WANT TO FEEL WELL AGAIN - WORRIED & PAIN

I shouldn't even be online since I have touch of OCD and remain anxious and distraught and was told by relatives to NOT do any research. 61 y.o just relocate away from family and now in Fla. Medical care quite different down here than up North. But, health issues before I arrived here and urologists checked psa and just told be bph. Well suffered through that for several years and PSA was .9 then 1.0 - 1.7 1.9 1.9 and lastly 1.8

I am also BRCA 1 carrier - so slight higher risk. I know lots of details, but I was exhausted from urinary frequency/urgency and logged output - running to the bathroom 17x a night and seemingly always voiding 2-6 oz...even if it was within 10 mins of the last trip. For some reason, my bladder felt emptied but within next 5-10 mins, full again. They did the usual Osco meter or something that measured the flow and ultrasound of bladder after urinating at doctor's office. I also usually had blood in urine, but they never worried because it was "trace" or at the limit of the range threshold to do anything. Well alone St pat's day, I was crazy symptoms, felt like piece of glass/sand in urethra so drove to ED at hospital who gave me Flomax, and refer back to urologist. He did cystoscope and found bladder o.k. will check psa 6 months. Meanwhile, I went to diff urologist and he gave me Augmentin telling me I must have prostatis which I took 3 weeks. He had good bedside manner so I pleaded with him to give me MRI prostate which they did. It was done 5/22 and I just received results 6/2 at 4pm. Seems they DO see a left nodule prostate so require biopsy -MRI fusion biopsy or MRI guided biopsy but they don't do it here so I have to figure out best place to do this. I also have been telling them I have had lower back pain that has moved all around to my chest cavitiy, sternum, even shins on my legs the past 9 weeks. They want refer me to back and spine center for tests? I just had CT Scan done and colonoscopy to rule out other things. I haven't slept a full night in 6 months and there has still been no help since they haven't adequately diagnosed any condition yet. I'm back and forth to health store for supplements and regular doctor just gave me Zoloft for anxiety since I'm a mess. I'm also trying to use subliminal message training and law of attraction theories to gain some relief. I hate the waiting.....Thanks for listening.

44 Replies

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  • Unfortunately it is very easy to worry to worry. Lord knows I do. I will not tell you not to worry. However, perhaps I can help by telling you how I use worry to my advantage. For me, the key is how I focus my worry. Please know that there is a difference between worry and becoming emotional. The key for me is to do research on my very form of cancer as a research project (I am a retired chemist after all). Yes it suck when the first articles I read said I only had a 23% cancer of making it for two years. To be honest, that sucked. However I did not become emotional (OK, yes I was emotional, but after a good cry, I pushed it back and got on with my life.) Additional research showed dramatically increased that value. Part of it was helping my doctors with my treatment. Not demanding the latest and greatest treatments, but discussing with them the positives and negatives. I WILL NOT let my worry become so all inclusive to the point that it becomes emotional. JUST AS IMPORTANT, I know when to put that worry away. We all only have so much time here, and I refuse to let worry prevent me from enjoying life. I also am very careful on what I read on the internet. Let's face it, about 80% of it is junk. Then you must treat the remaining 20% with great care.

    Please know that we are al pulling for you! We are on your side!

  • Thank you. I have difficulty focusing for more than 1 minute and I'm back to this topic. And yes, I am BOTH emotional and a worrier. Yes, internet is overwhelming and every individual is different. I watched relatives go through chemo and I know most doctors would never have it themselves, yet they are required to promote it. It's rough, as some of you know, to try to focus elsewhere when the symptoms continually remind you every few seconds. All I seem to do is wait, wait, wait for appointments and then follow-ups and results. It's been over 6 months since I started with a urologist here in Florida and before that it was 3-4 years in Massachusetts. I trusted the doctors because they were supposed to be the "experts."

  • Prior to current mets requiring Foley I slept quite well with condom catheter and collection bag. Diapers worn rest of the time. Hope this helps

  • Burnett1948. I like Dr_Who's reply. I have similar PSA's to you: presently doubling at 18 mths.I have kept myself informed and I enjoy the support of the knowledge of fellow members of Health Unlocked. I had a problem with urinary incontinence and had a Sling inserted. I stopped spending money on expensive alternative medicines after I proved Golden milk (internet recipe) plus Green tea, broccoli and pomegranate juice slowed the rise of my PSA. I have found that mindfulness mediation helps. I know we are all different in our PC journey and it has taken time for me to come to terms with the psychology but with professional help I have become more positive. My thinking is "I'm fighting a good fight and I don't want to let myself down".

