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Posted 5/24/2014 11:16 AM (GMT -5)
My fiancée is 47, and no risk factors except being freakishly tall....

here are his stats so far.... It's not looking so great. Tuesday he gets lit up- whole body bone scans and CT of abdomen and pelvis with contrast. Meeting with the doc on Friday to discuss further steps and trying to arm ourselves with knowledge. Doc isn't one we will have long and will be switching. He actually said he prefers his patients get all their information from him and not read about it, etc!! Is trying to deny a second pathology opinion from Johns Hopkins but I will fight that and if need be just pay out of pocket.....

3/6/14 Urology apt with a NP DRE said to be normal sized, no nodules felt, firm prostate. Considered normal DRE in notes. Incomplete emptying of bladder over 500cc residual. Put on abx though UA was negative for everything except micro RBC

4/6/14 PSA 84.61

4/29/14 Cysto was negative- nothing found, no blockage or stricture. DRE positive for enlarged prostate and nodule felt (done by MD). Estimated to be double size it should be.

5/8/14 12 Biopsies done and TRUS

TRANSRECTAL ULTRASOUND REPORT

SONOGRAM MACHINE: B&K
Digital rectal exam: bulging and with crackling feel to it. Base
nodule noted.
PROSTATE ULTRASOUND:
 HYPOECHOIC LESIONS: scattered
STONES: None
PROSTATE BIOPSY
2 biopsies were obtained from the apex, mid gland and base
regions of the left and right prostate gland.
SEMINAL VESICLES
Normal
PROCEDURE COMMENTS:
PROSTATE VOLUME: 79 cm 3
TOTAL BIOPSIES SENT 13 (extra taken from apex on left to assure
good sampling)

ULTRASOUND DIAGNOSIS: benign prostate hyperplasia, abnormal
digital rectal exam, suspicious for prostate cancer

5/13/14 Biopsy results show cancer

REPORT, PATHOLOGY
 
TESTS:       Lv IV Nonderm Addl   (5)
             Lev IV Spec (1)
CLINICAL DIAGNOSIS / INFORMATION:
Elevated PSA 84.61.
SITE OF BIOPSY / SOURCE:
A) Prostate biopsy - Right base
B) Prostate biopsy - Right mid
C) Prostate biopsy - Right apex
D) Prostate biopsy - Left base
E) Prostate biopsy - Left mid
F) Prostate biopsy - Left apex
GROSS DEscriptION:
Received are six containers
A) The specimen is received in formalin and labeled right base. It
consists of two soft, light tan cylindrical portions of tissue
measuring up to 2.0 cm in length and each with an average diameter of
0.1 cm. Entirely submitted. One cassette.
B) The specimen is received in formalin and labeled right mid. It
consists of two soft, light tan cylindrical portions of tissue
measuring up to 1.5 cm in length and each with an average diameter of
0.1 cm. Entirely submitted. One cassette.
C) The specimen is received in formalin and labeled right apex. It
consists of two soft, light tan cylindrical portions of tissue
measuring up to 2.1 cm in length and each with an average diameter of
0.1 cm. Entirely submitted. One cassette.
D) The specimen is received in formalin and labeled left base. It
consists of 1.8 soft, light tan cylindrical portions of tissue
measuring up to One cm in length and each with an average diameter of
0.1 cm. Entirely submitted.  One cassette.
E) The specimen is received in formalin and labeled left mid. It
consists of two soft, light tan cylindrical portions of tissue
measuring up to 1.7 cm in length and each with an average diameter of
0.1 cm. Entirely submitted. One cassette.
F) The specimen is received in formalin and labeled left apex. It
consists of three soft, light tan cylindrical portions of tissue
measuring up to 1.4 cm in length and each with an average diameter of
0.1 cm. Entirely submitted. Two cassettes.
JL/et
-------------------------- FINAL DIAGNOSIS --------------------------
A) PROSTATE - RIGHT BASE:
- ADENOCARCINOMA OF THE PROSTATE, GLEASON SCORE 7 (4+3), INVOLVING 2
OF 2 CORES, SEEN IN 100% AND 90% OF THE INVOLVED CORES
B) PROSTATE - RIGHT MID:
- ADENOCARCINOMA OF THE PROSTATE, GLEASON SCORE 7 (4+3), INVOLVING 1
OF 2 CORES, SEEN IN 95% OF THE INVOLVED CORE
C) PROSTATE - RIGHT APEX:
- ADENOCARCINOMA OF THE PROSTATE, GLEASON SCORE 7 (4+3), INVOLVING 2
OF 2 CORES, SEEN IN 90% (DISCONTINUOUS) AND 80% (DISCONTINUOUS) OF
THE INVOLVED CORES
D) PROSTATE - LEFT BASE:
- ADENOCARCINOMA OF THE PROSTATE, GLEASON SCORE 8 (4+4), INVOLVING 2
OF 2 CORES, SEEN IN 100% AND 95% OF THE INVOLVED CORES
- PERINEURAL INVASION IS PRESENT
E) PROSTATE - LEFT MID:
- ADENOCARCINOMA OF THE PROSTATE, GLEASON SCORE 8 (4+4), INVOLVING 2
OF 2 CORES, SEEN IN 100% AND 90% OF THE INVOLVED CORES
F) PROSTATE - LEFT APEX:
- ADENOCARCINOMA OF THE PROSTATE, GLEASON SCORE 8 (4+4), INVOLVING 3
OF 3 CORES, SEEN IN 75%, 75%, AND 50% OF THE INVOLVED CORES
 
