandrogens (bicalutamide) plus LHRH agonists or antagonists (Lupron, Firmagon, etc). Aggressive cases add chemotherapy to the mixture (HT+Chemo). Both treatments cause side effects but ADT may be friendlier. Both do not cure. ADT manages control over the bandit during many years keeping the cancer indolent. Similar to you, I come from failed RP and SRT and am now on intermittent ADT since 2010 (I am 70 today). Somehow I managed to keep the bandit quiet enough with a solo blockade of Eligard (same as Lupron). While on vacations from the LHRH drug (intermittent involves periods free from drugs) I have risen that idea in doing oligo-treatment, aiming cure. However, I have no identified bone metastases or distant spread of cancer as per the PET and BS scans.

I believe that you can also pursue an identical program by investigating more about your real present status checking for any possibility in cure. Palliative approaches can be started at any time as these do not cure and do not provide significative better results if started earlier. Discuss with your doctor and get second opinions if necessary. You can base your "List of Questions to the doctor" on my above comments but you should do more researches googling the themes of your interest.

Links to help you;

https://www.cancer.net/navigating-cancer-care/diagnosing-cancer/questions-ask-your-health-care-team

https://www.sciencedirect.com/science/article/pii/S221308961500002X

https://www.sciencedaily.com/releases/2016/09/160906145843.htm

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6424235/

You will do well too.

Best wishes,

VGama

 

jack396's picture
jack396
Posts: 5
Joined: Nov 2019

VGama....  I thank you for your info and comments.  They are truly valued, as it is good to talk with someone knowlegable.  I have little opprtunity for sharing, except what is provided by the docs, and I have experienced a skeptical attitude, based on other medical issues with myself and family members.  But, at the same time, I have to rely on those more knowledgable than myself.  This is why I appreciate your input.  You have been down the road with this stuff, and it seems you have made wise choices and are doing okay, all things considered. I wish you many more years, and I believe that will be the case. I read tons of material on the web about PC.  Some gives me hope, and some depresses me. Some confuses me, and some makes sense.  This is why your thoughts are valued.

I had the hormone shot in 2016 just before the radiation.  The side effects were tough.  After the shot wore off in 9 months, my psa started to go up again, which tells me that the prostrate bed radiation had less than satisfactory results, and the hormones were probably responsible for the psa going down at the time.  In your opinion, should I be asking for the PET at this time?  The doc did mention the PET at my last appointment, but did so in the context that it might be given if the CAT/bone was negative, which, of course, it was not.  I wonder if there are microscopic cells elsewhere?  Interestingly, I read a medical report that said that bone leshons were unlikely unless the psa reached 40-50, and even did not recommended screening until then. But here I am. I had some telephone conversations with the PA after my scans (I am 2 hrs drive to Pittsburgh) and she seems to want me to do the hormone shot, and the radiation will be discussed with the radiation oncologist at my appointment.  Do you recommend the hormones, whether I get the radiation or not?  I know the hormones will hold off the ugly beast, and I will do the shot, if it will keep things from progressing.

Can you explain better your last paragraph?  Thanks for all the links.  I will study them all.  Once again, VGama...I thank you.  Jack

VascodaGama's picture
VascodaGama
Posts: 3205
Joined: Nov 2010

Jack,

Survivors in this forum are not doctors. We help the many with opinions based on own experience or from researches done along the years while being continuous patient. I have been fighting this disease since 2000 when I was just 50 years old. I learn that there is lot of guessing in PCa affairs and that the best is to be positive, proceeding coordinately and timely without fears from the unknowing, but always trying to keep the quality of life.

In your shoes I would get the PET scan before starting ADT as recommended by your doctor, even if you abstain later from getting an oligometastatic treatment (spot radiation). Most probably the CT has provided a false negative which is now discarded by the doctor for the positive BS. In any case, the PET gives you more confidence on your real status. One can guess that there may be also "microscopic cells elsewhere" not identified, however, with the PET the investigation procedure is complete and it will provide that feeling that you have done the best to locate the bandit.
PET exams are not cheap and some insurances in USA do not cover the costs. One can try getting involved in one of the free clinical trials provided freely by the government (NCI). You can inquire with your doctor if he can introduce you in to one of the trials. Some restrictions apply so that you shouldn't be under the influence of the hormonal drugs. Please read the following links;

https://www.cancer.gov/about-cancer/treatment/clinical-trials/intervention/fluciclovine-f18

https://www.cancer.gov/about-cancer/treatment/clinical-trials/intervention/gallium-ga-68-labeled-psma-11

https://clinicaltrials.gov/ct2/show/NCT00002981

As commented before, I would not start ADT without a definite plan in hand. You should have a detailed protocol with the description of the drugs involved, doses and timings of tests, etc. I think it better that you get the consultation firstly and take some time to decide and follow what gives more comfort. I understand that the hospital is far from your home which may tempted you to get all done at the same time, however, the HT shot would only be administered after two weeks on antiandrogens to avoid flare (a surge of the testosterone), in particular because you have bone metastases.

