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Need some advice-Update

ramaka
Posts: 55
Joined: Mar 2017

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.

 

VascodaGama's picture
VascodaGama
Posts: 3007
Joined: Nov 2010

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
Posts: 55
Joined: Mar 2017

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
Posts: 55
Joined: Mar 2017

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's picture
VascodaGama
Posts: 3007
Joined: Nov 2010

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
Posts: 55
Joined: Mar 2017

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?

Old Salt
Posts: 720
Joined: Aug 2014

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

hewhositsoncushions
Posts: 274
Joined: Mar 2017

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
Posts: 440
Joined: Mar 2017

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.

ramaka
Posts: 55
Joined: Mar 2017

Thank you again for your replies!

Rakendra's picture
Rakendra
Posts: 198
Joined: Apr 2013

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
Posts: 55
Joined: Mar 2017

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's picture
VascodaGama
Posts: 3007
Joined: Nov 2010

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
Posts: 55
Joined: Mar 2017

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
Posts: 55
Joined: Mar 2017

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.

VascodaGama's picture
VascodaGama
Posts: 3007
Joined: Nov 2010

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

ramaka
Posts: 55
Joined: Mar 2017

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's picture
Max Former Hodg...
Posts: 3292
Joined: May 2012

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
Posts: 55
Joined: Mar 2017

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's picture
VascodaGama
Posts: 3007
Joined: Nov 2010

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
Posts: 55
Joined: Mar 2017

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

ramaka
Posts: 55
Joined: Mar 2017

Hi VG and Max,

I asked the Dr again about RT and he clarified that he will be doing a PSA 6 weeks post surgery and then wait till the wond completely heals before going in for the 35 RT sessions. VG, I sincerely hope you come back and continue sharing your thoughts and knowledge and help all of us during these times!!

Thank you,

Avi.

ramaka
Posts: 55
Joined: Mar 2017

Hi All:

Just wanted to give a 1 month post surgery update-so far so good (touchwood!). My dad has been wearing a diaper at nights and says he can ccontrol the pee at least till the time he reaches the toilet during the day time. He had some lower back pain, which is gradually phasing out. There are a couple of drops of leakage each time he gets up or sits down but the Dr. said t is normal and should get better gradually. His Surgeon said that he will have to go for a PSA the first week of January and then based on the results will decide what the next steps are. Have a wonderful weekend!!

Thank you,

Avi.

VascodaGama's picture
VascodaGama
Posts: 3007
Joined: Nov 2010

Avi,

I am glad for the news. I hope the PSA result also adds good news into this joyful moment. Thanks for the update.

I would recommend your dad to get two additional tests before starting the radiation. Request to have the testosterone done (with the PSA) and a colonoscopy to check the colon conditions (colitis, diverticulitis).

Best,

VG

ramaka
Posts: 55
Joined: Mar 2017

Hi VG:

Thanks again. I will ask my dad to have those done when they test for his PSA in January.

Avi.

ramaka
Posts: 55
Joined: Mar 2017

Wishing each and every member and their family a Very Happy New Year! May this year bring much joy and happiness to everyone here! 

Just wanted to give an update w.r.t. my dad. He had Prostectomy in September and yesterday he went for his first PSA reading post surgery and it came back at 0.09ng/L. His Dr said he would wait and watch the next couple of months with monthly PSA tests and if the PSA is steadily below 0.2 then its just going to be monitoring hereon. If the PSA rises more than 0.2 then he advised another HT followed by RT. Hoping for the best for my dad! Thanks again for the read and all the valuable advice here!

VascodaGama's picture
VascodaGama
Posts: 3007
Joined: Nov 2010

Best wishes for a good year to you and family. The low PSA is good news. I hope it keeps that level but as you informed before, they found some lymph nodes invasion which do not assure a total success of the surgery at this time. His doctor is proceeding according to NCCN guidelines. I think it proper to check the PSA periodically (every 2 months for six month period) and start any salvage treatment if the PSA rises to 0.20 ng/m. The protocol of the combi therapy (hormonal plus radiation) is the typical way to cases of recurrence. Consider doing the tests I have suggested above.

Best,

VG

ramaka
Posts: 55
Joined: Mar 2017

Thanks again, VG. I will definitely ask my dad to hve his testostrone and colonoscopy done soon. Have a good rest of the week!

ramaka
Posts: 55
Joined: Mar 2017

Hi All:

My dad went for his second PSA reading post his surgery and it came back 0.1 (increase of 0.01 since his last month reading). He is yet to meet his Dr, butu thought of giving an update here. VG, he will get his testosterone as well as get a colonoscopy in the next few months for sure. Thanks again for all your help and read!

