Need some advice-Update

ramaka
ramaka Member Posts: 55

Hi All:

I just wanted to drop in and give an update w.r.t. my dad's situation and I could not find my previous thread, so started a new one.

History:

Back in March my dad got diagonised with a Gleason Score 4+5=9 PCa. He has taken 2 doses of Degarelix and has been on catheter ever since. 

Update:

Two attempts to remove the catheter has been unsuccessful since he has a very tough time to pass urine while he is off catheter. So the Dr. will be doing a Cystoscopy and a TURP surgery next week and see if they can remove the blockage. He is saying that if everything goes well then my dad should be off catheter OR else he will be on catheter the rest of his life since the bladded might have failed (he said something about a pipe through his stomach or something like that). So hoping for the best as my dad hates being on catheter and not being able to go out as frequently as he used to. The only good thing about his HT is that the prostate size has reduced drastically (from 148grams to 51 grams), but he still has issues passing urine. Re: the future treatments to deal with PCa, he said he will give my dad another dose of Degarelix and then a month later will put my dad on Radiation Therapy. He basically ruled out surgery given that the cancer has spread out of Prostate. When asked about the Survival Rates, he said it is too early to comment on that and we will know based on how he reacts to Radiation Therapy. 

Questions:

I am leaving for India in a couple of days to be with them. I wanted to know if there are anything to watch out for during these 2 procedures and also, based on your experiences do you think my dad will need me when he undergoes radiation therapy? Kindly let me know if you can think of anything else that might be useful.

Have a good day!

Avi.

 

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Comments

  • VascodaGama
    VascodaGama Member Posts: 3,549 Member
    UPdate

    Hi Avi,

    Your previous post is here; https://csn.cancer.org/node/308410

    Congratulations regarding the improvements with Degarelix. I wonder if RT is proper after TURP. You need to get the opinion from a radiologist. TURP will provide relief in urination, but dissecting the whole gland could treat both, aiming the retention issue and the cancer as we discussed before. Adjuvant Radiation may be part of the therapy to cover the surrounding affected areas.

    Best wishes.

    VG

  • ramaka
    ramaka Member Posts: 55
    edited May 2017 #3
    Thank you, VG!

    Hi VG:

    Thank you again for your reply and hope you are doing well. A lot of information is being lost when I talk to my parents over the phone, maybe they are way too overwhelmed with what is happening OR my dad is just frustrated being "tied down" due to the catheter, so I decided to go and meet the Dr. personally and get all the details. I will definitely keep you all in the loop and wishing you and everyone on this forum only the best and as always thank you for your time and plethora of knowledge.

    Avi.

  • ramaka
    ramaka Member Posts: 55
    edited June 2017 #4
    Post Cystoscopy and TURP Update

    Hi All:

    My dad underwent Cystscopy that revealed that his bladder was in the initial stages of failure due to him being on catheter for 3 months and he underwent TURP where in the Dr/surgeon was able to remove most or all of the stuff that was blocking his urinary passage. He is 1 week post op and is not on catheter anymore and able to pass urine with no discomfort. He is thrilled that he is no longer on catheter and has the freedom to move around. He still has not regained bladder control, but it is not as bad that he has incontinence. He will be on HT for a month or so, will undergo another MRI/CT Scan and then the Dr. would recommend the next steps towards battling PCa. Thank you all for your time and help and wishing you and your families only the best.

  • VascodaGama
    VascodaGama Member Posts: 3,549 Member
    Period to recuperate

    Thanks for the update. He need now a period to recuperate before the image exams. I hope the PCa issue is looked well and that he chooses something that will not prejudice the outcome of the TURP. To much cutting at the area of the sphincter can lead to permanent incontinence.

    Best wishes and luck in his journey.

    VG 

  • ramaka
    ramaka Member Posts: 55
    1 month Post TURP Update

    Hi All:

    Just wanted to give an update on my dad's PCa post TURP-Dad is relieved and feeling good post TURP. He is able to pass urine without any pain and can now hold the urge, but not as well as before PCa. He had an MRI and they found that the prostate is hugging a part of rectum and so they cannot proceed with surgery. So has been given another medication (sorry forget the name!) and re do the MRI again after a month to see if the prosstate has let go of the rectum. If it has then they will go ahead with the surgery OR else they will start with radiation therapy. On the positive side, his PSA is 1.78 post 3 HT of Firmagon. As always thanks for the read and wishing everyone only the best!

    PS: Quick ?, sorry if this sounds a bit shallow, but since my dad has PCa, is it guaranteed that I too will have PCa (hereditary by nature)? Should I be proactive and what should I ask the Dr. during my next physical? I will be 40 in 6 months, so should I have a PSA done to act as a baseline for further down the line?

