CSN Login
Members Online: 6

You are here

Husband Newly Diagnosed

fullmoon50's picture
fullmoon50
Posts: 40
Joined: Dec 2017

My husband was told last week that he has prostate cancer. He had an abnormal DRE and his PSA was >30. We have no further information but I’ll go with him on Wednesday December 20th to see the urologist. One of the most crazy-making facts thus far is that he had a PSA of 9 in the Summer of 2016 but his primary doctor neglected to tell him. So the cancer has been growing unchecked for more than a year.

I know we have very limited information at this point. However I did read that the chance of advanced/metastatic cancer is greater when a man presents with a PSA >20. Does anyone have thoughts on this point?

Also, what questions should we be asking on Wednesday? Are there particular points I should pay more attention to? This urologist is not affiliated with a teaching hospital. We are within 30 miles or so of University of California San Diego hospitals. My inclination is to insist he go there. Thoughts?

I want to be supportive without being a nag. I’ll admit that it’s hard because his health has never been a priority with him. He is overweight , has Type 2 diabetes, and has had hypertension for 35 of his 65 years. He has been hospitalized 3 times in the past 4 years for episodes of congestive heart failure. He is NOT in heart failure as they have been discrete episodes. From others’ experience, will these health issues complicate PCa treatment?

Thanks in advance. This may be a duplicate post but I can’t find the original.

 

VascodaGama's picture
VascodaGama
Posts: 2988
Joined: Nov 2010

Hi Fullmoon,

I am sorry for the situation. I have some questions too but firstly let me answer to your above three inquires.

(1) Regarding the high PSA; surely high values are typically a cause of cancer but a big volume of benign hyperplasia (big glands) also causes an increase of the PSA that sometimes can reach above average values. The only way to judge an aggressive form of cancer and a voluminous spread is by testing via a biopsy and proper image exams. In this regard I wonder how he was diagnosed with prostate cancer. The PSA does not diagnose cancer but suggests cancer.

(2) Regarding the List of Questions; I would like to point out that you should accompany him to the consultations, taking notes or taping the conversations. You can prepare your own list based on below links, including items in regards to his other health issues that you mention above. The doctor assisting your consultation on Dec 20 is an urologist (nothing wrong with that) but you should consider a Medical Oncolopgist due to the involvement of his case of diabetes. Additionally you should get second opinions from a radiologist as radiation treatment is commonly better incase of spread. In such regards, the urologist may be better for the initial tests and for the clinical stage. You should get all evidences and copies of all exams and tests, and move forwards timely without rushing. Here are the links:

https://csn.cancer.org/node/224280

http://www.cancer.org/cancer/prostatecancer/detailedguide/prostate-cancer-talking-with-doctor

http://www.cancer.net/patient/All+About+Cancer/Newly+Diagnosed/Questions+to+Ask+the+Doctor

(3) Regarding the Diabetes and Heart issues; these may limit the treatment protocol as well as some sort of testing. A typical issue in diabetes cases is kidney insufficiency (CKD) which condition would limit the use of contrast agents restricting the type of image studies. The problem also restricts the compound in chemotherapy or drugs in hormonal treatments. Surgery may be restricted due to and depending on the level of the heart problem. He will need to get a medical oncologist to help in guiding his treatment steps along his journey.

I wonder how big he is. You commented him being overweight and that can limit surgery too. In any case the first step is to get a proper diagnosis leading to a due clinical stage. From there you should consider the opinion of a medical oncologist. The final decision should be done by your husband so that you can help him by education on prostate cancer, treatments, risks and side effects, so that you can point out any issue that will prejudice his quality of life. For instance; incontinence, ED, colitis, etc.

Here are some materials for you to read;

http://www.ccjm.org/index.php?id=105745&tx_ttnews%5Btt_news%5D=365457&cHash=b0ba623513502d3944c80bc1935e0958

Physical fitness programs and proper nutrition are important when dealing with prostate cancer. Here is a copy of UCSF's publication on Nutrition & Prostate Cancer;

http://cancer.ucsf.edu/_docs/crc/nutrition_prostate.pdf

Best wishes and luck in his and yours journey.

VGama

Please note that I have no medical enrolment. I have a keen interest and enthusiasm in anything related to prostate cancer, which took me into researching and studying the matter since 2000 when I become a survivor and continuing patient.

fullmoon50's picture
fullmoon50
Posts: 40
Joined: Dec 2017

Thank you, V, for a prompt reply and the attached resources. His primary routinely checked his PSA though he didn’t mention the prior 2016 elevated PSA. When that doctor got the results indicating PSA is now >30,he referred P. to the urologist. The urologist found DRE results abnormal and followed that with a biopsy. My husband got a phone call that only told him biopsy shows cancer but with no further details. I assume we get the full report on Wednesday. I was quite shocked that the call dropped the headline but without the story details. 

P. is 5’10” and weighs about 230. He’s been seeing an endocrinologist as well as a cardiologist. His hypertension and diabetes is at least in part due to hormonal issues in his adrenal glands. The prospect of hormonal therapy for cancer concerns me but now I know that he should probably see a medical oncologist. Thank you for that info.

I will study the links you noted. I appreciate that very much. Tonight I’m awake and thinking of my 34 niece who tomorrow will undergo a bilateral radical mastectomy for cancer in both breasts and adjacent lymph nodes. Her kids are 8 and 11. And a few days later, my 22 year old niece will have surgery to remove an ”avocado size” cancer from her thyroid. (Neither is a biological relative of my spouse.) My head is spinning with cancer info. They are both at a distance from me so I need to switch gears to help my husband. Thanks for your help with that.

hopeful and opt...
Posts: 2224
Joined: Apr 2009

There is a weight limit for radiation, however your husband is within limit.

I am sorry for the health issues that are occuring in your family. I wish them well.

Since heart disease is epidemic, even we who have been diagnosed are more likely to die from heart disease than prostate cancer, so your husband (and you) need to follow a heart heathy life style; heart healthy is prostate healthy. Vasco gave the UCSF source that will be helpful to you.

There is a family correlation between prostate and breast cancers, so if your husband is diagnosed, family members to include brothers, sisters, aunts, uncles and even cousin need to be notified.

I agree that you want to go to a center of excellence for your husbands treatment. There is a difference betweeen doctors and facilities. US News and World lists and ranks best hospitals by specialty. You may wish explore this list for UCSD and other hospital near you. 

https://health.usnews.com/best-hospitalsa

I live in Orange County but drive to UCLA

local support groups. There are local support groups in the san diego area.....If I remember right, Dr. Barken moderates one of these( I don't know if this is still current). USToo.com sponsors local support groups world wide, so google them

.....

