When is the time for a Medical Oncologist?

ncobjim
ncobjim Member Posts: 37
in Prostate Cancer #1
Back from my 5th PSA since IMRT in 2010. Have had 3 straight increases which is probably recurrance. Uro said i could wait for another 6 months for the next PSA or talk to a M/O if i wanted to. Not my regular Uro who is on sick leave so not sure what to make of him.
Very young and i feel not much experience. Tried to contact my R/O but have not got a call
back. When is the right time to do this?

Diagnosed 2006
PSA 4.8
Stage III (pT3b NO)
Gleason 3+4=7,bilateral tumor, extracapsular extension,focally positive margin, and
perineural lymphatic invasion.
RP Sept. 2006
PSA 0.05 post op
PSA 0.05 2007 and 2008
0.1 May 2009
0.2 Nov 2009
0.4 May 2010
6 month Trelstar HT July 2010
38 IMRT Treatments Aug-Sept 2010
PSA 0.06 Nov. 2010
0.01 May 2011
0.04 Nov 2011
0.1 May 2012
0.19 Nov 2012

Comments

  • 142
    142 Member Posts: 169
    #2
    Time for a Med. Oncologist
    In a word, Now.
    You have done what you can for localized PCa. There is a possibility that your PSA could level off at a low number still, but it could also be systemic now. An oncologist with experience in PCa is the next logical step.
  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #3
    142 said:

    Time for a Med. Oncologist
    In a word, Now.
    You have done what you can for localized PCa. There is a possibility that your PSA could level off at a low number still, but it could also be systemic now. An oncologist with experience in PCa is the next logical step.

    Oligometastatic cancer
    Jim

    I am sorry for the increase. I think that you are experiencing recurrence again.
    With no prostate in place only metastatic cancer could be producing such numbers of PSA. Your nadir may have been lower than 0.01 but the constant rising on the three readings diagnosis you with recurrence as per NCCN, ASCO, etc., recommendations.
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1477616/

    The PSA in six months time may not alter the diagnosis so that it is time for you to consider a consultation with an oncologist specialist in PCA. Your Urologist may be "out of touch" in your continuing care.
    The doubling (PSADT) in your case is lower than 9 months which makes it critical of considering to start hormonal treatments in the close future.
    The threshold PSA of 1.0 ng/ml was the level used by my uro-oncologist in my case, however we are different and should not compare the diagnosis.

    You could try to check for oligometastatic cancer which relates to few spots of localized tumours that may be successfully radiated with focal therapy, and therefore providing a chance at cure. This relates to a stage where cancer sets before proceeding to become systemic. A pioneer on the treatment of oligometastases is Dr. Myers. You can listen to his video in this site;
    http://askdrmyers.wordpress.com/category/ogliometastatic-disease/

    Here is the link to discussions on the procedure at Heallingwell forum;
    http://www.healingwell.com/community/default.aspx?f=35&m=2245716

    I recommend you to get details from other sources by googling this sentence;
    “Oligometastatic prostate cancer”

    In any case, the treatment requires the need in findinf those spots firstly and that is difficult but the newer contrast agent Feraheme has demonstrated success in some cases of image studies done with a MRI. The name given to the procedure is USPIO MRI scan. Here are links related to the capabilities of the contrast agent;
    http://www.ncbi.nlm.nih.gov/pubmed/16101198
    http://www.ncbi.nlm.nih.gov/pubmed/19401573

    Caseyh (PCa survivor in this forum) has experiences on the modality. You may inquire about his results.

    I would recommend you to read about HT procedures and the risks and side effects from the treatment, which is not new to you.
    A good book on hormonal manipulations written by Dr. Myers is;
    Prostate Cancer: Hormonal Therapy & Diet

    Wishing you luck in this continuing phase of your journey.

    VGama
  • caseyh
    caseyh Member Posts: 63
    #4
    Time to move on
    My surgeon is Urologist-In-Chief at a major NY teaching hospital and Chairman of the Department of Urology at its Ivy League medical school. When my PSA began to rise two years after surgery, he advised me that it was time to move on to a medical oncologist. He offered any help that I might need making the transition. I have always admired him for distinguishing between his role and that of a medical oncologist.