Surely at this time you can opt by starting ADT, postponing any oligo-treatment to the future when you have more evidence on the location of the spots. However, if you decide to get the PET with the purposes of spot radiation then ADT should be done after the RT to obtain straight results. ADT can be started at any time and it will work the same started at PSA=2.0 level or at PSA=5.0 level, if your cancerous cells are hormone dependent, which seems to be what you have experienced in 2016.

I also recommend you to obtain before ADT a DEXA scan to verify bone health and a testosterone test to check later the effectiveness of the HT shot. Many of us got osteopenia or, worse still, osteoporosis without knowing and such condition requires to add bisphosphanates (Prolia, etc) to the hormonal treatment. ADT affects the bone. You should include this item in your list of questions to the doctor. Read this;

https://www.cancer.org/treatment/understanding-your-diagnosis/advanced-cancer/treating-bone-metastases.html

Best wishes,

VGama 

 

jack396's picture
jack396
Posts: 5
Joined: Nov 2019

VGama....thanks again your your thoughts and insights.  If I were to have the PET, and if other locations are identified with cellular cancer cells, what would likely be the treatment at this point, if any?  Obviously, the knowledge of the state of my cancer is benefit enough, but beyond this, what treatment is usually prescribed?  Is radiation an option?  What if the bad boys are identified in multiple locations, would they radiate in all these areas?  How are the cancer cells prevented from moving on to other organs, other than the use of HT?

I have been thinking of the PET, and your suggestion strengthens my thinking in this regard.  I think I will call Pittsburgh and see if this can be scheduled on the 20th.  Is there any reason that my request would be denied, that you know of?  I believe there may be some issues with insurance, as my doc mentioned that they would only pre-approve this procedure if the CAT was negative, with it was not, if I understood him correctly?  I wonder if this is the case everywhere.  I do think it is a good idea.

I understand your comment that ADT can be delayed, as we develop a detailed plan, and any further tests or RT.  I agree with this thought process, but I get concerned that delaying HT provides more time for the cancer to grow and spread.  But this may be secondary to a thoughtful, planful approach.

Once again, thanks, as I think all this info through.  Fortunately, I have the time to do this before my appointment.  Jack

VascodaGama's picture
VascodaGama
Posts: 3205
Joined: Nov 2010

Jack,

I have answered your question " what treatment is usually prescribed? " at above posts. If you manage to identify the location of the bandit then you can radiate it or dissect it, but if you have no targets to aim at or if these are located at places not feasible to radiate or dissect (eg; in an organ, deeply at areas difficult to reach, at places where the quality of life would be in prejudice if treated, etc) then the sequential treatment is systemic, usually made up of combinations of hormonal manipulation, chemotherapy or immunotherapy. That is the principle suggested by your doctor. In other words, he would be telling you that the means for cure have been exhausted. Many guys in our shoes decide to still try holistic means but sincerely that is a waste of time and money.

I do not know what arrangements you have with the hospital treating you, or which arrangements they have with your insurance. Probably their protocol is to do PET only if other image exams have failed. However, you can insist in having the PET even if the insurance pays only a portion. And, surely you can postpone the consultation of 20th to the time when those aspects are all defined and clear. Call the PA to check what is behind.

Regarding your fears that cancer "... grow and spread ..." if you delay HT, this is an erroneous way of thinking. Surely the cancerous cells multiply every day but do not spread that easily. It takes months and years to travel around the body. That spot at the rib took ten years since your initial diagnosis to travel and setup shop at that spot. Probably it belongs to a nucleus of malignant cells that traveled together but did not manage to survive the newer environment. You can try to identify if other malignant tissues exist or if the metastatic cancer is only that one spot. Other wise you can just opt for systemic approaches. In any case these should be done following due standards.

Best,

VG

jack396's picture
jack396
Posts: 5
Joined: Nov 2019

VG... thanks....I have much to think about.  I will keep you posted.  Jack

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