PS Make sure that you receive a hard copy of the pathology report and and other pertinent information. You will need this for visits to specialists and discuss here if you so wish.

JayAur's picture
JayAur
Posts: 33
Joined: Aug 2017

in my humble opinion...slow down and make sure you have ALL of the info. before you make any ‘no turn back’ decision.  There can be many things that cause PSA to go nuts.  Sometimes a hammer thinks everything is a nail, and sometimes even the best MD’s see only what they expect.  

You are 48 hours away from your medical meeting.  Please listen, learn but then say, “Thank you, we’ll get back to you with our decision.” This disease is not like an enlarged aorta, inflamed appendix, bleeding ulcer, etc.  

This one needs your having the best information and time to make a decision.  Again IMHO.

fullmoon50's picture
fullmoon50
Posts: 40
Joined: Dec 2017

Well, that biopsy news today sure sucked. Darn it! Eleven cores were retrieved and one was missed by needle. The 11 cores all had cancer. One had a 40% volume while the other 10 had volumes ranging between 60% and 80%. His Gleason is 10. PSA is 34.

The urologist recommends an abdominal CT and a specialized bone PET scan. I asked about the Tesla MRI which is available. While he thinks the PET scan is what’s needed, he agreed that we can discuss that with a radiation oncologist. I mentioned my husband’s other health issues and asked about a medical oncologist. He agreed that’s appropriate. And we did get a hard copy of biopsy.

My husband had decided to not do any research prior to getting biopsy report. He was therefore stunned  by the results. I was intellectually better prepared but it’s still shocking to hear the words. The Doctor explained that the cancer will be staged based on scan results. I guess my concern is that my husband is in the initial shock and panic that so many of you have shared. I’ve told him about this discussion board because I’ve learned a lot from each of you. I don’t want him to feel that this is an urgent problem requiring a quick decision. My wish is that he go to the local cancer center affiliated with an outstanding teaching hospital. I guess that’s my impatience about how I hope he approaches the diagnosis. Hmm... time to practice what I preach and allow him the dignity of processing this terrifying news in his own time. 

Thank you for all for sharing your journeys. Here’s hoping he’ll join you here!

hopeful and opt...
Posts: 2224
Joined: Apr 2009

I am sorry for your husbands diagnosis.

A bone scan is recommended by the American Urological Association for men with Gleason 8 and above.

With the extensive Gleason 10 found there is extracapsular extension, that is, the cancer has escaped the capsule. A full body PET scan is required to determine where the cancer is...there are various PET scans available...some investigational ones are better than others. 

Your husband will have to have hormone therapy.....a Medical Oncologist is the doctor who is best qualified to administer these drugs, and needs to be the leader of your medical  team....you want the very very best that you can afford and find.

In Marina Del Rey, CA there is a group of medcal oncologists that specialize only in prostate cancer, Prostate Oncology Specialists with Drs Scholz, Turner and Lam  and are world known. I don't know what your coverage is, or what medical onologists are available in your area, but, they are the best. This would be drive for you, but worthwhile

https://www.google.com/search?authuser=0&source=hp&ei=IV07WrSeMIeD0wLBzqiQCw&q=dr+mark+scholz+marina+del+rey&oq=sholtz+marina+del+&gs_l=psy-ab.1.0.0i13i5i30k1l2.2930.22204.0.25312.29.26.2.0.0.0.118.2518.12j13.26.0....0...1.1.64.psy-ab..1.28.2650.6..0j35i39k1j0i131k1j0i20i264k1j0i131i20i264k1j0i10k1j0i10i46k1j46i10k1j0i22i10i30k1j0i22i30k1j0i13k1j0i13i10k1j0i13i30k1j0i13i5i10i30k1j0i8i13i30k1j33i22i29i30k1.131.HuEKaUvdqNc

https://www.prostateoncology.com/

 

VascoDaGama is the expert at this forum about aggressive diesease and hopefully he will respond again to this thread.

VascodaGama's picture
VascodaGama
Posts: 2988
Joined: Nov 2010

Fullmoon,

We all would welcome him to this forum and would be ready to help as far as we can. In any case, you know by now that Gleason score (5+5) 10 is the highest in aggressivity. Your husband needs the assistance of a medical oncologist specialist in PCa, as soon as he gets the scans and is provided with a clinical stage. Very rarely do Gleason 10 guys present a contained case. Some are localized (near the gland) and some at far places, commonly in bone. The bone scan, PET and MRI will show how far the cancer has spread, if any.

Apart from the high aggressive Gleason grade, your husband's case is voluminous (the whole gland seems to be infested) requiring a more aggressive type of therapy. I wonder if your husband has any symptom that he can relate to the cancer. For instance; how about urination problems, or ED, or pain?
The common preferences in aggressive localized cases is a combination of two types of radiotherapy (Brachy +IMRT) or the combination of Surgery, to dissect the whole gland (debulking the big tumor) plus IMRT, to cover the localized lymph nodes, bone and adjacent tissues. When the cancer is found at far places doctors tend to recommend chemotherapy plus hormonal treatment (ADT), reserving radiation for latter administration to alleviate pain when this becomes unbearable or when any bone metastases become dangerous in joints leading to its collapse and paralyzes.

I believe that his oncologist will explain in detail my above comments but you can add questions to your list in regards to the above once you get the results from the scans.

I would recommend you to get some particular tests now before starting any treatment, such as a DEXA bone densitometry scan (to verify any osteopenia requiring the use of bisphosphanates typical in hormonal treatments), Testosterone (to verify the benefit in ADT), and a colonoscopy (to check for existing ulcerative colitis). I think he got the lipids checked due to his other illnesses.

Be prepared and do things coordinately. Read books to know more about the meaning of aggressive cases. I would recommend you to check on this link for reading materials; https://csn.cancer.org/node/311252

His case is not simple but he will manage to control it. Many survivors in this forum with similar diagnosis are doing well and enjoying life fully.

Best wishes and luck.