 
 
 

Post Edited (kukukajoo) : 5/28/2014 5:26:03 AM (GMT-6)

Posted 5/24/2014 11:44 AM (GMT -5)
Hi. You have came to the right place. I am also new to this with my husband. He was diagnosed April 1, 2014, and do not feel at all capable to giving you any advice. Just wanted to let you know that this is a great group, and those who have been at this for a long time will respond soon, and have some valuable information for you.

I agree with you, switch out any doctor that doesn't want you to become informed, or have second, and sometimes third opinions.

I will be rooting for you and your fiance.
Deanna
Posted 5/24/2014 12:01 PM (GMT -5)
Hi Deanna!

Sorry we both are in this little club, but maybe we can be of support to each other. has hubby had surgery yet? any more details?

The doc he is seeing is a jerk if you ask me, there is a bit more to this as I was accused of accessing results at work (I am a nurse for same place just a different location) even though it was accessed on the patient portal through patient login and I proved that (was forced to really). They apparently didn't realize that the biopsy would result under past visit information before being reviewed by a MD. So the lovely doc had time to email my boss and higher ups, but not ONCE has had the courtesy to call my man. The only HIPPA violation that occurred is that now my boss and others know he has cancer because of the doc.... We just relocated 1300 miles to this new job too and I am literally days out of orientation/probationary period. If I had any other boss that would not be good and it still may give me trouble later on when I need time off for this and I don't qualify for FMLA yet as I haven't been there a year..... Without this job he has no insurance and right now (and probably for foreseeable future) I am the only income. Like we need to be stressing about that too right now!!

Sorry needed to vent that out.... Because of that and his attitude about everything, we need to get another doc soon. I suppose this visit to discuss scans and biopsies will be okay for now but once we try to figure out next steps we will want someone who isn't so egocentric.

 

Posted 5/24/2014 12:12 PM (GMT -5)
I can see why you're in shock -- it is very rare to receive a "high risk" diagnosis at the age of only 47. The tallness may have something to do with it, as it has been found to be associated with prostate cancer. Researchers are looking at somatostatin, the growth hormone antagonist, as a possible part of the treatment someday.

You are quite right to get a second opinion on the biopsy slides. However, with that much cancer identified, he is likely to remain at high risk. You'll know a lot more after the CT and bone scans.

The treatment for high risk patients is highly controversial and is evolving. I hope both of you will be able to take this one day at a time.

Choice of a good doctor is very important now. You may want a team consisting of a urologist, a radiation oncologist and a urologic oncologist. Many of the best doctors are at tertiary cancer care facilities, but some are in private practice. If you want to share with us where you are and your ability to travel, we might have some recommendations.

- Allen
Posted 5/24/2014 12:14 PM (GMT -5)
Welcome to HW. Sorry you need to be here but you'll find great folks and great info here.

Hate to say but those aren't the best numbers in the world. Still, there is every chance of treatment and keeping the best at bay for years and years. We've had guys here with Gleason 9 who lived a long, long time after DX - well more than few that are still kicking around. It won't be fun to go through and normal will change but there a bunch that can be done.

First thing, get a medical team you can trust and that listens to you. Given the high PSA you want to find a medical oncologist who specializes in PC. The second opinion from Hopkins is a great idea. Some of the folks here can recommend some good doctors to check out.

