New Diagnosis - Our story

[Pinks]

Hope everyone is doing well and having a good day. I live in US and my dad lives in India. I have been doing a lot of research for my dad who is currently being diagnosed. I am glad that I found this forum to help, guidance and support during this journey. My dad is 65 years old. He is a pretty active guy although he has diabetics. He used to walk every single day for 5/6 miles until this back pain started. He doesn't drink, smoke, eats pretty well. He loves to travel. 

 

My dad was having back pain for the past couple of days. Usually, whenever he gets back pain, it goes away in 2/3 days. But this time it went on for a few weeks. MRI results were showing mass growth, close to spine, touching bladder, a few lymph nodes were swollen but it has not gone to spine or bones yet is what we could tell from the MRI. MRI said locally advanced prostate cancer, metastatic, grade 2. Then we took the report to an Oncologist, who asked us to do a biopsies and a few blood test for PSA and CEA results. PSA came out to be at 64. CEA blood work was not bad. He went through the TRUS biopsies (they only did 6 core). And we are currently waiting for the results. Another neurologist suggested we will do a bone scan after the biopsies. And go from there. So as I see, diagnosis is ongoing and more tests to come. The problem right now is that he is having back pain and not able to sleep. We are giving him sleep medication as recommended by the neurologist.

 

In the mean time, I am trying to educate myself so that we can take a good decision on his treatment plan. I am reaching out to doctors in USA or anywhere for second opinions. Treatment in US without insurance would be very expensive, I am trying to find out the costs. 

 

Please feel free to offer any guidance and help that you could provide based on your experience, knowledge in this matter. I would appreciate that. I am hopeful and keeping a positive attitude. 

 

Thanks,

Pinks

 

 

[alanbarlee]

Hi Pinks,

 

First, congratulations on your commitment to help your dad in his hour of need, and in recognising the importance of getting educated about this disease.

 

The MRI that was done was presumably a traditional whole body scan - which is certainly useful, but not as definitive as a '3T mp' MRI that looks hard at what's happening within the prostate. Other imaging might include a PET/CT scan if available (ideally 68-Ga-PSMA, but otherwise consider 18-FGR), which picks up unwanted metabolic activity within apparent tumours and lymph nodes. You also mention an upcoming bone scan (99-technetium), which, given the fairly high PSA of 64,  may pick up bone tumours, which are common with metastatic prostate cancer. (It's good that the neurologist at least was seeking more data than simply the initial MRI result). Keep in mind that not all of the systemic cancer will be visible on scans.

 

The finding of apparent tumours ('mass growth and swollen lymph glands') at a distance from the gland and likely causing the back pain tends to justify the oncologist's opinion of metastatic disease (which is defined as Stage 4 - where the task is essentially to slow down rather than to cure the disease). Hopefully an experienced pathologist will have characterised the biopsy as prostate cancer The Gleason score and the percent of cancer in the biopsy cores, and PSA doubling time from successive tests, . are key data that you need from the pathology reports (which you should get a copy of, along with scan reports). This data together will tell you a lot about the grade, and will guide the oncologist on how aggressive the treatment  should be. The golden rule is that the data dictates the strategy!

 

There is a range of options that might be proposed, including radiation therapy (ideally IMRT) and/or brachytherapy, both of which would be aimed at debulking the primary cancer site - the prostate. Keep in mind that targeted radiation therapy can also be very useful in palliating painful metastases. You would get advice on these possibilities by getting an early referral to a radiation oncologist.

 

Early ADT (androgen deprivation therapy) to deal with the systemic cancer is likely to be needed. Don't be alarmed if early chemotherapy (docetaxel) is suggested in conjunction with ADT : this is rapidly becoming standard of care in cases like your dad's, especially if his grade is at the high end.

 

Beyond that are the newer second-line ADT treatments - abiraterone (Zytiga), enzalutamide (Xtandi) and the upcoming apalutamide (Erleada). These are all expensive but very effective treatments, although likely to be mutually exclusive.

 

Keep up your research and aim to develop an empowered  team approach with your dad's oncologist - there are many actions that the medicos have available in 2018!

 

Keep posting - and good luck!