VGama

 

fullmoon50's picture
fullmoon50
Posts: 40
Joined: Dec 2017

Thank you, Hopeful and Vasco. As always, I am comforted that there’s a place to connect with men who have similar experiences with PCa. Vasco, he is entirely asymptomatic at this point. The thought just occurred to me that he has been told in the past year that he has low testosterone. Now I’m wondering if that means that ADT will be less likely to put him in 2 year remission as the urologist explained it would do. Ah well, it’s a step at a time. He will schedule the scans today. Does it take very long to get scan results? 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3278
Joined: May 2012

Full Moon,

Scan results, like biopsies, vary by the institution performing them, and the priority the doctor puts them on.  The imaging is available almost immediately online for doctors to look at, but review by a radiologist takes a bit longer, and only a radiologist can read the scans definitively.  It usually takes longer to get a scan than to get results.  I WOULD go to a first-class, full service oncology hospital or center for care.  His case is highly aggressive and probably significantly advanced.  As Vasco noted, he will need a medical oncologist leading his care, NOT a urologist, unless the urologist is also Board Certified in medical oncology (most urologists are NOT, even when they treat advanced PCa).

In your first post you asked about his comorbidities (other serious health problems) and what effect they might have.  His weight, diabetes, and especially the CHF probably preclude surgery, although metastatic disease usually is not approached via surgery anyway.  His care will very likely consist of radiation (IMRT/IGRT) and Hormonal Therapy (HT).  Chemo is a maybe, but is usually held off until after HT runs its effective course, except in severe cases that need to be beaten back before HT is begun (as I said, that would be a rare/atypical sequence of treatments).

I would not try to read anything in to old T-level results at this time.   

And, there is no way any oncologist could reasonably estimate how long HT will work on him:  Any result between wellness for years (most common) to no improvement (rare) are all within clinical possibility.  But it is probably a good sign that his doctor is currently optimistic.  Several regulars here have been diagnosed with results as bad as your dad's and have done well for years....

I am sorry so many close to you are having serious cancers addressed simultaneously. I pray they all come out of this well.

As several have stated, your husband's case is not suitable for a 'local yokel' to lead.  'Thirty miles to San Diego' is nothing when battling cancer; many people have to go around the country or even around the world for the best specialists.

max

VascodaGama's picture
VascodaGama
Posts: 2988
Joined: Nov 2010

Fullmoon,

Please take Max’s advices in your questions above. However, in regards to the low testosterone, you are touching a subject that has been discussed for many years by researchers/doctors, on its influence in the initiation and progression of PCa. I have been following those studies since 2005 (after RP failure) when searching for my next step and become curious on the matter,but as of today no conclusive answer has been ascertain. In any case, it is true that a greater number of patients with high Gleason rates were found to have low levels of circulating testosterone and that these cohort of patients are prone to earlier refractory of hormonal therapies.
Your husband’s doctors will not reply about this inquire unless they are researchers or involved in investigations. If interested, you should do some researches on the matter in regards to the influence of endogenous and exogenous testosterone in PCa matters.

In such regards, if your husband’s future treatment involves hormonal therapy (ADT) with the traditional LHRH shot (Lupron, etc) then he should take into consideration any small variation of T in the serum. He needs a starting value (from a test done before any treatment) to compare with the test-values along the treatment.
Never the less, ADT can be done with other drugs acting differently such as Casodex or Xtandi (antiandrogens), Zytiga or Ketokonazole (CYP17A1 inhibitors) that avoid the manufacture of androgens from cholesterol.

In these forums I have read many reporting to have aggressive PCa cases but with low levels of PSA. This is typical in high grades of Gleason patterns that are so much differentiated that do not act as a normal cell producing much PSA serum. Surely this seems not to be the case of your husband. He has a high PSA level which makes me think that his cancer is aggressive but treatable. ADT may be effective.

Just as a conclusive note on the above subject, I want to say that in recent investigations there have been culminating findings in regards to the genes that are involved in sustaining life. In other words the little baggers that, forcibly try reviving cells that have been damaged or prone to die by unnatural processes (radiation, chemo, etc). This is thought to be the reason behind Darwin theory on the survival (and adaptation) of the species. Our cells (benign and cancerous) got these switches providing the means for survivorship. Prostatic cells live of androgens (testosterone) so that, when these are lacking the cells will find ways to get the testosterone, even starting to produce the stuff by themselves. This is the condition we name refractory in ADT.

I still reinforce the opinion that your husband should do the tests/exams I listed in my above post. His bone health may be in jeopardy without knowing. ADT will deteriorate bone which in many PCa cases require adding a bisphosphanate (Fosamax, Prolia, etc) to the therapy.

Best wishes,

VGama

fullmoon50's picture
fullmoon50
Posts: 40
Joined: Dec 2017

Hello, all. We managed to enjoy our holiday even with the recent PCa diagnosis. The CT abdominal scan and the PET bone scan are scheduled for January 5th. The follow up appointment for results is scheduled January 11th with the urologist. We will leave there with a disc of scans. It’s a step at a time. My hope is that my spouse will make any treatment decisions after consult with the Moores Cancer Center at UC-San Diego. He is not convinced yet that it’s necessary to travel there as it’s south from home and even further south from work. 

That brings me to the question of what my role is. What did you find helpful from your support system? What was annoying or not helpful? I am usually the one who does the research and footwork on various issues. However, it seems important from all I’ve read on this board that he own his diagnosis, be informed, and advocate for himself. He needs to make the treatment choice, if in fact he gets a choice. How do I support him? Thank you all again for your sharing of experience.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3278
Joined: May 2012

fullmoon I had two completely differing cancers within five years of each other.  The whole process was harder for my wife than for me.  I do not think I would have got through it without her, but I was bedridden for many months with the first cancer, and needed nearly a year to recover from the treatment.  

Do as much as he is comfortable with.  Going to his appointments with him and taking notes is very valuable.  And keep paper copies of EVERY test result. Start a loose leaf notebook.  What you or he remembers next week you will not remember next year.

And know that the level of assistance that he needs may VARY:  Little tomorrow, more next month. Adjust as necessary.  Any person who is an adult of sound mind must make their own treatment choices, but do give feedback, and listen to why he thinks his decisions are best for him.  

max

fullmoon50's picture
fullmoon50
Posts: 40
Joined: Dec 2017

Hello to all. My husband’s abdominal Ct scan and PETscan were scheduled for January 5 but canceled due to insurance snafu. This is very disappointing but from all that I’ve read here, I’ve stayed mostly calm. My spouse made the necessary calls about insurance and learned there will be a 3-4 week wait before reinstatemeant of benefits. I’d prefer he get scans sooner but that’s an expense he refuses to incur.

Herein is my concern: as far as I can tell, he hasn’t done any research on PCa nor is he sharing the diagnosis with any family or friends. Until the scans were canceled, I was respecting his wish to wait to tell our young adult son about the illness. It feels like a lot of secret keeping so we agreed to talk to our son this coming weekend. That is a great relief as it was feeling like a lie of omission.