As I am sure you know, having a good team behind you can make all the difference.

Keep us updated on your progress, ask questions or just vent. We're good listeners if venting is required.
Hang in there,
Andrew
Posted 5/24/2014 12:33 PM (GMT -5)
Thank you for the responses. We know its bad and going to stay bad, preparing for the worst but hoping for the best of course. We already know its spread, just not sure where (see below).

We are in Atlanta and very new. Were actually supposed to do the big move of all our stuff this past week (postponed as my man got bad infection and has been having very little energy and always tired).

We are at the moment fairly limited by insurance to where we can go and dependent on this Urologist to make outside referrals, which I had to nearly beg him to even submit the one for JH for review as he didn't see need. Well let's see- from what I am reading the likelihood of this actually being a 9 or 10 is better than it getting downgraded and given the amount of involvement surgery may not be a good option but if 7 or 8 yes it may be still an option.

We may decide to just elope so we can have a "qualifying event" that would allow us to choose a different, better policy that will give him more choices on doctors, etc. We are consulting with attorneys, financial consultants and all that now to figure out what is going to be best at this point. If this won't matter we will just wait and plan the wedding properly sometime in the future.

Oh, I also forgot to add that although the US report doesn't say it, its clear the cancer is mets, we just don't know how far and where yet..... This is very clear in the two pics he gave us. Showed other docs who said same thing.

Travel is possible. We want the best options of course, and may be limited by finances. I may need a second job to cover expenses of this but will do whatever it takes. I make enough to be single income and be comfortable but not a lot left over at the end of the month as still have one in college.
Posted 5/24/2014 12:33 PM (GMT -5)
Dear Kuku...may I call you kuku...well, maybe not!

Anyway, welcome to HW but sorry you have to be here. Your fiancee's numbers are not great but they are far from the worst. There is a good chance of cure or arrest and you should both have that hope. I see you are well on your way to getting educated which is really important with this disease. Much of the decision making will be done by the two of you and you really want to know your stuff. You might start with the sticky thread at the top of our forum: www.healingwell.com/community/default.aspx?f=35&m=2652250

Unfortunately, not all docs are created the same and yours sounds like a first class jerk. I went to a number of physicians during my search for an answer and found a WIDE variety of expertise and bedside manners.

There are a number of our members who have real expertise - not physicians but really informed laypeople. They will all be happy to help as you go through this journey.

Best of luck.

Jim
Posted 5/24/2014 12:56 PM (GMT -5)
Hi Jim,

It's my understanding that there isn't chance of cure but hope for control of it through the varying treatments with possible excellent life expectancy left. Its definitely outside the prostate already..... Is this incorrect? Will it depend on the CT and Bone scans? I am thinking a MRI would be better?

So far only ones on team is PCP (who we love and trust), and the Uro (and now you all on here!). We have name of another uro but haven't had time to get appts made since Paul won't be back in state until Monday probably (we flew up to attend my daughters college graduation and were planning to drive moving truck with our things down this past Tuesday but Paul hasn't been up to it. I flew back to work. He is still slowly packing his shop up and has to be on road no later than tomorrow to be at tests scheduled for Tuesday we don't want to have to reschedule). The cancer is already making him incredibly weak and no energy- he is needing naps and can't even lift things. Living in a near empty house here for now....

This has changed so much of our lives already.

We both have read the "start here" thread and are so thankful of the information in it. There has been other info we found on here as well that is helpful too, not to mention the members just seem amazing on here. That is what prompted me to join.

Docs are not equal at all. In my own personal life I live with a rare autoimmune disease and took years to properly diagnose and treat despite there being definitive tests available. Its now in control thankfully but I go to docs at Johns Hopkins now and also in London. I stay current in research and involved in researching it with colleagues as well as an outspoken international advocate. Between my personal experience and my experience as an RN who worked in the operating room, and then in ER I have seen enough to really pay attention. Good bedside manner doesn't mean good doc and vice versa.... BUT we do want one who can see past his ego. I say if you are going to be egotistical then stick to the research aspect of medicine and get the hell away from patients. Then they can still see your name in print and travel the world too.

I am compiling a big list of questions and by golly if that doc wants us to get all our info from him he best be prepared to spend an entire day educating us! I still can't imagine someone that thinks like that..... shaking my head..... I can just see him getting antsy in the OR and running late and just deciding to cut the nerves instead of sparing them because this is an inconvenience to him to take the time to at least try to do a good job for the patient!

