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Husband newly diagnosed- we are so scared

Heathhoff3
Posts: 7
Joined: Jan 2021

So our journey has begun.. my husband had PSA of 12.3 on physical this year that led us to the Urologist then to biopsy.. he is a T1c with Gleason 7 and has one area that was 4+3=7 so was told he is unfavorable intermediate. His prolaris was 4.5 so Dr said his cancer is acting like an 8 or 9. We have decided to have the prostate removed and the surgeon said he is also removing the lymph nodes. Now they want him to do a nuclear bone scan and MRI before surgery. Is that normal? He said there was a 5-10%chance of it spreading to the bone and elsewhere. He does not have any symptoms but was told that is normal also. 

Let me say my heart breaks for anyone with cancer or family members with cancer. I lost my dad to cancer and I do not want to lose my husband of 30 years to this horrible disease. My adult kids are scared, I'm scared but most of all my husband who is never afraid of anything is scared! 

Any advice? The surgeon said if anything comes back then our treatment plan has to change like hormone  therapy maybe radiation- then rescan and then sugery. Sound normal? We are new to this diagnosis and trying to absorb and read as much as I can but can get overwhelming so thought I would reach out to real patients/ family going through this experience. 

Thank you

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3659
Joined: May 2012

Heath,

The bone marrow scan prior to prostectomy is a good idea.  PCa in the bone marrow would prove metastasis, in which case most doctors would no longer recommend removal of the gland surgically, switching to radiation and hormonal therapy instead.

Be aware that prostate cancer (PCa) diagnosis is almost never an emergency, and is seldom a 'death sentence.'  Even advanced PCa is routinely controlled for many years, and on occasion, even decades.   Take your time and consult with the experts as necessary.

Heathhoff3
Posts: 7
Joined: Jan 2021

Thank you for the reassurance.. it is scary and I read that many men live a long time with even stage 4. I pray that we do not face that but God has a plan and we will hold on and keep researching and trying to stay positive.

Sw1218's picture
Sw1218
Posts: 65
Joined: Jan 2016

hello,

what i'd like to recommend to you are the following

1. get a second opinion. you would get this from john hopkins medical labs. call [410.614.6330] ask for ms. jackie. tell ms. jackie your husband has been diagnosed with prostate cancer and you'd like dr. epstein to provide you two with a second opinion. she [jackie] will provide you with the needed information to have that done. dr. epstein is a world renowned pathologists who analyses prostate cancer and will either confirm, downgrade or upgrade your hubby's cancer. if you live outside of maryland, your insurance won't cover the bill, but you won't be billed 'til sometimes later this year. good news is you will receive the 2nd opinion before you are billed. the bill may cost you $275, but it's WELL worth it

2. purchase a book titled "The Key to Prostate Cancer: 30 Experts Explain 15 Stages of Prostate Cancer". this book is writtened by dr. mark scholz. this book will help you understand EXACTLY what your husband is going through and ways to help you decide which path to take with respect to treatment.

3. learn as much as you can and don't be pressured into ANY type of treatment you're not either comfy with or don't know  enough about. ask plenty of questions, keep a record of everything and go on youtube and type PCRI. subscribe to the channel and watch those videos. there's a lot of info there that will help you understand your situation.

hopeful and opt...
Posts: 2328
Joined: Apr 2009

All of us when we are diagnosed go through all of those negative feelings. This usually lasts a few months. Sw1218 gave excellent advise. Have a second opinion on the pathology. Everything decision that you make is based on this. Dr Epstein is world class and is recognized as the best in the world. Please note that I live in California and my insurance picked up the tab. 

You are in no rush to make a decision but do things in a coordinated way. 

Prostate surgery is a localized treatment and if the cancer is outside the prostate it will not cure and additional treatment will be necessary. The side effects of multiple treatments are cummulattice. Surgery tends to have greater side effects than other treatments to include but not limited to erectile dysfunction and incontinance. 