I worry that my husband isn’t very far in the process of accepting the reality of his having cancer. He usually attacks a problem in a very intellectual way by doing a lot of reading. He is acting uncharacteristically. Am I expecting too much too soon from him? Can it be denial that is keeping his head in the sand? I am typically the one to research issues like mortgages, auto reviews, etc. because I have the time. We then discuss the best options and go from there. Prostate cancer is different to me. Of course I’ll inform myself but I’m concerned that he’s done so little. The insurance issue should have been handled months ago or at least immediately after he heard the word cancer a month ago.

Am I expecting too much? Suggestions? I’ve told him about this discussion board and sent him links you have all suggested. Now what? Thank you all for your knowledge and willingness to share. 

 

 

graycloud
Posts: 34
Joined: Jan 2018

We are new to this board.  My husband's diagnosis was end of October.  We chose to wait to tell our daughter and parents.  We wanted to wait until after Christmas and after my daughter's finals, but we had to tell them when we had "another" last minute trip to MSK in NYC.  This was mid December.  By that time, we already knew our plan which is surgery end of January.  My husband had a few months to get his head wrapped around this whole mess so he was able to talk without as much emotion.  His parents took the news very well, and our daughter took it well too.  She's 14.  He was matter of fact on this is what is, we are seeking treatment at what we feel is the best facility in the nation/world, and he is going to be ok.   We dreaded telling her and his parents, but it was such a relief.  We do have to hide our emotions somewhat at home with a young teenager in the house.  If he is having a bad day, we talk it out after she's asleep. Try to keep the mood up for her which I really think helps keep his emotions a little more in check.   We have a limited circle of friends that know what we're going through as well.  It's hard trying to hide what's going.  There is so much embarrassment for my husband - mainly because he feels he will be a freak show once this is over.  He won't be ....he will be the same man I've always loved.  It will be a new different - but that's ok with me.  I hate the stigma that surrounds this disease. 

JJO
Posts: 10
Joined: Sep 2017

Telling friends and family members about a cancer diagnosis is difficult, particularly when you are still selecting what to do.  I waited several months and then only told my kids, my brother and one other relative because I'm on active surveillance.  I have not told any friends or other relatives.  I will do so if I need treatment.  I will likely never tell my 89 and 90 year old in-laws unless I decide on surgery, which we'd have to tell them about, I suppose.  I see no reason to worry them when I'm not being treated.  I'd recommend patience with the "disclosure" issue.  There's a lot going on, and how, when and to whom to disclose the issue is not the highest priority.  

Old Salt
Posts: 720
Joined: Aug 2014

to Fullmoon is that you are doing a fantastic job educationg your self while facing a very difficult situation. The fact that you will be telling your son might entice your husband to become more involved in the planning.

On the other hand, finding highly respected medical and radiation oncologists may be all that is needed for now.

fullmoon50's picture
fullmoon50
Posts: 40
Joined: Dec 2017

Hello, everyone. I found a local support group in La Jolla, CA and my husband and I went to today’s meeting. There was a panel of 4 speakers from Moore’s Cancer Center at UC-San Diego: 3 radiation oncologists and a medical physicist. You can find the support group website online at ipcsg.org. They post a newsletters as well as videos of their meetings.

This was the most information my husband has received apart from the biopsy results appointment with his urologist. There was an open questions session after the speakers. I was interested whether he might qualify for one doctor’s work with intermediate and high risk PCa. He has added brachytherapy to external radiation with good results. There will be a summary online at some point. Anyway, I asked my questions and his answer was hard to hear as it sounds unlikely-not impossible- that my spouse will be a candidate. Something about the discussion and the doctor’s response to my questions got my husband’s attention in a way nothing else has so far. He turned to me and said “I‘m totally fucked.” That was the first acknowledgment I’ve heard from him about the seriousness of his diagnosis. It hurt my heart to see that understanding dawn on him. 

He still hasn’t scheduled the CT scan and Petscan until insurance issues are worked out. I think that being in a room with about 100 men with PCa and listening to the doctors finally has him peeking over his well-fortified defenses to see what battle he’s facing. My fingers are crossed that he will join you on this discussion board soon. I’ve been lurking and reading and continue to be impressed and grateful for your knowledge and sharing of experience.

VascodaGama's picture
VascodaGama
Posts: 2988
Joined: Nov 2010

I am glad for knowing about his attendance at the PCa conference. After all he may have been researching without telling you and after listen to the speakers realized that what he has read had some truth in it . Denial is typical in all us patients when diagnosed with the cancer. There is also the erroneous perception that we are the ones to blame for contracting the disease. On top of that it come the worries involving treatments that will threaten our manhood. ED is a fact in serious jeopardy, no matter what we chose.

I agree in informing the family. No one will be happy with a late explanation in the process. Apart of that, PCa is known to affect the members in the family. For instance, your son and daughter (breast cancer shares the same genes with PCa) have four times higher risk for contracting the disease, once such as been diagnosed in parents. They should start caring on this issue as early as at 40 years old.

I think that money should not restrain proper testing. Surely his present conditions will not alter in a couple of months. He can wait for the insurance reply, but PET is typically not covered by all insurances. He needs to consider which one can best serve him. It should include all diagnosis process, treatment and after care.
Some blood tests are also not included but these are not expensive and can be done at a local laboratory (Testosterone, DEXA scan, vitamin D, B12, etc).
A CT scan cost about $200, PET about $2,000, MRI about $350, Testosterone about $12, PSA about $20, DEXA about $50, treatments about $18,000 to $35,000, etc. Some tests need a doctor's request which consultation fee should be added.

Fullmoon, you are fabulous. Your man is fortunate for your diligence. He will show some grace to you one day. Just needs understanding at the moment.

Best wishes and luck in this journey.

VGama

hopeful and opt...
Posts: 2224
Joined: Apr 2009

As I mentioned to you, I live in Orange county. Many men that I know have gone to see Fabio Almeida, MD,phoenix molecular imaging . He does a acetate PET scan that is considered investigational, but provides better results than most PET scans that are available. The cost for this MRI is somewhere between 2500 and 3000 dollars. It is not covered by insurance.

https://www.google.com/search?authuser=0&ei=JAdlWobMNIm6jwOt1qvwDA&q=c11+acetate+pet+scan+phoenix&oq=phoenix+molecular+imaging&gs_l=psy-ab.1.0.0i71k1l4.0.0.0.189919.0.0.0.0.0.0.0.0..0.0....0...1..64.psy-ab..0.0.0....0.U5Pib7bg3io

There are also clinical trials that may be available, at no charge, which you need to investigate. Since your husband has not been treated it is more likely that you may find a site. There is also a 68GA-PSMA PET/CT scan that is probably better than the excellent Acetate 

Also good, but not as excellent as the above two , the Axumin PET Scanning (18F-FACBC) has recently been approved by the FDA for men wih rising PSA after previous surgery or radiaiton.