 

Alan

 

 

 

   

[Charles (Chuck) Maack]

Hello, Pinks, where in India does your Dad reside?  I am only aware of one Urologist who it appears is quite conversant in the treatment of prostate cancer and am providing that herein.  Not sure if the url references are up-to-date but his contact info  in Mumbai is provided in the event your Dad would want to contact him for additional opinion.  Definitely a bone scan would be in order.  With already present metastasis, treatment options are more limited and India is not known to be a country with state-of-the-art expertise in the treatment of prostate cancer.  I would expect androgen (testosterone) deprivation treatment will be included in early consideration to reduce this primary fuel to prostate cancer growth and proliferation (dividing/multiplying).  One problem in India is that too often an orchiectomy (removal of the testicles where the primary source of testosterone is produced) is performed rather than medications that do the same in inhibiting the production of testosterone - probably because many do not have insurance or financial means to pay for medications, but if possible, I wouldn't recommend orchiectomy.  I would hope your Dad has some form of health insurance.  The "mass" as you describe it is certainly of concern.  Here in the U.S. one of the earlier treatment for advanced, metastasized prostate cancer is both androgen deprivation therapy accompanied by chemotherapy with docetaxel/Taxotere and possibly a carboplatin included to attack such mass development early on, then continue with androgen deprivation medications in the hope the cancer can be controlled/managed.  These treatments will not cure your Dad's prostate cancer but we can only pray that they will control it for as long as medically possible.  Contact physician:

 

MUMBAI, INDIA

Dr.Dilip Raja
Dr. Raja's Urology & Andrology Centre
404, Sagar Fortune,
184, Waterfield Road,
Bandra (W),
Mumbai 400 050, India.
Mobile(Mumbai): +91-98200 74649
Mobile(Dubai): +971 50 279 79 83
Tel.: +91-22-2645 2007
        +91-22-2645 2008
Fax.: + 91-22-2645 2007

Email:dr@vsnl.com /
drdilipraja@gmail.com
Website: www.dilipraja.com

Though Dr.Raja’s main facility is in Mumbai, India, it appears that he makes trips to provide treatment in Deira, Dubai at the Prime Healthcare Group LLC. 

Contact info to find out when he is available in Deira is here:

 

 http://www.primehealth.ae/contact_info.aspx and info about him here:

 http://tinyurl.com/jwjgqcm

 

More info I happen to have in my files:

APOLLO HOSPITAL ONCOLOGISTS IN CHENNAI

AND LIST OF ALL APOLLO HOSPITALS IN INDIA

All oncology physicians at Apollo Hospital in Chennai:

 

http://tinyurl.com/l6b5w76

All Apollo Hospitals in India:

http://www.apollohospitals.com/hospitals-in-india.php

 

LIST OF HOSPITALS GENERAL AREA OF PUNE, INDIA

http://yellowpages.sulekha.com/medical-oncologists_pune_contacts

 

Two Medical Oncologists in Pune

http://www.doctorscabin.com/12298-DrShailendraDate

http://www.rubyhallcancercentre.com/htmlsite/Medical_Oncology.asp?id=28

 

Listing of Oncologists in Pune

http://www.indiacom.com/yellow-pages/doctors-cancer-oncologists-/Pune/

 

My prayers accompanying yours for your Dad.

[Bruce Kynaston]

Pinks,

I am a very much retired radiation oncologist and would, if with your Dad, I would gently tap down his vertebral column to ascertain whether he has slight tenderness anywhere, as I would regard such as suspicious.

That is my short message.

Best wishes for you both.

Bruce.

[Colin Glover]

What wonderfully detailed empathetic responses. We are so lucky to have such people in the forum. For your interest and reassurance I'm 78  my psa had shot up to 34 after staying around 18 - 22 for some 3 years. I went on to ADT (Lucrin) a bit over a year ago and within in 2 weeks the psa was 10 and has been decreasing ever since to 3.6 with little side effects.

 

Hope you can find a satisfactory solution.

Colin

[Pinks]

Thank you so much. I feel really blessed to find this forum. A lot of helpful information for us which I am going to convey them to my dad for now. My sister and BIL are doctor and surgeon, they have been helping my dad with this very closely as they are in India. I am sure they will find this information valuable as it’s coming from experienced and knowledgeable people here. 

 

I will keep posting with all the details as I learn for help and your support. 

 

Thank you so much. 

Pinks

[Pinks]

Adding more details - Seems like Gleason score is 9 on a 6 core biopsies. They are meeting with a medical oncologist to discuss treatment plan. They will do bone scan and CT scan (not sure). 

I will update further as I learn more.

 

Is there any Australian hospital or doctor willing to do a second opinion over phone? I have reached out to a few hospital in US to have his results reviewed. I will call each of them today. 

 

 

 

[alanbarlee]

Hi again,

 

Any info on your dad's PSA doubling time (from the last 2-3 tests)? That's another key piece of data, along with the Gleason 9, last PSA of 64 and the suspicious CT scan. Your dad may or may not have bone mets - the scan may well add to the evidence of metastatic disease.