Your doctor recommended image testing that may indicate  if there is extracapsular extension, that is if the cancer is outside the capsule. A T3 mri is the most definitive in clinical use. If so this would be a factor in determining treatment. 

There is a doctor called a radiation oncologist who treats with radiation. There are various radiation procedures. They all give similar results. Radiation can extent outside the capsule so cancers immediately outside the capsule can be treated. 

There is also hormone therapy can be given in conjunction with radiation that will improve the results in advanced cases. Your husbands case may or may not fall in that category. 

Surgeons generally recommend surgery and radiation oncologists recommended radiation, so if you want to have an unbiasked recommdation see a doctor that is called a medical oncologist. Some of these medical oncologists only specialize in prostate cancer. This is the one to see. 

Your husbands family members are more likely to develop prostate as well as breast cancer so men need to advise their gp's and the women need to get those mammograms. All need to eat heart healthy. Limit or no meat and dairy. 

lighterwood67's picture
lighterwood67
Posts: 294
Joined: Feb 2018

Well, you certainly have found an excellent site that will provide you with a lot of input.  The "Emperor of all Maladies", cancer, has been around a long long time.  After my biopsy of the prostate, I had a Gleason of 7.  My initial thought was "damn".  After that, started doing research on the beast.  I can't stress enough that the decision you make is your decision.  You and your husband need to become very knowledgeable on this cancer.  I tried to keep impact to quality of life in front of me.  I chose a Radical Prostatectomy (RP) as my treatment.  This is probably, the harder road to take due to the side effects, but it is what I chose.  My RP was done in 03/2018. At this time, my PSA is undetectable; I am pretty much continent (do not wear any depends, pads, etc.); I can be intimate.  I have posted before, my surgical report and post surgery biopsy report.  So, take a deep breadth, do your homework and make a decision.  Good luck on your journey.

Heathhoff3
Posts: 7
Joined: Jan 2021

My husband is a 7 as well. I would love to compare your report? So did you have the MRI and bone scan? Was yours only in the prostate? He is a Gleason of 3+4 with one atea of 4+3. His prolaris score was 4.5- He was a T1C. The surgeon said though that his cancer was aggressive and was acting like an 8 or 9. Scared the hell out of us. Glad to hear you are doing well- gives me hope. My husband wants to have removed also. We've been married 30 years. Who cares about pads or sexual problems. I want him here for 20 more years Ya know? Hell any woman in their 50s pee when they cough or sneeze...lol! Thank you again! I keep praying!

lighterwood67's picture
lighterwood67
Posts: 294
Joined: Feb 2018

Keep doing your homework.  This April, my wife and I will have been married for 50 years.  I had a 3T MRI prior to biopsy. This was a guided biopsy based on MRI results.  Below is my final pathology report after the surgery.  If your husband chooses surgery make sure you get a copy of this.  I have posted the surgical report before.  I can do it again if you folks want to know what really happened, at least, during my surgery.  Anyway, good luck on your journey.

Surgical Pathology Report * Final Report * 

Final Pathologic Diagnosis 

1. ANTERIOR BLADDER NECK MARGIN, EXCISION: 

BENIGN BLADDER NECK TISSUE. 

2. ANTERIOR PROSTATIC FAT, EXCISION: 

BENIGN FIBROADIPOSE TISSUE. 

3. LEFT OBTURATOR LYMPH NODES, EXCISION: 

THREE LYMPH NODES NEGATIVE FOR METASTATIC CARCINOMA (0/3). 

4. LEFT DEEP PELVIC LYMPH NODES, EXCISION: 

TWO LYMPH NODES NEGATIVE FOR METASTATIC CARCINOMA (0/2). 

5. RIGHT OBTURATOR LYMPH NODES, EXCISION: 

THREE LYMPH NODES NEGATIVE FOR METASTATIC CARCINOMA (0/3). 