PS calling me kuku is fine. If the shoe fits..... :)
Posted 5/24/2014 1:52 PM (GMT -5)
Hi kukukajoo,

If you already know that it has metastasized, that changes your options. But it depends where it has metastasized to, and you won't know that until the bone scan.

One option to be discussed is whether to go ahead and remove the prostate anyway. This is called "de-bulking." It is not curative with metastatic disease, but it may slow it down somewhat, and will probably relieve the urinary retention he is suffering from. On the other hand, it carries its own risks of urinary incontinence, ED, etc. It sounds like you may be into research, so here's the study:

Might Men Diagnosed with Metastatic Prostate Cancer Benefit from Definitive Treatment of the Primary Tumor?

If it is locoregionally contained (all in the pelvic area), combination brachytherapy and external beam radiation to the whole pelvis may be curative. Radiotherapy Clinics of Georgia in Atlanta is known for this kind of therapy. However, with a 79 cc prostate and urinary retention, he is not a good candidate for LDR brachytherapy. Sometimes they give hormone therapy first for several months to shrink the prostate, but even so, with that large a tumor mass, the chances of high grade urinary retention would be very high. HDR brachy can be done even on large prostates, but again, urinary retention may be an issue. Sometimes they can fix it with a TURP. This starts to get very complicated.

Recently it has been discovered that starting Taxotere (a kind of chemo) together with ADT (hormone therapy) increases survival with metastatic disease. You can read about it here:

increased survival in men with metastatic prostate cancer who receive chemotherapy when starting hormone therapy

The Gleason 8 vs 9 doesn't matter so much (all Gleason scores 8-10 are "high risk"), but Epstein's trained eye may be able to identify if there are any unusual kinds of prostate cancer (e.g., neuroendocrine) that may warrant special treatment.

The only tertiary care center I'm aware of in the Atlanta area would be at Emory University. I'm afraid I don't know the doctors there.

- Allen
Posted 5/24/2014 2:22 PM (GMT -5)
Allen, thanks!!

I forgot to mention that the prostate itself isn't causing the retention- there is no stricture at this point (surprisingly) and bladder was fine. They are pretty certain its neurogenic and that the nerves leading off the spine are affected by mets. If I remember correctly its L5-S1 where the bladder nerves come off the spine. This is what led to the biopsy so soon after the negative cysto he jumped on doing that right away.

Sorry for not mentioning- trying to process this and arm myself with knowledge is daunting. Its like nursing school on steroids but his life may depend on this.

I am painfully aware of what this all means, much more than he is. He had an Lspine xray done which just showed widespread arthritis as cause of the pains in back and no mets mentioned. This provided him great relief of his anxiety and I haven't let him in on the fact it could still very well be present in spine and xray didn't show sacrum either.... Sometimes I hate knowing this and keeping some of the realities from him and I hate not having someone to talk to about all that.

One worry is brain involvement but that is a stretch considering its so rare but he is getting confused, forgetful -left a burner on stove on more than once (and we have gas!), lost his phone, got upset when he thought I was reciting a phone number to him in wrong grouping sequence and argued with me about it- (ie 999-999-9999 being usual sequence but he said I gave as 99-9999-9999 or something like that), keeps hearing wrong things said and confusing stuff sometimes nonsensical or talking about something totally different than subject at hand...... Hoping its just from stress of this all because its all so unlike him to be like that but does have me worried.
Posted 5/24/2014 2:45 PM (GMT -5)
I agree that it's hard to know how much is from the cancer and how much is anxiety/depression-related. I am a big believer in psychotherapy for cancer patients and caregivers. I found this very useful myself, especially practicing Mindfulness. I also participate in prostate cancer support groups sponsored by the Cancer Support Community. I know there's a chapter in Atlanta.

- Allen
Posted 5/24/2014 3:20 PM (GMT -5)
Welcome kukukajoo. Sorry you found the need to be here.

There are lots of experienced members who will steer you in the right direction. Tall Allen, certainly being among the best!

My husband was diagnosed at 49. He would have probably been diagnosed at 42, if not for an incompetent doctor.

Husband had mets to bladder and lymph node involvement, but never had any bone mets show up.