  • hewhositsoncushions
    hewhositsoncushions Member Posts: 409 Member
    Ramaka

    Ramaka

    A quick google suggests that their may be a hereditary link. I would suggest you get some medical advice and discuss when and how often you should start testing.

    C

  • Grinder
    Grinder Member Posts: 487 Member
    Probably

    As always, genetic traits can be passed on to the next generation, unless your mother's family history differs. Then it depends on the dominant trait. You could inherit your mother's side's prostatic history (that is, from the males in her family). But in this day and age, men should be closely monitoring their prostate health anyway.

  • Old Salt
    Old Salt Member Posts: 978 Member
    ramaka said:

    1 month Post TURP Update

    Hi All:

    Just wanted to give an update on my dad's PCa post TURP-Dad is relieved and feeling good post TURP. He is able to pass urine without any pain and can now hold the urge, but not as well as before PCa. He had an MRI and they found that the prostate is hugging a part of rectum and so they cannot proceed with surgery. So has been given another medication (sorry forget the name!) and re do the MRI again after a month to see if the prosstate has let go of the rectum. If it has then they will go ahead with the surgery OR else they will start with radiation therapy. On the positive side, his PSA is 1.78 post 3 HT of Firmagon. As always thanks for the read and wishing everyone only the best!

    PS: Quick ?, sorry if this sounds a bit shallow, but since my dad has PCa, is it guaranteed that I too will have PCa (hereditary by nature)? Should I be proactive and what should I ask the Dr. during my next physical? I will be 40 in 6 months, so should I have a PSA done to act as a baseline for further down the line?

    Yes

    Considering your background, you should have an annual PSA test to establish a base line and a Digital Rectal Exam as well.

  • ramaka
    ramaka Member Posts: 55
    edited July 2017 #10
    Thank you!

    Thank you again for your replies!

  • Rakendra
    Rakendra Member Posts: 197 Member
    Best of Luck

    Ramaka, best of luck to you and your father.  I always think that keeping a positive atitude and accepting "what is" is the best course.  Also, the fake food industry is toxic today, and diet plays a very important long term part in cancer, both in if you get it at all and in treatment.  Fasting and juice cleansing can be of help in prevention, not only  of cancer, but of many of the maladies of today.   I owe a lot to India, home of my Master, Osho, and the Osho Meditation Resort in Pune. Bon Voyage, Love, Swami Rakendra

  • ramaka
    ramaka Member Posts: 55
    Update-29AUG2017

    Hi All:

    Just wanted to give another update w.r.t. my dad's PCa journey. He is doing good post his TURP. He is scheduled for a "prostatectomy with bilateral extended pelvic lymphadeectomy +/- temporary colostomy" on 8SEP2017. This was suggested by his surgeon as the best route to battle his PCa. My dad seems to be completely leaning towards surgery and myself on the other hand, having read up on stuff here am not so sure, but will support him unconditionally on his decision.

    Thank you for your time and wishing only the best to you and your family!

    Avi. 

  • VascodaGama
    VascodaGama Member Posts: 3,549 Member
    ramaka said:

    Update-29AUG2017

    Hi All:

    Just wanted to give another update w.r.t. my dad's PCa journey. He is doing good post his TURP. He is scheduled for a "prostatectomy with bilateral extended pelvic lymphadeectomy +/- temporary colostomy" on 8SEP2017. This was suggested by his surgeon as the best route to battle his PCa. My dad seems to be completely leaning towards surgery and myself on the other hand, having read up on stuff here am not so sure, but will support him unconditionally on his decision.

    Thank you for your time and wishing only the best to you and your family!

    Avi. 

    what is the need for a colostomy?

    Surgery will not suppress the cancer totally but most of it. Your dad will need adjuvant radiation after heeling (a period over 4 months). His case is complicated for the prolonged urinary problem so that surgery may be his best shot. I wonder about the need of a colostomy. Are they cutting the collon?

    What have they found on the image studies that were not seen in the pet Scan?

    Regarding your previous inquire on your risks with pca, you have 4 folds higher risk than the common folk. My son also started his prevention at his 40 years old every two years. Now he had additional testing apart from the traditional PSA and free PSA.

    Good luck in your dad's surgery.

    VG

  • ramaka
    ramaka Member Posts: 55
    Thanks again, VG!

    Hi VG:

    Thanks again for your time and input. Duriing the scan (done a month ago) they found that the prostate is "hugging" a part of his colon, so they postponed the surgery by a month to see if it gets released. They did another scan after a month and the Dr. said it has improved slightly and he could go ahead with the surgery. If during the surgery he finds that the colon needs to be operated as well, he will or else he will let it be and just take the prostate out. 