6. RIGHT DEEP PELVIC LYMPH NODES, EXCISION: 

BENIGN FIBROADIPOSE TISSUE. 

7. URETHRAL MARGIN, EXCISION: 

BENIGN URETHRAL/PERIURETHRAL TISSUE. 

8. PROSTATE AND SEMINAL VESICLES, RADICAL PROSTATECTOMY: 

ADENOCARCINOMA, GLEASON SCORE 4 + 3 = 7 (GRADE GROUP 3), WITH MUCINOUS DIFFERENTIATION. 

PERCENT OF CARCINOMA THAT IS PATTERN 4 = 90%. 

PATHOLOGIC STAGE (AJCC 8TH ED, 2017): pT2 pNO. SEE SYNOPTIC SUMMARY. 

Synoptic Summary 

PROSTATE CANCER CASE SUMMARY 

PROCEDURE: 

Radical prostatectomy 

PROSTATE SIZE: 

Size: 4.4 cm, x 3.7 cm, x 3.6 cm 

PROSTATE WEIGHT: 

Weight: 32 g 

LYMPH NODE SAMPLING: 

Pelvic lymph node dissection 

HISTOLOGIC TYPE: 

Adenocarcinoma (acinar, not otherwise specified) 

HISTOLOGIC GRADE: 

Primary Gleason Pattern: Grade 4 Secondary Gleason Pattern: Grade 3 Total Gleason Score: 7 

TUMOR QUANTITATION: 

Proportion (percent) of prostatic tissue involved by tumor: 15% 

TUMOR LATERALITY: 

Bilateral involvement 

EXTRAPROSTATIC EXTENSION: 

Not identified 

SEMINAL VESICLE INVASION: 

Not identified 

MARGINS: 

Margins negative for invasive carcinoma 

TREATMENT EFFECT ON CARCINOMA: 

History of treatment unknown 

LYMPH-VASCULAR INVASION: 

Not identified 

LYMPH NODES: 

Number of regional lymph nodes examined: 8 

Number of regional lymph nodes involved - none identified 

PATHOLOGIC STAGING: 

PRIMARY TUMOR: pT2 

REGIONAL LYMPH NODES: pNO DISTANT METASTASIS: Not applicable 

Heathhoff3
Posts: 7
Joined: Jan 2021

Thank you- my husband seems like a mirror of you. He is a Gleason 7 and a T1C 4+3=7. Did you have your lymph nodes removed? The surgeon wants to wait 6-7 weeks before sugery for the biopsy to heal- I really like the surgeon. He studies at MD Anderson and has great reviews. I think we will wait for the scans and see what they show and then take everything for a second opinion. just praying it's still in the prostate. 

lighterwood67's picture
lighterwood67
Posts: 294
Joined: Feb 2018

The doctors biopsied 8 lymph nodes.  None were involved.  Humans have approximately 500–600 lymph nodes distributed throughout the body, with clusters found in the underarms, groin, neck, chest, and abdomen.  Please understand, at this time, that there are 2 curative treatments for prostate cancer (surgery and radiation).  Be sure and get an opinion from a radiation oncologist and a medical oncologist.  My wife's response to me having PC was to have it taken out.  I elected surgery after going to a surgeon and a radiation oncologist.  Just my opinion, surgery is the hard road.  If you read a lot on this forum, there are success stories for both surgery and radiation.  The final decision comes down to you and your husband based on medical advice provided.

ASAdvocate
Posts: 160
Joined: Apr 2017

With higher grade prostate cancer, there is no gold standard treatment, as men are choosing surgery and radiation in equal numbers

Very often, a combination of surgery, radiation, and hormones are used, or a combination of two types of radiation.

The standard advice for his pathology is to consult with a surgeon, a radiation oncologist, and a medical oncologist before deciding on a treatment. And, never let a doctor describe a treatment that they don't provide. Always speak with a provider.