He was not a candidate for surgery or radiation until hormone therapy debulked the tumor. After 4 months of hormone therapy, he had 3 rounds of Taxotere. The tumor had then shrunk enough for him to have IMRT 8 weeks post Taxotere. Surgery would have required removing his bladder and he is sort of fondly attached to it, so he went with radiation for consolidation of the tumor. He was also at higher risk for permanent ED with surgery.

He is still on Lupron, Casodex, and Zytiga. His oncologist is considering removing him from all medications in September. He has had an undetectable PSA for approximately 2 years.

While hormone therapy zaps his libido, Cialis helps his plumbing work just fine. We have high hopes that once he is off of hormone therapy and his testosterone returns, that our new normal will be back to our old normal. :)

He was treated at MD Anderson in Houston, TX. The Radiation Oncologist, a cocky little man, was shooting for a cure. We weren't there to make friends, so his skill was more important than his personality.

If you would like to reach out to another female, please feel free to email me. If you click on my name, it will show you my email address.

Wishing you both much success in this journey.
Posted 5/24/2014 5:18 PM (GMT -5)
Thanks. Sent you an email, may be in your spam.....
Posted 5/24/2014 6:43 PM (GMT -5)
kukukajoo,

It is highly likely with a psa of 88, high gleason scores and a high volume of cancer on the biopsy you are dealing with a mastastaizied cancer. It is best to get a specialized prostate cancer oncologist on your team and dump his current doctor. Dr Snuffy Myers in Earlysville VA is probably the best in your area
Posted 5/24/2014 7:03 PM (GMT -5)
Hello Kukukajoo,

Welcome to the forum. Can't add much to the already excellent advice you have been given. I will echo Tall Allen's idea that your guy's odd behavior and confusion are most easily explained by the stress of diagnosis.
Posted 5/24/2014 8:08 PM (GMT -5)
Thank you all so much.

Ohhhh John :( I soooo know that its probably all over his body. Even his cough lately scares me. I know probably all too well... and he isn't so aware yet..... It makes me tear up to see it every time in black and white. Have known since the PSA came back it wasn't BPH or minor like the NP tried to say- a gut feeling- and one he had too...... Being an RN puts me at a level of maybe knowing too much which I really hate to be honest, but on the other hand my family and friends know Paul has the best advocate on his side.

I have medical problems I have had to fight to get diagnosed despite it nearly killing me every few years since I was in the 5th grade. I could write a book about my life. I work hard at saying healthy and I am so scared this will make me flare which is the last thing I need right now.

Now I see that my battles have all prepared me to be there for Paul. Guns are locked and loaded and I was raised by a Marine so am a sharpshooter!! To find the best care to give him a fighting chance in this. Trust me, this doc won't be ours for long. He wont do referrals until he sees us on the 30th. Maybe will try to not do them then too. BUT I work for the company and am arming myself with everything I need to appeal his decisions and to go over his head. Other than insisting on the Hopkins pathology second opinion, I have kept a bit quiet as Paul isn't back until either tomorrow or Monday depending on how much driving he gets in feeling the way he does. I can also ask our PCP who I work with to ask for referrals and if need be we will get married right away to be able to change to a better insurance option.

I worry me fighting the company may affect my job and its a valid fear as I will turn into a huge ***** if I have to fight them on things. That is the LAST thing we need at the moment. Paul is worried about that too and asked me not to even push the second pathology look but I didn't listen. My fear of losing him because I didn't try hard enough or fight for the one little thing that could make a difference is bigger.

This next week will be a flash- so much info coming at warp speed, trying to sort through the cancer lingo, find the best docs, navigate insurance and pull money out of a magic hat all at once. Mind you our home is still nearly empty here and everything sitting in storage now in NH. All friends are up there save a couple people here I know a little (not close friends). He knows nobody here.... I can't imagine how alone he feels at times having to deal with this, and I pray I am strong enough to be the rock he needs right now.

What scares me is says he feels he isn't long for this earth and in my practice I have learned patients are usually right.....
Posted 5/24/2014 8:12 PM (GMT -5)
PS sorry for the novels- it just feels so good to get this out and to have people who know the same language and fears and hopes... I am so grateful you are all on here!

The advice you have given so far has been invaluable and will save us a huge bundle of red tape, time and BS. I am certain of that.