...............................

Support group(s) Great to attend more than one if possible. USTOO is an international organization that sponsors local support groups worldwide, google them.

I attend one local to me. On tuesday, the 23rd at 6:30 PM I will be attending one in Long Beach at long beach memorial about various forms of radiation. 

MeeƟng: Tuesday, January 23, 2018 Refreshments: 6:30p.m.—7:00p.m. Topic: “What every man should know about radiaƟon therapy for prostate cancer” Speaker: Randy Wei, MD PhD LocaƟon: Miller Children’s Pavilion Conference Room A2 

Also on Thursday January 25 I will attend prostate forum of orange county; there is a lecture at 7PM about HIFU that I do not recommend to you, but at 5PM to 7PM there is are two meetings, one for newly diagnosed and the other for advanced cases. I will be at the advanced cases discussion group....I find this to be very informative, discussing particulars of each situation that is presented.

http://www.prostateforum.org/

 

hopeful and opt...
Posts: 2224
Joined: Apr 2009

Maybe overly cautious, but think that it would be a good idea for male blood relatives to have a baseline PSA at 35 years, and of cause women have that annual mamogram. All need to eat and live  heart healthy. I for one do not eat meat or dairy products, and exercise daily..

hopeful and opt...
Posts: 2224
Joined: Apr 2009

Just checked out the speakers at  ipcsg.org. . Several of these speakers present at different support groups. I heard the presentations, mainly at thr prostate forum of oronge county, which is also a  "lay person" support group. The other group that I attend which is hospital sponsored, I only heard one of these speakers.

At any rate you are attending an informative group.

Best

fullmoon50's picture
fullmoon50
Posts: 40
Joined: Dec 2017

Hello, Everyone. Our insurance problems are resolved so I contacted Moores Cancer Center last Tuesday January 23. I sure wish that I'd known the process to become a patient there so we could have started sooner. I was advised that my husband's medical records needed to be faxed, including biopsy findings. The Urologist faxed the next day. The  medical oncologist for PCa would review and the clinic would call to schedule an appointment.

My spouse has not had any scans done yet so I'm assuming that will be the first step. I am very anxious to get more information and clinical staging. What's a reasonable length of time to wait for the clinic to call? His Gleason is 10 and I'm hoping they have some prioritization of cases so he isn't at the end of the line behind guys with low of intermediate risk. Is that selfish? I know that those men are likely as worried as we are. 

Based on your experiences, how assertive do we need to be? I'm from the Nice Girls School of Charm and Etiquette so I don't want to be unreasonable. However, I'll cross to the dark side of it gives my husband any advantage in this battle he's facing. I'm planning to call and ask for a time estimate for his records to be reviewed. However, in my experience, the answer is often either something like "1-3 weeks" or "We're doing the best we can." That's entirely too vague for me! My best regards to all, Mary

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3278
Joined: May 2012

fullmoon,

Although your husband is not yet officially staged, with a Gleason of 10 (quite rare here), he is very likely metastatic/Stage 4.

His treatment will most likely consist mostly of HT, which is very effective today (it gets better seemingly every year now, with new drugs all the time).  It is possible he will receive radiation also.

His lead doctor will have to be a medical oncologist, NOT a urologist or radiation oncologist, although he may need both of those also on his team.  I like the recommendation that you show up and not leave until you have an appointment given above.  The time for being Martha Stewart is over.

max

 

hopeful and opt...
Posts: 2224
Joined: Apr 2009

Good idea for YOU to have a copy of  your medical records pertaining to prostate cancer in your possession, so it is most expedient to provide to specialists, and for reference.

As far contacting Moores Cancer Center, do so tomorrow AM. Place your name on top of the pile. Call, even show up at tne facilty, and do not leave un til you get an appointment.. Do what is necesary, but get your appointment tomorrow.

hopeful and opt...
Posts: 2224
Joined: Apr 2009

ask to speak to the clinical nurse specialist........this person will know what needs to happen......

 

At any rate go up the chain of command.

fullmoon50's picture
fullmoon50
Posts: 40
Joined: Dec 2017

Thanks for your tip! I had no car today but I’ve worked my way up via phone and am waiting a callback from the clinical nurse specialist. The first person told me the timeline is 3-5 business days for the records review. I’m plugging away at the bureaucracy-that’s my job for the day. 

hopeful and opt...
Posts: 2224
Joined: Apr 2009

In person works better.

Mary, Years ago, I was with my lady friend, who is a high level medical practictioner. We were being treated at an HMO at the time. She had a lot of pain in her jaw. We showed up and was able to see a young substitute GP doctor for the day....the doctor said that my friend had to contact the specialist office to make an appointment, they told her next week. Well my friend asked the GP doctor where the"*******"  specialist was located, because she was in pain, was going to his office,

At that point the doctor called the specialist, and we saw him immediately.

Mary, I hope that you get this message.

fullmoon50's picture
fullmoon50
Posts: 40
Joined: Dec 2017

Thanks. I believe you’re correct. Unfortunately, I have no car until Wednesday.  I did get a callback from clinical nurse specialist who said review hadn’t happened yet. She promised to expedite and give me a call tomorrow. I figure I’ll call her first thing in the morning so she doesn’t forget me. 

fullmoon50's picture
fullmoon50
Posts: 40
Joined: Dec 2017

Hi, EveRhône! (Now that’s the strangest autocorrect everyone) 

I finally was able to schedule my husband’s scans for Friday, February 16: CT scan of abdomen and bone scan. I’m still trying to learn exactly what bone scan he’ll get. I had asked the UCSD Moores clinical nurse to check that the scans scheduled at a different hospital were ok by them and she said yes. The local urologist office assistant is very sweet but seems confused by my question. That reaffirms that transferring to cancer center was a good choice. 