Heathhoff3
Posts: 7
Joined: Jan 2021

The Dr explained all the options. My husband just wants it out. If it's only in the prostate that is what we will do most likely. I was just wondering if anyone has had similar diagnosis and are cancer free. 

lighterwood67's picture
lighterwood67
Posts: 294
Joined: Feb 2018

Just got the results of my 6th PSA test.  RP in 3/2018.  <0.1ng/ml, technically zero.  Good luck on your journey.

 

Old Salt
Posts: 806
Joined: Aug 2014

All advice given so far is good.

I just want to re-emphasize that radiation therapies should be considered as well.

 

Clevelandguy
Posts: 691
Joined: Jun 2015

Hi,

If it was me I would do an MRI and a PET scan to determine if the cancer has left the Prostate.  If his cancer has left the "barn" then if it was me I would do radiation vs surgery but thats up to you and your doctor(s).

Dave 3+4

Heathhoff3
Posts: 7
Joined: Jan 2021

Thank you- the insurance won't pay for a PET scan. The Dr is doing an MRI and nuclear bone scan. Then if it has left the prostate he wants to do hormone and radiation. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3659
Joined: May 2012

Your husband is the ultimate decision maker.  If he is most comfortable with surgical removal, then that is a sound decision, and he should be supported in it.   Pathology of the gland after it is removed will strongly indicate whether there was metastatic escape.   Do insist that he remove as many nodes as is reasonable in such a case.  ALL surgeons ALWAYS remove the seminal vesicals also, but mention that this is a must-do also.

Escape from the gland is nearly always via either 'preineural involvement' (down a nerve bundle), into the bladder, or via 'positive margins' (going through the wall of the prostate gland itself).   If all of these are negative, along with all lymph nodes, then VERY LIKELY there has been no spread.   If any is positive, then there is still radiation and HT available. 

There is an intuitive and instinctive desire to have cancers 'cut out' when it is a clinically reasonable choice; many men react this way.  Be there for him in his choice.

Butch Smith
Posts: 1
Joined: Feb 2021

Hello, I do not know how old your husband is but I am 53 so the two things I cared about was #1 staying alive and #2 a healthy sex life. I decided not to do surgery after much research. I was able to be  part of a clinical trial for a new EBRT that only took two weeks of treatment. The treatment you do not even realize anything is happeining. My PSA has now dropped to a 1   4 months oafter treatkent but I have some side effects. I still think this may be better than the surgery side effects.  I had no problem acheiving an erection before the treatment but instantly had a problem once treatment started. They prescribed Viagra that does work. Takes like 20 minutes. Ok so I got that taken care of. Ejaculate has no sperm just semen. Same amount however and maybe even more than before which is strange cuz everything I read this is supposed to go down. There is no sperm it is pure clear semen. I now believe I may be sterile. My testicle size has decfreased by at least half and the Penile size has also been reduced. You wont find any info on that out there which is why I am here. The good news is I am alive and can still have a healthy sex life but I really want to find more info about what has happened to me. Either I am the only guy on earth or I have a feeling most guys will not discuss this because it is so embarrasing. I still think Radiation is better route,

jackie23
Posts: 1
Joined: Feb 2021

My 63 year old husband had a biopsy and 11 of 15 cuts had a Gleason of 9. We have Bone and Cat Scan scheduled for next Tuesday, My husband is scared and is questioning removal of prostate that the Doctor had stated needs to be done. We are currently at NYU Langone and thinking of switching to Sloan. Need advise as to experiences with surgery as well as Doctors at both hospitals.