 

The picture so far strongly suggests that aggressive treatment is likely (see my previous post). There are some excellent oncologists and teaching hospitals in the US specialising in prostate cancer - and a lot of promising clinical trials happening there. Hopefully your enquiries will be productive.

 

Best wishes,

 

Alan

 

[Pinks]

Thanks Alan. I don’t think they have don’t any more blood test as yet. The blood test was done last week for the first time to check his PSA. May be they will do it again (?). So we are not sure about the doubling time. But I’ll will let him know to get that details. Thanks again. I’ll keep updating. 

[Pinks]

The oncologist reviewed the biopsies, blood test and MRI and has adviced to go with the surgery (orchioctomy, TURP). That will cut down the hormone right away is what I understand and it will have a significant impact on the cancer. We are okay with surgery based on what we have learnt so far. They want to do PET scan which will be done this week. More to come.. 

[Charles (Chuck) Maack]

Hello again, Pinks. 

Regarding the planned orchiectomy:

 

Be aware that this surgical procedure does NOT stop all production of testosterone as explained in the below paper:

http://www.theprostateadvocate.com/pdf/ORCHIECTOMY.pdf

 

What is NOT stopped with an orchiectomy is that androgen/testosterone produced by the adrenal glands in which the orchiectomy has no affect.  With that being the case it then becomes important to have testing for your Dad’s ‘fasting’ Prolactin level. “Prolactin hormone is an additional growth factor to the prostate gland, and rising prolactin levels correlate with progression in advanced prostate cancer cases. Prolactin receptors are found on prostate cancer cells, and it is postulated that these receptors may facilitate the entry of testosterone into the cell. Even with hormone ablation therapy (or orchiectomy), detectable androgen remains in the blood from adrenal sources. Blocking prolactin secretion may therefore be another method for slowing progression of the disease. It is recommended that prolactin levels be kept below 3 in all patients with hormone-responsive cancers.”  Please read this reasoning and how to treat a high level of Prolactin in this paper:

http://www.theprostateadvocate.com/pdf/PROLACTIN LEVEL.pdf

 

I know this must be difficult for you relaying advice to your Dad.  You might look into if you can get the email address of the physician treating your Dad so that you could forward directly to both your Dad and his treating physician those suggestions you receive on this forum that appear reasonable for your Dad's treating physician to consider.  With references such as that provided in this post, the physician has the suggestion better explained as to the reasoning for the suggestion.

 

[Charles (Chuck) Maack]

A question I have had since your first report of your Dad's Gleason Score of 9 from 6 biopsy samples.  Did every one of the six tissue samples extracted during biopsy show evidence of Gleason 9, or were some of the six showing different/lower Gleason Scores?  Reason, all six tissue samples with Gleason 9 of much more concern, wherein if only one tissue sample shows Gleason 9 and others at least somewhat lower, still of concern but providing at least some hope to be able to control and manage his prostate cancer.

[Pinks]

Thanks for your response Chuck.

 

All 6 are Gleason 9, grade 5. Right side has the proportion of tissue involved is 80-100 % and left side (40-70%). Grade 5, Acinar Adenocarinoma. 

 

From the MRI (1.5 T), Liver, kidney and bladder other organs looked fine. But it was noted as Metastasis (Locally advanced PC). Lymph nodes were swollen. My understanding is that the tumor or mass was pushing it against the spine and bladder (?). There could be Bone involvement in there but I am not sure. This Thursday they have the PSMA PET scan. That will again be reviewed by the Onco before they make that final decision. Also for back pain as it was severe, he was given fungal medication (Ketoconazole) with prednisone (20 MG) temporarily. It helped him right away with the pain and now they are tapering it down for the possible surgery. He has some minor swelling on his feet but that could be from sitting in the car for long hours a few days ago or could be a side effect too. But it gave him a relief from the back pain and he was able to sleep at night. 

 

I will update after the scan ...I will convey the information to my sister and BIL, they can pass it on to the Onco doctor. 

 

 

 

[Pinks]

Hope all is well with everyone. And thanks for the helpful guidance I am being given here. I really appreciate it.  

 

I would like to update the current progress on my dad's diagnosis. The PET scan shows many bone mets. I was told that all the organs are good and not impacted. The doctor is still suggesting to move forward with bilateral (?) Orchiectomy and then possible radiation/other options. But he is confident to cut the hormone as soon as possible. I did mention the prolactin levels and they will control that through medicines and regular check ups etc. What I was told is there are different options but first thing is to get the hormone cut off asap through the surgery. He has referred us to a urologist now, and we are gonna meet him next to find out more about the surgery and when can that be done. That is where we stand right now. 