    Not all medical oncologists are a good choice for PCa patients. Try to find one that specializes in PCa even if it involves considerable travel on your part. You will most likely be managing this disease for a long period of time. The right doctor can make a big difference.
  • ncobjim
    ncobjim Member Posts: 37
    #5
    caseyh said:

    Time to move on
    My surgeon is Urologist-In-Chief at a major NY teaching hospital and Chairman of the Department of Urology at its Ivy League medical school. When my PSA began to rise two years after surgery, he advised me that it was time to move on to a medical oncologist. He offered any help that I might need making the transition. I have always admired him for distinguishing between his role and that of a medical oncologist.

    Not all medical oncologists are a good choice for PCa patients. Try to find one that specializes in PCa even if it involves considerable travel on your part. You will most likely be managing this disease for a long period of time. The right doctor can make a big difference.

    Vasco - Oligometastic cancer
    Is it still possible to radiate again even after the 38 IMRT treatmens
    in 2010? I thought that you cannot radiate a second time.

    Thanks to all for your help.
  • mrspjd
    mrspjd Member Posts: 694 Member
    #6
    ncobjim said:

    Vasco - Oligometastic cancer
    Is it still possible to radiate again even after the 38 IMRT treatmens
    in 2010? I thought that you cannot radiate a second time.

    Thanks to all for your help.

    Hello again
    Jim,

    Hello again. Sorry to read of your current dilemma, especially after your posts in August/September 2011.

    I agree with 142--"now" since "yesterday" is no longer an option.  Please take time to study & research all imaging options FIRST as you carefully consider your next steps.  I believe this process will help prepare you for the most beneficial meeting with an experienced & knowledgeable medical oncologist who specializes in PCa.  You may find the following info helpful about advanced/newer imaging modalities available with regard to identifying tumor sites in the context of recurrence with rising PSA--in particular, the C-11 Choline PET/CT:
    http://csn.cancer.org/node/245110#comment-1269039

    Re your question "Is it still possible to radiate again even after the 38 IMRT treatments"--Yes, depending on location/identification/extent (bone and soft tissue) of new tumor site(s) & the expertise of the RO and dosimetrist.  Best of luck. 
  • caseyh
    caseyh Member Posts: 63
    #7
    ncobjim said:

    Vasco - Oligometastic cancer
    Is it still possible to radiate again even after the 38 IMRT treatmens
    in 2010? I thought that you cannot radiate a second time.

    Thanks to all for your help.

    Additional radiation considerations
    Generally they will not radiate the same area twice. The need to do so is extremely rare. Your problem is likely not due to radiation failure, but more likely due to disease being in an area not radiated. Most of the time, PCa spreads to lymph nodes first. I know people who had unsuccessful salvage radiation followed by the USPIO scan that VG mentioned who are in remission for 5 years. The USPIO will spot and illuminate PCa in your lymph nodes from your neck to your toes. CT & Pet scans are also done as part of the workup. The contrast agent is used off-label and not covered by insurance (approx. $1500). The rest of the costs are generally covered by private insurance companies and Medicare.

    This test is only done at Sand Lake Imaging in Orlando and only by referral from Dr. Charles Myers, Earlysville, VA, or The Datolli Cancer, Sarasota, FL. You can contact either using their websites. Datolli does the treatment and it is another 6 to 8 weeks. You might be able to get it done elsewhere but I would not advise that. Interpreting the scans and transferring the data to a treatment plan requires considerable experience.
  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #8
    caseyh said:

    Additional radiation considerations
    Generally they will not radiate the same area twice. The need to do so is extremely rare. Your problem is likely not due to radiation failure, but more likely due to disease being in an area not radiated. Most of the time, PCa spreads to lymph nodes first. I know people who had unsuccessful salvage radiation followed by the USPIO scan that VG mentioned who are in remission for 5 years. The USPIO will spot and illuminate PCa in your lymph nodes from your neck to your toes. CT & Pet scans are also done as part of the workup. The contrast agent is used off-label and not covered by insurance (approx. $1500). The rest of the costs are generally covered by private insurance companies and Medicare.

    This test is only done at Sand Lake Imaging in Orlando and only by referral from Dr. Charles Myers, Earlysville, VA, or The Datolli Cancer, Sarasota, FL. You can contact either using their websites. Datolli does the treatment and it is another 6 to 8 weeks. You might be able to get it done elsewhere but I would not advise that. Interpreting the scans and transferring the data to a treatment plan requires considerable experience.