As the scans are scheduled and the appointment with the medical oncologist is set, my husband‘s distress is amping up. It’s hard to get him to talk about his feelings but he did own up to feeling “weird.” When asked, he said it feels weird to be staring death in the face. I’ve been reading other threads here today and my heart breaks for the pain and loss so many of you are sharing. Thank you for speaking your fears and for your courage. I discovered another discussion board (Not ACS) where the first topic was someone saying goodbye to his board friends as he was going to kill himself-which he did, according to his wife. The tone of those threads was very discouraging. What I’ve found here is a community of men who are living in the solution. That’s not to discount the real fear and pain you’re living with; rather it’s giving gratitude for how you are facing PCa. Again, thank you all!

fullmoon50's picture
fullmoon50
Posts: 40
Joined: Dec 2017

Hi to all. Finally, after 2 months, my husband had scans done that had been ordered by the local urologist and done at a local hospetal in a new facility. Before the scans, I contacted the Moores Cancer Center medical oncologist to ask if these scans were what they needed. They declined to suggest anything different since they have yet to see my husband. (That appointment is on Monday 2/26) 

He had an abdominal CT scan and a bone scan. Both the doctor and tech seemed puzzled by my question about the bone scan. I asked “What kind of bone scan is this” and was told “It’s a whole body scan.” Duh. I tried again but all I got was that they used Technetium 99. I googled it and see it’s used in nuclear medicine. Does that tell me anything more about the scan? Is it older technology or might it be used in new machines? This facility is only a couple years old so I was hoping he was getting fairly recent technology as I figured it’s not the latest and greatest like cancer centers have.

Yes, I did ask for a CD. (2 actually,which she said wasn’t usual but relented and said we could have 2) The tech suggested waiting to pick them up for 2 days as the reports would then be included. I’m wondering about the attached reports since the urologist that ordered the test has yet to call with results. I told them we absolutely must have it in hand by Monday noon since we see the Moores Cancer doctor Monday afternoon. 

So my question tonight is how do I formulate questions about the scans he’s getting so that I’m understood? I’m highly verbal but couldn’t seem to make myself understood. I know there’s likely more scans to be ordered by UCSD/Moores. 

As always, thank you for sharing your lives here.  Mary

Coldbiker's picture
Coldbiker
Posts: 22
Joined: Jan 2016

Since it’s the first appointment and by what you have shared so far, they won’t really be able to tell you much. Honestly knowing what kind of scans doesn’t mean anything for you. UCSD will do what their protocols  call for. its so easy to wind yourself up trying to take it all in.Relax as much as possible you live in a beautiful area, sunsets on the beach will heal both of your aching hearts. and  let the pros worry about the details at this point, after the scans are reviewed then any additional testing completed and recommendations happens is the time for decisions and questions. hopefully they will be able to use the scans, insurance companies can get cranky about stuff like that.  Having been through this with my wife and me twice now spend the time together trust me,  it will help much more than pouring over the nuts and bolts of it. I would add that I didn’t know how to think about you not having a car, did that delay appointments ? If so please fix that, anything from a rental. Uber, or reach out to agencies that offer transportation for medical appointments. 

VascodaGama's picture
VascodaGama
Posts: 2988
Joined: Nov 2010

Mary,

Whole body Bone scans use Technetium 99. The difference in the image is the machine used in the exam. Gamma machines are the typical ones but a PET machine could do the exam and probably be more specific providing better resolution. Both, Bone scans and CT exams manage to detect lesions when these are big. Small size tumours of less than 1 cm may not be detected which would mean that a negative result could be false.

In any case, you are doing well in getting the results before meeting the doctors. They surely would not request you to repeat the exam but improve the information combining the results with an added MRI (3t) to get a multi parametric exam (the best).

Here are details on CT exams from where to get ideas for your list of questions;

https://www.cancer.net/navigating-cancer-care/diagnosing-cancer/tests-and-procedures/computed-tomography-ct-scan

 

Best,

VG

fullmoon50's picture
fullmoon50
Posts: 40
Joined: Dec 2017

Hi, everyone!  I picked up the scan reports last Friday. The bone scan was clear-hooray! That was unexpected based on what the urologist had told us. The abdominal CT scan was good with the exception of one questionable node.

We saw the Moores Cancer Center medical oncologist yesterday. What a gem! She was clear and organized without a smidge of arrogance. Her residency was at Harvard/Dana Farber and Fellowship at Johns Hopkins. She has somehow mastered the art of writing notes for us to take home while still looking us in the eye. There was also a scribe typing detailed visit notes that were printed and given to us with all the steps to be done next: blood tests, scans, injections, etc.

Dr. McKay agreed the scans look good. To be sure, she’s ordered a chest CT and prostate and pelvic t3 MRI. Yay! She wanted to do whole body MRI but Paul has screws in leg from a break many years ago. Their protocol disallows a whole body scan in that case.

i had a list of bullet points and questions, all of which she covered without prompting with a couple exceptions. Until the new scans, she said it’s premature for a clinical staging. While RP might be possible, she doesn’t favor that due to his comorbidities: obesity, hypertension, Tyoe 2 diabetes, and heart issues. She suggests meeting with a radiation oncologist. I asked if we might see Dr Einck as we had heard him talk at a local support group and were impressed. We left with an appointment scheduled with him on March 19th. He is doing EBRT with a brachytherapy boost for intermediate and high risk PCa. Some guys are also on ADT.

Treatment plan is to start Lupon and Casodex within 2weeks. Paul wants to process all the info a bit longer. After 60 days and with agreement of Radiation oncologist, he would start some sort of EBRT. By then the prostate will be smaller after the ADT. There is a chance that the t3 MRI might alter this plan but she doesn’t think it will. 

While I was a bit disappointed he has to do androgen deprivation, her explanation made sense. We went there believing that ADT would be the sole thing available. That’s what the urologist had told us. The DRE indicated the prostate left side was hard and enlarged and may mean extrcapsular extension. However, she explained that a Stage 4 with local extension can still have curative therapy while a man with bone mets only had palliative therapy. That was happy, happy news! 

All in all, a great visit. Paul was relieved to hear that radiation appointments can be scheduled for evenings so he won’t have to miss work-unless of course he’s not feeling well. He started a brand new job as a Big Cheese in a small business just 3 days before his diagnosis. (That’s our silly family term for a good management position) Did I cover everything? Mrs. Cheese will now take questions.