Avi.

Lucys26
Posts: 7
Joined: Jan 2018

I am very sorry about your situation. My Dad's condition is almost exactly like your father's. He has had a catheter in for close to two years and underwent radiation therapy for his prostate cancer. The doctor had wanted to do a Turp surgery as well and they had discussed the tube through his stomach, but unfortunately due to his heart, they couldn't go through with either. In regards to your question, I couldn't tell you about the outcome of either of those surgeries, but I know that after radiation your dad should have someone with him. Mine is still bedridden do to his pain and can only walk around for a short amount of time. It helps to have someone there to be able to cook and bring him food. My father also had the dizziness and because of this was unable to drive so it helped to have someone there to bring him to his hospital appointments. I hope everything works out.

VascodaGama's picture
VascodaGama
Posts: 3007
Joined: Nov 2010

I think that the lab this time used a different assay for the PSA test. PSA=0.1 could be a roundup of the last value of 0.09. The increase of 0.01 could refer to instruments' noise too. I recommend your dad for doing the test using the same laboratory with supersensitive assays of two decimal digits (PSA= 0.XX ng/ml), because he has no prostate gland in place. Tiny values got meanings if produced in similar assays.

Congratulations for continued low levels.

VG

ramaka
Posts: 55
Joined: Mar 2017

Hi All:

Quick update on my dad, 3 weeks back he developed some kind of infection in the stomach and had a big mass protruding in the area. The Dr gave him some medicine and the mass slowly turned liquid and they did a key hole surgery, put a pipe to drain the puss. Out of no where he complained about pain in his left arm and was rushed to ER where they said he had a mild heart attack. Due to the draining still in the stomach, the Dr are taking it slow treating him. I am heading back to India to be with my parents. Hoping this passes and Dad feels better soon. Wising you all a happy and speedy recovery!

Thank you,

Avi.

ramaka
Posts: 55
Joined: Mar 2017

Hi All:

My dad developed Lymphocele and had a drain put in. At the same time, he suffered a heart attack. Angiogram was not doone immediately due to the presence of drain in his stomach. Urologists and Cardiologists consulted with ach other and deemed that they could proceed with the angiogram. Angiogram showed blockage but not that extensive that he has to undergo angioplasty. He has been given some blood thiners and being monitored every month from now on, They did an ultrasound prior to removing the drainage and found another accuualtion to the righ of the original one. So they stitched up the old one and put in a new one. Unfortunately, the new one go blocked and hence he has to have the drain for a few more days. I sincerely hope this is the last of the Lymphocele occurance as he seems completely drained out physically. Me being away from theem does not help either. Please share your experiences if you had lymphocele post RP. Thanks again, Avi.

ramaka
Posts: 55
Joined: Mar 2017

Hi:

Dad finally got the drain pipe removed from the abdomen due to Lymphocelle a couple of weeks back and so far so good (touch wood!). He went in for his PSA check and it came back 1.3 ng/dl (it was 0.1 back in March 2018). I am really worried that the PCa is back....Can any one please let me know your thoughts? He is meeting with his Dr tomorrow, but I am worried sick here...

Thanka again!

Clevelandguy
Posts: 455
Joined: Jun 2015

Hi,

When he goes back for is next PSA test if it does rise again sounds like something is going on.  He would probably need an MRI to determine if the cancer is growing and where it is.  From what I read it sounds like your Dad is heading for RT as soon as he heals up.  The imaging test(MRI) should provide them with the places to apply the radiation.  Unfortunetly the radiation will throw more side effects into the mix for you father.  God speed man, sound like your father is having a rough time of it.

Dave 3+4

ramaka
Posts: 55
Joined: Mar 2017

Thank you very much for your time and help, Dave! Will keep you posted on the progress of my father.

ramaka
Posts: 55
Joined: Mar 2017

My dad meet his Dr today and he was told that they will start him on Firmagon asap. He will have a scan next week. After 2 months post HT, he will undergo 2 months/35 sessions of Radiation therapy. Does this steps increase in psa so soon after the surgery mean that the surgery was of no use?

ramaka
Posts: 55
Joined: Mar 2017

Hello:

My dad went in for his PSA post 1.5 months since his HT and it came back as 0.5. He is meeting his Dr on Monday and hopefully we will know what the next steps are. Most likely go ahead with RT ASAP. Thanks again for the read and keep you updated.

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