My Husband is vegan and a runner. He is very active

Old Salt
Posts: 806
Joined: Aug 2014

Please start a new thread; there is a button for that on the earlier screen; "Add new forum topic"

swiet3
Posts: 6
Joined: Apr 2021

Hello, 

We are also new to this.  My husband's score was also a 9 & has had his prostate removed with robotic surgery.  His doctor did not give him a choice and told him it needed to be removed.  His margins after surgery came back clear and his lymph nodes were clear.  The bone scan prior to surgery was clear also so we thought whew, we are in the clear and were relieved...  His blood test for his PSA level 7 weeks after surgery was still high which told them it had spread & we were devastated!  He was scheduled for a full body PET scan and it showed it was in 2 places in the bone.  They started him on hormone shots and placed him on the generic of Zytiga (which I had to fight with insurance for over 3 weeks to get - that's another long story).  They had him get his colonoscopy to be sure everything was normal before begining the journey to start radiation (which is supposed to begin next week).  I would say the decision is your husband but if you trust your DR. and he is recommending removal to listen closely.  I would only do the robiotic surgery however.  My husband's DR. used to do the surgeries the old way years ago and only does the robiotic now (for many years) and I think he did an excellent job.  My husband is 61 is not overweight at all and is very active and had no symptoms.  He only went to be checked bc his PSA score was high.  We have been married for 33 years and I am trying to live day to day bc if I think of the future, I break down.  I know he must be scared & I am terrified!  I am so sorry for anyone that has to go through this.  I have lost many to cancer over the years... my mother most recently 6 years ago, my cousin, my father in law, my stepfather way too many.  

Josephg
Posts: 289
Joined: Jan 2013

Welcome to the Forum that nobody wants to join. I suggest that you open a new thread on this PCa Discussion Board, so that we all can track and contribute to your husband's PCa journery in one dedicated thread for him.

Your husband's story reinforces the need to receive second opinions on all medical issues of consequence.  We are not medical professionals here, and we cannot provide you with any specific medical advice.  We are all PCa patients, however, and we are fully qualified to express our opinions from the patient's experience and perspective, and to share with you our collective knowledge and research on PCa.  Yes, it seems odd that your husband's doctor would strongly recommend surgery with a 9 Gleason score.  Historical data strongly suggests that for folks with 9 Gleason scores, the PCa has probably already spread outside of the prostate, and invaded nearby tissues and/or bones.  But, the surgery has already been performed, and we PCa survivors learn quickly that the best path forward in life is not to linger in the past, but instead, to focus on the present and the future.

I suggest that, if you have not already done so, have your husband engage a Medical Oncologist, and have this Medical Oncologist be the team leader and guide for his PCa journey, going forward.  A Medical Oncologist has no predispositions toward various forms of PCa treatments, and they will refer you to specific medical specialists, as needed, along his PCa journey.  Further, Medical Oncologists are experts in hormone therapies, which it appears that you husband is currently involved in.  In my case, when my Medical Oncologist felt that radiation therapy was needed, they referred me to a Radiation Oncologist that they already knew and validated to perform the procedure.  When the radiation therapy was complete, the Radiation Oncologist went away, but my Medical Oncologist remains with me as the team leader of my PCa journey, and meets with me every 3 months.

I am currently on a PCa hormone cocktail therapy that includes Zytiga, and I well know the financial challenges associated with that drug ($7000 per month retail, and ~$2000 per month through most medical insurance policies).  I was informed by my Medical Oncologist, when they recommended Zytiga, that GoodRX has a coupon (which is free) available for Zytiga that can dramatically reduce the monthly cost for this drug.  For me, the cheapest pharmacy option for Zytiga, using the GoodRX coupon, was Walmart, where I bypass my medical insurance policy completely, and I pay $298 per month for it.  In fact, for my last refill of Zytiga at Walmart, using my GoodRX coupon, I was charged only $7 (I know, Wow!).  Maybe this was a mistake, but that is what the Walmart computer returned, using the GoodRX coupon, and that is all that I paid for that month's supply of Zytiga.  So, this is something that you may wish to explore.

There are many very knowledgeable PCa survivors here on this Discussion Board, and we are here for you and your husband.

I wish your husband the best of outcomes on his PCa journey.

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