Live on!  Mary

hopeful and opt...
Posts: 2224
Joined: Apr 2009

Patients with metallic implants, prostheses, pacemakers, or other devices can safely undergo a whole bodyPET scan . These devices are not a contraindication to performing the exam.

https://www.oncolink.org/frequently-asked-questions/cancer-resources/pet-imaging/pet-scans-with-a-pacemaker

There are various PET scans available, 

Probably the best is the psma 68 pet scan. There are various clinical trials. I know that UCLA has an on going one.

https://www.google.com/search?authuser=0&ei=EPqVWt-PDcrZ0gKFhYSQDA&q=psma+68+pet+scan+prostate+cancer&oq=psma+68+pet+scan+prostate+cancer&gs_l=psy-ab.3...19313.27717.0.29785.21.21.0.0.0.0.152.2022.10j10.20.0....0...1c.1.64.psy-ab..1.19.1924...0i8i30k1j0i22i30k1j33i22i29i30k1j33i21k1j33i160k1.0.FWRdD0Bi-88

Here is a PET scan that is also very good, that costs about 2500 to 3000,cash pay that is in Phoenix, AZ. It's an acetate 11. Many men that I attend support groups with me go there for a PET. ( I think that dr alemeda may also do the psma68)

https://www.google.com/search?authuser=0&source=hp&ei=0fiVWu7BOMGA0wKAobTACg&q=pet+scan+prostate+cancer+phoenix+az&oq=pet&gs_l=psy-ab.1.0.35i39k1l2j0i67k1l4j0l2j0i67k1l2.3691.4069.0.8032.4.3.0.0.0.0.126.338.1j2.3.0....0...1c.1.64.psy-ab..1.3.336.0..0i131k1.0.yJQSYKIZRDo

 

Anyway look into a PET scan. Speak with the medical oncologist.

......................

In your pic, I see an attractive woman in a shinny car. Tell us men more about the car. (lol)

fullmoon50's picture
fullmoon50
Posts: 40
Joined: Dec 2017

Alas, it’s my sister’s car. I was back East this past Fall for my high school reunion and she wanted me to arrive in style.  My chariot is more of a vintage workhorse that gets me where I’m going-at least most of the time. 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3278
Joined: May 2012

I have a great deal of prosthetic metal in my body, following being crushed in an auto crash decades ago (the car that I was ejected from rolled over me):  A rod fills my femur, from the hip socket to the knee.  Transverse screws just above knee hold the rod in place.  I have extensive surgical wire wrapped many times around the top of the femur, used to hold a splintered mess together until it healed.

I have never had any issues with receiving a PET or CT, regardless of contrasting agents or not.  (My scans were for Lymphoma checks, not PCa.) This metal has never been mentioned by any radiaologist, either before or after any set of scans.  I have had too many CTs to count, and three PETS that checked from the lower pelvic region (included femoral necks, both legs) to the top of my head.

Also curious:  In my work, I routinely go through metal detectors, and am even "wanded" by the best devices.  NONE OF THESE have ever detected metal in my body.  Getting through an airport is a breeze, never an issue, ever.  Federal courthouses, Attorney General's office -- no beeps, ever.

max

VascodaGama's picture
VascodaGama
Posts: 2988
Joined: Nov 2010

The consultation was great in all aspects. Apart from giving you more confidence on the steps taken, it provided you comprehensive instructions and a plan (not new to you cause your researches), and the trust for having a doctor you can rely on.

The t3-MRI may substitute the PET and provide a reliable exam if the cancer is localized. Together with the CT and BS and DRE will deliver a multiparametric conclusion and a satisfactory clinical stage. The upper body may be judged “clean” for the negative BS and the added CT may find nothing there too. The PET would be more specific in detecting small sized metastases in the upper body, if any. However, after the above exams, you surely can trust your decisions on a therapy.

ADT plus RT seems reasonable for a Gleason 10, PSA = 34 ng/ml and positive DRE, but I wonder if you have discussed the other health issues with the oncologist. Typically ADT starts with Casodex (antiandrogen) followed past two weeks with a Lupron shot (agonist). After two months on ADT the cells are more sensitive to absorb the radiation assuring a more efficient outcome of the treatment. After RT, ADT continues for an extra six months (some oncologists get it longer depending on the case), but you can stop it if his other health conditions so require.

In this regard I would like to recall (above post of Dec 22, 2017) the need in having a testosterone blood test done before staring ADT. DEXA scan should also make part of the investigation to check bone health. Some guys need to add a bisphosphanate to the cocktail. Please let us know about the MRI results.

Thanks for the update. It is helping many guys reading your thread. It is very informative and educational. I am very happy, happy for the happy news.

Best wishes,

VG

fullmoon50's picture
fullmoon50
Posts: 40
Joined: Dec 2017

Hi. Thanks VH and Hopeful for your notes. After plunging into PCa research and appointments with my husband, I purposely took a few days off. I tried my best to not read or think about the topic. Spouse also took a break and joined friends for a weekend out of town. 

We did discuss his other medical conditions with the MO. I gave her records from the endocrinologist and she plans to be in touch with that doctor. She did say that she has concerns about the ADT often used after Lupron and Casodex. She did order testosterone blood test. Husband had a DEXA scan in the past year that indicates he has osteopenia. The only treatment thus far for that has been Vitamin D3 and weight bearing exercise (exercise hasn’t happened) 

Thanks again and I’ll post updates as we receive them.

Old Salt
Posts: 720
Joined: Aug 2014

Casodex + Lupron = ADT

fullmoon50's picture
fullmoon50
Posts: 40
Joined: Dec 2017

Hi. I wasn’t clear. While the MO was ok with Lupron and Casodex as first round of ADT, she wouldn’t recommend some of the others used as they would exacerbate his hypertension, heart issues, and diabetes. The hope is that Casodex and Lupron combined with radiation will be ”curative”

fullmoon50's picture
fullmoon50
Posts: 40
Joined: Dec 2017

Hello to All.  I accompanied my husband to his t3 MRI last week because he thought the process might trigger anxiety/claustrophobia. He told them he wanted to take lorazepam or something similar and that he would bring a driver. The scheduler stressed that he must bring the prescription bottle with him and take the med in front of them. Ok, that was a little different but he complied.

We got to campus and entered a building that had the words “translational research” in its name. It was unlike other medical services buildings I’ve been in before; a soaring lobby with a tiny sign pointing towards MRI check-in. We saw no one else in the lobby or waiting room. After he was escorted to the MRI area, I thought I’d give the receptionist our insurance card and check on any co-pays. I was puzzled when the receptionist told me “The Foundation covers the cost.” She saw I was confused and asked “Your husband signed a consent, right?” As far as we know, he hasnt  signed anything special.

Long story short, would translational research translate to clinical trials for cancer? We clearly weren’t in a traditional medical setting. The process and protocol for the pelvic MRI took 3 hours. My spouse is kind of oblivious to details so he had no answers for many of my questions, other than the thing that compressed his abs was uncomfortable. This post isn’t strictly curiosity on my part. We do see the MO on Thursday and the Radiation oncologist on Monday. I know a lot is churning in Paul’s head but outwardly, PCa doesn’t seem to exist in his life. I’m concerned that a proposal that he participate in a clinical trial might meet with resistance. He’s already said he may just let his original urologist treat him with ADT so that he wouldn’t be driving ”all over the county” in his already busy life. That leads me to think he still doesn’t understand what Stage 4 PCa means. 