This doc, shaking my head, I can't even imagine him thinking he and our medical team should be the only sources of info. That tells me he isn't a good doc and doesn't like to be second guessed. This isn't some militaristic "because I said so" crap- this is Paul's life!!
Posted 5/25/2014 10:41 AM (GMT -5)
Hi Kukukajoo,

Without foreseeing how his health would change in this way, it seems Paul had the good foresight to ensure an A1, him first, medical team member would always be at his side, in the form of a feisty nurse and bride to be. Good for him! And good for you. As much as you must be pained by what you know, I imagine it feels, dare I say good? to be armed in this battle for your mans life and well being.

I too was aware and very concerned about the possibility of my loved one's nerves not being spared simply because of the surgeon's prerogative, nonchalant attitude or their being hungover, sloppy, etc., etc... but was not able to ride shotgun in that conversation with his doctors they way I wanted to be. Not that it would have made a difference if the cancer's location made nerve removal necessary. 3 days post surgery, I'm still waiting sans stats, surgery results etc. to learn how things stand. All I know (medically) is it was done and he's home.

My my, you do have a lot going on right now. I'm just reading the implications of the HIPPA violations and your new job. Wow. I'm so glad you are here. Your mental wellness is of so much importance. Patients you serve, your fellow nursing staff and a future hubby bound for bad days (with a need for generous tlc from a warrior minded woman) are all looking to you for support. Thankfully HW is here to support you (and your hubby, should he be inclined to join). I am hoping for the best for both of you.
Posted 5/25/2014 11:09 AM (GMT -5)
Thank you Libi!

I do hope you get some answers soon from your man, and that the surgery went best case scenario for him. I hate waiting.... with a passion!

Yep, lots in our lives right now. And you remember that scene from Terms of Endearment with Shirley Mclaine at the nurses station losing her crap about her daughter's pain not being well controlled by the flippant nurses? Well that's a gonna be me with a little Linda Blair tossed in if need be. Hands down I will arm myself with knowledge, then fight the good fight for him. If I can't cure this rogue walnut then next best thing I can do is find the best person in the world who can and arm ourselves with knowledge every step of the way so we know what to expect and that he gets the best possible outcome, whatever that may be.

I am now beginning to tell friends and family. Kind of pissed about the "oh that doesn't kill men" attitude. I saw a thread somewhere on here about that... even a nurse friend thought that!! I have heard too many "Well my uncle had that at 86 and that didn't kill him" attitudes. Do I want to hear success stories- of course I do. I love when I find a thread of someone under 50 and they were dx 16 years ago- it gives me great hope but I can't take the attitude that PC is no more dangerous than a darn wart.
Posted 5/25/2014 12:22 PM (GMT -5)
kukukajoo -

I've been following your posts with interest and I have to say that you have an excellent writing style. You both express your feelings with a wonderful clarity, and you leave readers with a perfect understanding of what's going on with you and your fiance. He is fortunate indeed to have you in his corner.

I was also very amused by your reference to the scene in Terms of Endearment when Shirley MacLaine as the mother goes ballistic when the nurses aren't giving her daughter the pain shot on time. Here it is:

www.youtube.com/watch?v=plqzeUB9B-w

To judge from your posts, I bet you'd give that unsympathetic doctor you mention that and more if he slipped up like that!

Welcome to our forum, and do keep us informed on how things go.

Good luck!
Posted 5/25/2014 1:38 PM (GMT -5)
Thank you 81, that is of very nice of you to say. I have blogged a lot and wrote about my own illness for awareness but stopped some time ago when I got seriously ill. It was Paul who stood by me and took care of me. Many days I needed help making it from the bed to the bathroom ten feet away. He would have wiped my ass had I needed that too. That man deserves to live a long and happy life, not continually facing tragedy and loss.... His parents his wife of over 20 years, his best friend ever.....

He finally gets life right and stops working 80 hour weeks and starts living....

and then this...

I won't say I owe him this, as I don't believe for a second someone does things like that expecting something in return or payment back... but for certain there is no hesitation in my voice or my resolve. That waivering in my voice is my throat crackling with me trying not to cry is all. I am just doing what he needs.
Posted 5/25/2014 3:13 PM (GMT -5)
YES! Yes I do. Love Shirley, Terms of Endearment (really appreciating even the title of that movie right now) right along with Firestarter , and my favorite go to movie of all time when I need to kick a certain state of mind into high gear: Long Kiss Goodnight with my girl Geena Davis

I have a huge smile on my face, thinking about you. But, also a pit in my stomach having just read Paul feels he's not long for this earth. The timing for all that's happening, and cancer itself is ****ing awful.