    Less than 5 spots
    Jim

    Radiation on top of radiation is not advisable. In soft tissue (low density) such procedure could open a “hole” (fistula).
    However, spot radiation aims at a particular place not at an area so that it may be possible to radiate if such place has been subjected only to low intensity irradiation (such as the one applied with the wide beam in salvage treatments). We all got a limit of absorption of energy and cannot go over that.
    Somehow, radiologists manage to get into those spots with careful isodose planning basing their calculations on the details of previous administered radiation, but I read that they only radiate few number of less than 5 spots.
    I would recommend you to get advice on the matter from specialists on the treatment of oligometastatic cancer if decide to give it a try.

    In any case the oligometastatic cancer could be set at far places in the body that have not been radiated yet. Moreover, if the tumour is found at places where “removal” by surgery is possible then one can chose how to treat the spot.

    Finding those spots is the important aspect of the treatment. Feraheme agent works well in soft tissue particularly at the lymph nodes but PET/MRI 18F (choline) or Naf (18) are better to locate cancer in bone. Still better seems to be the C11 Acetate which contrast agent is highly sensitivity, but got only a 20 minute half-life, so the place where to have the test requires a cyclotron in the same building.

    You should read about the newer scans (image studies) to get better understanding on possibilities. One aspect to consider is that small tumours may not be seen by these superior machines (3-tesla, etc) if the size is lower than 2mm. Cancer producing low levels of PSA may also be of small size which could signal false negatives.

    Here is a compendium on radiation and its therapy;
    http://www.cancer.gov/cancertopics/factsheet/Therapy/radiation

    Wishing you the best.

    VGama
  • ncobjim
    ncobjim Member Posts: 37
    #9
    VascodaGama said:

    Less than 5 spots
    Jim

    Radiation on top of radiation is not advisable. In soft tissue (low density) such procedure could open a “hole” (fistula).
    However, spot radiation aims at a particular place not at an area so that it may be possible to radiate if such place has been subjected only to low intensity irradiation (such as the one applied with the wide beam in salvage treatments). We all got a limit of absorption of energy and cannot go over that.
    Somehow, radiologists manage to get into those spots with careful isodose planning basing their calculations on the details of previous administered radiation, but I read that they only radiate few number of less than 5 spots.
    I would recommend you to get advice on the matter from specialists on the treatment of oligometastatic cancer if decide to give it a try.

    In any case the oligometastatic cancer could be set at far places in the body that have not been radiated yet. Moreover, if the tumour is found at places where “removal” by surgery is possible then one can chose how to treat the spot.

    Finding those spots is the important aspect of the treatment. Feraheme agent works well in soft tissue particularly at the lymph nodes but PET/MRI 18F (choline) or Naf (18) are better to locate cancer in bone. Still better seems to be the C11 Acetate which contrast agent is highly sensitivity, but got only a 20 minute half-life, so the place where to have the test requires a cyclotron in the same building.

    You should read about the newer scans (image studies) to get better understanding on possibilities. One aspect to consider is that small tumours may not be seen by these superior machines (3-tesla, etc) if the size is lower than 2mm. Cancer producing low levels of PSA may also be of small size which could signal false negatives.

    Here is a compendium on radiation and its therapy;
    http://www.cancer.gov/cancertopics/factsheet/Therapy/radiation

    Wishing you the best.

    VGama

    Thank you all for your help
    I want to thank everyone for all the helpful information. I have watched videos from
    Dr. Myers and looked at the advised web sites. A lot to digest. I will have to go over
    several times to absorb all of it. I have made an appointment with who think is a top doc
    medical oncologist at the University of Penna. in two weeks. Have a lot to discuss with
    her.
  • simanrai
    simanrai Member Posts: 1
    #10
    It will be true that
    It will be true that Volunteers are trained to give support and up-to-date information, including literature for spouses, children, friends, and other loved ones...........
  • ncobjim
    ncobjim Member Posts: 37
    #11
    simanrai said:

    It will be true that
    It will be true that Volunteers are trained to give support and up-to-date information, including literature for spouses, children, friends, and other loved ones...........

    Medical Oncologist

    Have seen 2 top Medical Oncologists. Both had the same opinion. Wait for a while. Had new Cat & full  body bone scans done. Both were negative-showed nothing. The M/O i decided to go with is having me get another PSA test done in late April with my R/O on a scheduled visit. If it goes way up -like doubles i am to give her a call. If it does not go up much we will continue on to the next one.