I’ve told him stories that you’ve all shared of traveling great distances to get the latest and greatest care. I don’t want him to dismiss any clinical study participation based solely on an 80 mile round trip drive. I guess I’m thinking of suggesting the possibility of a study to him just so the idea starts processing. It truly felt like we were entering new territory walking into a translational research  building. Maybe my imagination  running away on me? Any suggested trials based on Gleason 10, local mets (unless the MRI showed something other scans didn’t) and newly on Casodex and getting first Lupron in2 days? You can tell me I’m overthinking things-not a new thing for me. Thanks, Mary

fullmoon50's picture
fullmoon50
Posts: 40
Joined: Dec 2017

Hello to All.  I accompanied my husband to his t3 MRI last week because he thought the process might trigger anxiety/claustrophobia. He told them he wanted to take lorazepam or something similar and that he would bring a driver. The scheduler stressed that he must bring the prescription bottle with him and take the med in front of them. Ok, that was a little different but he complied.

We got to campus and entered a building that had the words “translational research” in its name. It was unlike other medical services buildings I’ve been in before; a soaring lobby with a tiny sign pointing towards MRI check-in. We saw no one else in the lobby or waiting room. After he was escorted to the MRI area, I thought I’d give the receptionist our insurance card and check on any co-pays. I was puzzled when the receptionist told me “The Foundation covers the cost.” She saw I was confused and asked “Your husband signed a consent, right?” As far as we know, he hasnt  signed anything special.

Long story short, would translational research translate to clinical trials for cancer? We clearly weren’t in a traditional medical setting. The process and protocol for the pelvic MRI took 3 hours. My spouse is kind of oblivious to details so he had no answers for many of my questions, other than the thing that compressed his abs was uncomfortable. This post isn’t strictly curiosity on my part. We do see the MO on Thursday and the Radiation oncologist on Monday. I know a lot is churning in Paul’s head but outwardly, PCa doesn’t seem to exist in his life. I’m concerned that a proposal that he participate in a clinical trial might meet with resistance. He’s already said he may just let his original urologist treat him with ADT so that he wouldn’t be driving ”all over the county” in his already busy life. That leads me to think he still doesn’t understand what Stage 4 PCa means. 

I’ve told him stories that you’ve all shared of traveling great distances to get the latest and greatest care. I don’t want him to dismiss any clinical study participation based solely on an 80 mile round trip drive. I guess I’m thinking of suggesting the possibility of a study to him just so the idea starts processing. It truly felt like we were entering new territory walking into a translational research  building. Maybe my imagination  running away on me? Any suggested trials based on Gleason 10, local mets (unless the MRI showed something other scans didn’t) and newly on Casodex and getting first Lupron in2 days? You can tell me I’m overthinking things-not a new thing for me. Thanks, Mary

Tech70
Posts: 53
Joined: Nov 2017

But someone needs to impress upon your husband the seriousness of his condition.  An 80 mile round trip is nothing compared with the prospect on a one way trip from which no one returns.

As to the three hours the MRI took, this was about the same amount of time I was in the MRI facility in order to change, start the IV, etc and conduct the actual MRI.

fullmoon50's picture
fullmoon50
Posts: 40
Joined: Dec 2017

Thanks,Tech. I absolutely agree that the drive is well worth it. I’ve had several MRI”s before and none took 3 hours but cancer was never suspected for me. Even though my husband and I have known each other 40 years,  I can’t figure out his response to his diagnosis. I have to let it go and simply make myself available to support him in whatever way he needs. Apart from immediate family, he still doesn’t want to tell anyone. Maybe that will change once a treatment plan is fully in place.

fullmoon50's picture
fullmoon50
Posts: 40
Joined: Dec 2017

Hi, everyone. Just came from consulting with a radiation oncologist at UC-San Diego Moores Cancer Center. He used the good C word - curative! He sees nothing problematic in any of the scans that would preclude EBRT. There’s 2 nodes in right pelvis and one in the left that he will treat along with prostate. When I asked him about staging, he said the term they use is regional PCa but others would call it 4A. He explained that they don't even call it metastatic disease because treatment is curative in a case like my husband’s. While that may all be simply words, it does offer hope in a way that lumping it in with men who have distant metastatic disease doesn’t . 

Radiation will start in May after 60 days of ADT. Another note that surprised me is that the RO said in 60 days, ADT will have knocked out 90% of cancer. He explained that radiation is more effective the smaller its target is. Radiation will be 5 days a week for 8 weeks and will likely be curative.

I am happy that many of you recommended going to a cancer center. Everyone at Moores has been terrific and has inspired much confidence in my husband. They can even accommodate an evening schedule for radiation which was a great relief to Paul. He wants to continue to work and the doctors are encouraging him that it’s possible. 

Having a plan in place sure feels much better than the past 3 months of worrying and wondering!

MrsBerry
Posts: 102
Joined: Dec 2017

FullMoon, I have been following your posts, as my husband also has a recent Prostate Cancer Dx. I am glad you now have a treatment plan in place. My husband just started week two of EBRT. I have not found much discussion on this board for those who have radiation instead of surgery. However, we have already met a few fellows in the radiation oncology waiting room who are going thru the same thing.  Every day for 8 weeks sounds so daunting, but we are treating it as our job. 

Best wishes to you both as you move forward with this. You are in my thoughts. MrsBerry

VascodaGama's picture
VascodaGama
Posts: 2988
Joined: Nov 2010

This is a sound protocol. ADT will help the prime RT in assuring a better outcome. Surely it will cause symptoms and your husband needs to know what to expect and how to counter the effects. Fatigue and mood swings are typical at the beginning followed by sort of menopause symptoms due to hypogonadism. The radiation will later increase the effects but these will subside in time.

In my RT I was advised to drink 500ml of water 1 or 2 hours before the procedure in the intent of avoiding collateral damage. I hope that doctors do not try reducing the field of irradiation solo based on the image studies or guessed in their experiences as later one may not have another chance to radiate at the same place.

I believe that your husband is now less resistant to your opinions and more reliable to your advices. If it was me I would get a testosterone blood test before starting ADT to serve as base data (important in future developments)' and a DEXA scan to verify bone health.

Best wishes for a smooth treatment with fantastic outcomes.

VG

Subscribe to Comments for "Husband Newly Diagnosed"