    Avi.

  • ramaka
    ramaka Member Posts: 55
    RP and Biopsy Results.

    28SEP2017-Update:

    My Dad underwent Radical prostatectomy couple of weeks back. The Dr. told my parents that he was happy with the surgery and also the biopsy results. I could not get more info, since my parents did not ask him and they just sent me the biopsy/micoscopipc diagnosis and it is as below: 

    1.) 1 out of 19 right pelvic lymph nodes show metastatic carcinoma without extracapsular extension.

    2.) 3 out of 21 left pelvic lymph nodes show metastatic carcinoma without extracapsular extension.

    3.) Right anterior and right posterior portion of the prostate are involved by tumor with a tumor burden of 35% and 30% respectively.

    4.) Left anterior and Left posterior portion of the prostate are involved by tumor with a tumor burden of 35% and 20% respectively.

    5.) Base Margin-free of tumor

    6.) Apex margin-free of tumor

    7.) Extra prostatic soft tissue extendsion seen in right anterior, left anterior and left posterior portion of prostate.

    8.) The inked external surface is free of tumor.

    9.) Perineural tumor invasion and lymphovascular tumor emboli seen

    10.) Right seminal vesicle tissue free of tumor.

    11.) Pre-prostatic tissue and pre-rectal tissue are free of tumor.

     

    Could you kindly let me know your thoughts on the biopsy results? Also, the Dr said my dad has to undergo 35 session of radiation in the future to treat the lymph node carcinoma. 

    Thank you,

    Avi.

  • ramaka
    ramaka Member Posts: 55
    Hi VG:

    Hi VG:

    Thanks again for your time and reply. I am sorry that your replies are being censored here but I am glad that inspite of that you still provide your very helpdul advise. I hope things turn around and you are back at full swing.

    Thank you,

    Avi.

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,765 Member
    ramaka said:

    Hi VG:

    Hi VG:

    Thanks again for your time and reply. I am sorry that your replies are being censored here but I am glad that inspite of that you still provide your very helpdul advise. I hope things turn around and you are back at full swing.

    Thank you,

    Avi.

    Yes

    Ramaka,

    I agree exactly with VG regarding your dad.  The lymph node involvement and other factors prove he needs secondary treatment.

    Besides surgery, the only other curative form of PCa treatment is radiation.  They will give him time to heal first, but the sooner radiation is begun the better.  Insist upon it.

    max

  • ramaka
    ramaka Member Posts: 55
    Hi Max:

    Hi Max:

    Thanks for your input. I messaged the surgeon asking about the Lymph Node and his reply was he expected this pre-surgery and he has indeed suggested 35 radiation sessions for my dad once he recupreates and feels better (after 6 weeks is his plan). Have a wonderful weekend!

    Thank you,

    Avi.

  • VascodaGama
    VascodaGama Member Posts: 3,549 Member
    Considerations for the timing of the adjuvant therapy

    Unfortunately the info you share above is not good. The report on the findings of cancer at the lymph nodes which needs further treatment, classify your dad's pathological stage as pT3a pN1. The spread in the lymph nodes (only 4 out of 40) judges the disease as localized therefore the adjuvant therapy proposed by his doctor (35 session of RT), but the timing for this intervention and the field of attack should be carefully planned, in particular in regards to the numerous dissection of lymph nodes which may have impaired the area's lymphatic capabilities. Proper healing before any radiation in the area is recommendable. Your dad is risking lymphedema (fluid retention and swelling) placing your dad at high risk for serious abdominal infection. RT plus HT may be recommendable to your dad's situation, starting with HT. Discuss the matter with his doctor. I am sorry for the short reply but my comments put your thread in risk of being deleted.

    Best wishes,

    VG

  • VascodaGama
    VascodaGama Member Posts: 3,549 Member
    edited September 2017 #20
    6 weeks is too short a period for healing

    Sorry to intervene again in your decisions but in my opinion 6 weeks waiting post surgery is too short for proper healing. I would wait at least 4 months before intervention. Radiation done six months later would have the same effect of today and the cancer spread would not change in such a period of time. It is common practice at RT facilities of trying to fit the treatment in their machine's schedule disregarding what is best for the patient. Another fact regards the combination therapy using hormonal treatment to improve the benefits of the radiation, which, if decide to be done, it should allow a period of two month in Hormonal treatment prior to the administration of the radiation.

    I recommend you to research on the matter and discuss with his doctor regarding the above.

    VG

  • ramaka
    ramaka Member Posts: 55
    edited September 2017 #21
    Thanks again, VG!

    Thanks agian, VG! I will definitely ask this with my dad's Dr. Have a wonderful weekend everyone!