But, we live and push on. Thank you for your hope on my behalf. I just keep reminding myself patience is not a virtue but something love and circumstance will force a person to develop. For you, I am wondering if (yes, even in the middle of all of this) you should schedule an appointment with your own doctor. Your medical history sounds like a pretty serious concern and one that could be mentally mitigated by you knowing how close you are to a flare up. If not at all, you could take that off your worry list. If close or beginning, maybe you can begin treatment that would keep a full flare up at bay. From what I gather, you're it. With no one to tap out and trade places with who will attend to Paul's needs in the way you would.

Also, I am wondering whether you would consider assembling a care squad of family members and or friends (yours and Paul's) who respond to your news with balanced, concerned and action minded caring. Maybe 2 to 5 people who have the kind of fortitude, reliability, desire and time to help if called upon to do so. These folks could help manage the manageable while you focus on the seemingly impossible. Drives to/ accompaniment at appointments (complete with instructions on what to ask/note if there's ever a time you can't make it), being on site for utility company turn ons or installations, groceries, laundry, social interaction or simple welfare checks etc. As much, as little and stopped completely as need be. Always directed by you and Paul.

Aside from the surgeons actions, I was also very concerned about who would care for Stix (my loved one) just after rp. He's it, for a lot of people, both professionally and on the personal front. He likes it that way and was very slow letting people he had to tell know about what was going on - absolutely hating the ideas of pity and I think, from some of his comments under his breath, apathy. I really wish I could be closer but, am content loving him from where I am. For now.

Pre dx, instead of his name in my phone, I had him saved as Love, Hug and Kiss. That does wonders for me and my morale. If you get that "care squad" together perhaps, you can add that phrase in front of their names in your phone's contact list. Your new contact list would look something like this:

Al Jacobson
Brad Pitt (couldn't resist since we were talking movies earlier :))
Care Squad Annie Holton
Care Squad Frank Myers
Care Squad Kelly Cooper
Care Squad Mom
Dave Johnson etc.

Might seem like a silly waste of time initially but, at the press of the letter c, you or someone navigating your phone, could easily get to your second line of offense.

Memorial Day potluck at my mother's is approaching. I have to go acquire my store-bought contribution lol. Wish the majority of this message wasn't in blue. Still learning how to use codes and such here.

Wishing you well as you give em you know what.
Posted 5/26/2014 9:11 PM (GMT -5)
Quick note about comments on brain involvement and your concern about changes you see... If Paul has bone mets and they involve the skull or higher cervical spine, be careful. If he exhibits any neuro symptoms with the bone mets, get a brain MRI. While rare (Marks oncol had not had a PC patient with brain mets) but finally ordered scan after pressure from us to find out the cause of the increasing symptoms.

Hope this week relieves some of the pressure as you start to get answers to your questions and find a medical team to guide you.

Dreamer 44 - Pat
Posted 5/26/2014 10:30 PM (GMT -5)
Sorry your financee and you are going through this at such a young age.

Have you thought about Emory in your hometown of Atlanta. They are a NCI (national cancer institute) National Cancer Centers.
Posted 5/27/2014 7:06 AM (GMT -5)
Thanks to you all, been slowly gathering resources and information to arm ourselves.

Libi- we don't know anyone here in Atlanta. That part sucks bad. I did find some ride resources that may come in handy later on and even some places that help with travel and lodging if he goes elsewhere for treatment or consultations. Still also looking into our insurance coverage and what limitations that puts on us. Even though the apt Friday is with MD we most likely won't keep on the team we should get some good information from him. Still on the fence about how much of Friday to take off from work to go to that apt and then to discuss... Do I take whole day and spend morning on the phone to places I can't call at work, just the apt time and return to work, or will I be too broody afterwards deep in thoughts about the information we just received to give good attention to my patients and to really focus on work.... I just don't know yet....

He is eagerly awaiting starting to drink the chalk/latex paint tasting liquid. Found out MD also ordered another PSA when they do the Creatinine for the CT contrast today. He will have a long boring day I am sure. Lots of waiting in between.

Montee- where in GA are you? Emory may be one we look at for sure. Just waiting for these tests to result really. Gathering info and preparing for what's next.

How could Dana Farber have been so wrong about surgery or not? What type of surgery did you have and was it robotic, open, etc. Also where- Emory? Were they able to spare nerves? How many positive cores did you have?
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