[Charles (Chuck) Maack]

The Urologist/surgeon will provide the orchiectomy, but then your Dad should come under the supervision of a Medical Oncologist for subsequent medications.  Radiation is pretty much out of the question since where do you radiate (other than possibly targeted radiation to the specific "mass" that has been noted).  In addition to the orchiectomy your Dad's adrenal gland produced androgen (testosterone) needs to be blocked from access to the multitude of "androgen receptors" present on cancer cells and that can be done by prescribing the generic of the antiandrogen Casodex (in the U.S. that is bicalutamide).  I am a proponent of also including the 5-Alpha Reductase/5AR inhibitor dutasteride/Avodart since when any androgen/testosterone has made its way to the cancer cells it is converted by 5AR to dihydrotestosterone/DHT which is five or more times more powerful a stimulant to cancer cell growth and proliferation (dividing/multiplying) - dutasteride/Avodart inhibits that conversion.  What might even more be considered in addition to the orchiectomy and these androgen/testosterone reducing medications is early chemotherapy followed by a return of these medications.  Here in the U.S. androgen/testosterone deprivation accompanied by chemotherapy with docetaxel/Taxotere, and possibly accompanied by carboplatin to synergize the effect of docetaxel has become a recommended initial protocol with men diagnosed with advanced/high grade prostate cancer.  The medications mentioned should be available at significantly reduced expense there in India since India is known as the manufacturer for many of these drugs subequently sold in the United States at higher cost.  

[Charles (Chuck) Maack]

I meant to add, likely the best place in India to seek most all medications prescribed in the treatment of Prostate Cancer is All Day Chemist, www.alldaychemist.com.

 

Drugs from India are more than likely equal to those sold in the U.S. – primarily because those sold in the U.S.- and probably the U.K. - are more than likely out-sourced for manufacture in India as well as other countries.  

 

From my understanding, the government of India has decreed that as long as a drug is produced in the generic form of an otherwise trademarked brand name, and the ingredients are equal to but not precisely identical in all forms to the brand name drug, they are authorized by that government to be manufactured for their own pharmaceutical use.  The foregoing remark and the following interesting comment were in a paper no longer available on the internet, but pretty much explains:

 

“However, the major firms say their plants, like the one owned by the Bombay-based Cipla Company, are more than safe. Many, in fact, are inspected by the U.S. Food and Drug Administration, since Indian companies export billions of dollars each year in generic drugs to the American market.”

[Pinks]

Thanks so much Chuck. Appreciate your help. I learnt today that they met with the urologist and he is going to do orchiectomy and turp (channelization). It seems like he won’t remove the prostate as it is attached to bladder etc. 

 

Seems like Orchiectomy is become critical to be done right away. They are doing it tomorrow. He did suggest some other latest drugs and possible chemo as well. I am yet to get the full details on it but we are thinking to get the surgery done first as everyone has agreed on that. Then we we will decide on the drugs,  chemo and radiations as needed. 

 

At this point, the hormones need to be shut off. Are there other options at this point? I think we don’t want to delay any further as it has spread to bones and lymph nodes. That’s why the urologist and Oncologist suggested to get it done right away. 

[Pinks]

Orchiectomy was done successfully today. They could not do the turp (channalization) because of the fear of rupture. The mass is spread there. They put a catherer (?) for now. His urine flow was blocked by something else, so the urologist cleared that up. 

 

Next - PSA check up in 14 days. 

Next steps on medicines and chemo etc - To be discussed further. Research on the drugs. 

 

Sorry if it’s too much information. But I am atleast happy that treatment got started after 1 month of diagnosis. It’s been a crazy day. ?

[Charles (Chuck) Maack]

Hello again, Pinks (where did that name come from?).  You can never give too much information, so no apologies needed.  If anything, we are provided too little information making it difficult to determine how to reply since it is important to hopefully get as much of "all the information" as possible.  You have been doing that quite well considering you are in the USA and your Dad is in India!  Fortunate for sure is you have a brother and sister there in India; are they in the same location as your Dad - and by the way, where does your Dad reside?  Have they supported the information you have provided them suggested by we on this forum?  Was not aware that your Dad was experiencing urine flow problems so good to hear he has a catheter for now to release the urine flow from the bladder; not a comfortable situation!  Since you mention "the urologist has cleared that up" we would hope once decided the catheter can be removed his urine flow will not be impeded by any blockage.  By the way, where in the U.S. do you reside?  I live in Wichita, Kansas.  Please review www.theprostateadvocate.com. 