    The waiting game continues!!!!!!! Still room for hope i guess.

  • Samsungtech1
    Samsungtech1 Member Posts: 351
    #12
    Time

    IMHO your urologist should have passed you off to an Oncologist after your surgery.  After surgery there is nothing for a urologist to do but collect money for your PSA tests.  Easy money even if it kills you.  I am not an expert on any of this, but I believe Urologists should refer everyone to an Onc as soon as surgery has ended.  Mine did not do this and he also did not believe in Agent Orange.  He ignored the nodule in lung from beginning.  I had to go to emergency room and ask for an x-ray.  More nodules had shown up and after a CT scan showed this I ended up with a really great Onc. 

    Once you have surgery or any other treatment urologists should step aside and pass you off to an Oncologist.  Money is the only reason why Urologists do not do this.  My own opinion.

    Mike

  • ralph.townsend1
    ralph.townsend1 Member Posts: 359 Member
    #13
    Samsungtech1 said:

    Time

    IMHO your urologist should have passed you off to an Oncologist after your surgery.  After surgery there is nothing for a urologist to do but collect money for your PSA tests.  Easy money even if it kills you.  I am not an expert on any of this, but I believe Urologists should refer everyone to an Onc as soon as surgery has ended.  Mine did not do this and he also did not believe in Agent Orange.  He ignored the nodule in lung from beginning.  I had to go to emergency room and ask for an x-ray.  More nodules had shown up and after a CT scan showed this I ended up with a really great Onc. 

    Once you have surgery or any other treatment urologists should step aside and pass you off to an Oncologist.  Money is the only reason why Urologists do not do this.  My own opinion.

    Mike

    Our past

    My urologist or Oncologist did not believe in the Agent orange thing until they started looking into it. The guy's at MDACC connected the dots.

    About the money they are all in it. As you said " MIKE " Easy money even if it kills you! Every time I get my Lupron shot, the urologist see me to charge to my insurance.

  • VascodaGama
    VascodaGama Member Posts: 3,701 Member
    #14
    ralph.townsend1 said:

    Our past

    My urologist or Oncologist did not believe in the Agent orange thing until they started looking into it. The guy's at MDACC connected the dots.

    About the money they are all in it. As you said " MIKE " Easy money even if it kills you! Every time I get my Lupron shot, the urologist see me to charge to my insurance.

    The waiting game

    Jim

    I do not know in which way you are terming “hope” but in the PCa “world” we learn in keep it close to us.

    I think it a good idea of waiting for the PSA of April. Should it be higher it will give the peace of mind you are looking for, a conclusion. You will know that recurrence is set and that you need to start a treatment to control the advance.

    The typical sequential in cases like yours (and mine) is the hormone therapy. That will knock the cancer into submission. You can always look for other means in treatments, including the possibility of an attack with focal radiation therapy (external or delivered through the bloodstream. e.i. Alpharadin).

    Keep the hope but do not get loose. Do your investigations on ways of controlling systemic cancer and the treatment side effects.

     

    Wishing you the best.

    VGama  Wink

  • ncobjim
    ncobjim Member Posts: 37
    #15
    VascodaGama said:

    The waiting game

    Jim

    I do not know in which way you are terming “hope” but in the PCa “world” we learn in keep it close to us.

    I think it a good idea of waiting for the PSA of April. Should it be higher it will give the peace of mind you are looking for, a conclusion. You will know that recurrence is set and that you need to start a treatment to control the advance.

    The typical sequential in cases like yours (and mine) is the hormone therapy. That will knock the cancer into submission. You can always look for other means in treatments, including the possibility of an attack with focal radiation therapy (external or delivered through the bloodstream. e.i. Alpharadin).

    Keep the hope but do not get loose. Do your investigations on ways of controlling systemic cancer and the treatment side effects.

     

    Wishing you the best.

    VGama  Wink

    Hope

    VGama

    I think of hope as looking for a better out come at each step. I have kept a positive attitude since my PC journey started in 2006 and will continue to do so. I exercise a lot and am now trying to go with a mediterranean type diet to eliminate as much red meat as possible. Nobody's PC is the same but yours and mine seem to be somewhat of a similar path.

    Continued good luck to you

    Jim

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