[Pinks]

Hi Chuck, 

 

My nick name is Pinky.  Thanks for being so understanding. I am very thankful to get all the information and guidance here. I have sent the links to my sister, I think she checks time to time as well. These are very helpful information. At least we can ask questions to the doctors on the treatment plan. I got a crash course on this right away although still so much to learn.

Definitely fortunate that my sister and BIL are in India and they are taking care of everything. Thankful to them. They all live in Orissa. I live in MN. Its getting cold here! Thank you for the link. I will take a look. 

[Charles (Chuck) Maack]

Thank you for the "location" information.  Found this as to Medical Oncology in Orissa: https://www.hospitalkhoj.com/hospitals/cancer/orissa - I had provided you info as regards Mumbai, but that is over 800 miles from Orissa.  I have a nephew who was nick-named Pinky during his youth; actual name John, and that is what he goes by now.  I don't know "your" age, but if 35 or over, make sure you have annual of at least both PSA and DRE checks so that if - because of family history - you should end up with prostate cancer cell development, it is caught early enough to eradicate it.  Keep in touch.

[Pinks]

Thanks so much Chuck. You are so wonderful in proving me the details. Appreciate it.  

 

Mumbai is far from our place. But we will travel if needed. Bhubaneswar is the big city in Orissa where there are many doctors and hospitals. The urologist who did my dad's surgery seems to be pretty up to date. He is treating lot of PCa patients as well. We do have a good Oncologist whom we will meet again. BTW, I am a woman and I live with my husband in MN. Been in states for a very long time and we are settled here. 

 

Here is an update on my dad - He is feeling better post surgery. No pains. They have given him few antibiotics and bicalutamide (Casodex). Next follow up in 12 days. Hoping for the best. He is a wonderful dad. 

 

In the mean time, I am trying to get at appointment at Mayo clinic for review and 2nd opinion. I hope they will meet us without my dad being here right now. Working on creating a full report on his diagnosis and medications etc. 

 

 

 

 

[Charles (Chuck) Maack]

Hah! Pinky, you had me fooled all this time in thinking I was exchanging information with a man!  Good for you in taking up the challenge to help your Dad despite the distance between you.  During my 22 years as a mentor to prostate cancer patients and their caregivers, I have worked with a multitude of women who were the caregivers and researchers on behalf of their spouses, fathers, brothers; I commend all of you and have found you are not only diligent, you have become very well informed in your pursuit of knowledge and understanding to help your loved ones!  

 

You are proceeding on a good move to see if a Medical Oncologist at Mayo Clinic in Rochester, MN will be so kind as to review your Dad's diagnostics and treatments administered to date and hopefully offer suggestions to enhance his treatment in helping to control and manage his prostate cancer.  

 

My email address is maack1@cox.net

 

[Pinks]

Thanks again Chuck. I will save your email address. I would like to thank you for providing guidance and support to people like me and others. 

I have not reached out to Mayo yet. I heard Dr Kwon (?) is pretty good doctor here. I hope we could get in touch with him. Will do that next week. 

 

At this point we are still thinking whether to go for chemo or not. More to be discussed with Oncologist next week. I will further update soon.       Take care. 

[Charles (Chuck) Maack]

Dear Pinks,

 

I suggest you get an appointment (probably will be at your expense) with Dr. Manish Kohli at the Mayo Clinic in Rochester, MN.  Here is info regarding this Medical Oncologist wherein Prostate Cancer is among his specialties.  If/when making an appointment, and if you have the opportunity, explain that you are seeking the advice of Dr. Kohli regarding your father in Orissa, India who has been diagnosed with advanced, Gleason 9, prostate cancer, and it is paramount to have as early appointment with him as possible.  When you open the following, you can click on “Request an Appointment” in the upper right hand corner.

 

https://www.mayoclinic.org/biographies/kohli-manish-m-d/bio-20055166 

 

You could save the following for your visit with Dr. Kohli:

 

Dear Dr. Manish Kohli,

I have made this appointment with you regarding my father recently diagnosed with advanced, Gleason 9, prostate cancer and who lives in Orissa, India.  He just received an orchiectomy and has been prescribed bicalutamide pending further imaging results and determining what to do next; possibly chemotherapy. With this distance between us and my wanting to do all in my power to make sure the treatment protocol determined for him is reasonable, my hope was with a review of his diagnostics, biopsy results, and imaging to date, you would help me with your review and advice as to whether his current and planned treatment is considered by you as reasonable protocol for my father, or have other suggestions to pass on to my sister and brother-in-law in Orissa to discuss with my father’s treating physician.  With your review and suggestions in this matter, you would help set my concern at ease.