  • You are not alone Rickym1. Are any of us not a mess ;) Maybe some more than others. It's so difficult to have an illness without worrying and being ocd/depressiom/anxiety etc. I wouldn't survive without something to calm me. I'm so glad you're fighting for your health. I hope all things go well and your medicine should help ;)

    Most sincere,

    Jackie

  • Thanks. It's not easy for anyone, and with me in a new location, I am grateful for a few friends who have referred specialists and it takes me a while to research their background and reviews. No one listens when I tell them I have increasing chronic back/bone pain so that keeps me up in addition to urinating all night. I have tried law of attraction and alternative meds for a few years now, There's no way for me to put this whole matter out of my mind. I need some direction and hope from my doctor.

  • p.s.

    Soak up some of that beautiful sunshine. It did wonders for me when we were there for lgs radiation but my vacation ;)

  • I don't have any definitive answers for you, rickym1, but I totally empathize with the state of unrest over your health and medical concerns. I often feel like I need someone to advocate for me, but alas I am for the most part all alone. My fairly profound anxiety and emotional disorders definitely make living life much more challenging. Navigating medical care can be bewildering. I can see that you know that all too well. It is a cruel reality when doing that is the last thing we feel like we can handle when we are so ill to begin with. I'm wondering if the equivalents of the Councils on Aging in Florida may have any services that could assist you in any way. I understand that 60 is the eligibile age for some of their services (at least in the Northeast). It might be something to check out. Like Burnett1948, mindfulness has helped me a great deal with health related uncertainties I've faced. I honestly don't even meditate much. It's more just the concept of mindfulness that clicked with me. Simply allowing myself to be okay with the state of anxiety that I am in at any given time has helped me a great deal. I spent a lifetime believing it was weak or "wrong" to be anxious and I therefore used up a ton of energy trying to fight it off. Accepting it without judgment can be very calming. Sounds unbelievable that something so simple could help, but it did help me. And believe me, I am treatment resistant when it comes to psychological challenges. But I mostly just wanted to tell you that I feel for what you're going through and that I'm sorry you are hurting. Sooner rather then later, it is my hope that you get the medical answers and find the peace of mind that you need and deserve.

  • Thanks....Mindfulness brings me to ongoing skeletal pain that plagues me. Instead of waiting for dx, I should perhaps research best hospitals: would you say John Hopkins or MD Anderson or Mass General in Boston? Florida is rather behind when it comes to medical ratings. Would it be premature to contact them since they have been so slow here in any diagnosis for me? I'm feeling like I don't have much time left. Then I read other posts, and find many guys still on treatments after 3,6 etc years? I think I will do well if I can speak to someone who can provide some hope and direction.

  • I appreciate your point about how you experience mindfulness. As for hospitals, I'd be heavily biased in favor of Mass General, so I can't give you an objective opinion. I couldn't really give you an overly valid opinion on hospitals anyway, frankly. I had little choice but to stay in my somewhat rural local area for my treatment. Without a diagnosis, you of course have no treatment plan, so might it be premature for hospital shopping? On the other hand, gathering information might be good. I can only imagine how agonizing the waiting must be for you. It would be for anyone. Your having GAD with features of OCD (or comorbid GAD and OCD, if that's the case) certainly adds to these challenges, but it seems to me you may be managing pretty darn well, considering. We humans are remarkably resilient. For me, being proactive like you are describing can be beneficial, but only you can decide what works for you. Trust your instincts, I'd suggest. No one knows you better than you do. That, by the way, includes family members, other members of this forum (e.g. me) and even doctors and hospitals. I definitely wish I had advice on how to get the medical establishment off high center for you, but alas I can't think of anything you aren't probably already doing. Up to a certain point, it might be good to repeatly describe to your providers how intense your pain and anxiety are; also to not allow them to forget for even a moment about your BRCA1 mutation. You have my best wishes.

  • Mass General is big name up North and I do have relatives fairly close. They have overall good ratings but of course, my focus is on my specific challenge of which usually it's a toss between MD Anderson or Hopkins from what I read? Yes, like everything else, most won't discuss the matter without a concrete dx and then more time for scheduling, obtaining copies of records, insurance...all before they agree to see...more waiting...

  • More fun and games, right? Hopefully, you can get your biopsy scheduled tomorrow or Tuesday.

  • Well, let me help you tick one thing off the list. One does not have a touch of OCD. One has it, or not. If you have it, you will know it. And it will profoundly affect your life. What you wrote above foes not sound like OCD. However, I'm not a medical professional. If you think you have OCD, seek treatment for it. If not, drive on.

  • Well, counselor told me that once and added general anxiety disorder as well. Now I'm sure I can add depression, but Zoloft starting a few days ago 50mg hopefully does something. Thanks

  • Sure, if that's how you were diagnosed, I would certainly not comment otherwise. I'm sure that there are many grades of OCD, some of which are quite debilitating. Some folks can barely get by in life, when their OCD becomes all-consuming. But now it's become common for some to refer to themselves as OCD, without any knowledge of what this terrible condition entails. And that does a disservice to some people who are really suffering. If you have a diagnosis, then you aren't among those who misappropriate the term.

    Take it from one who knows first-hand.

  • About a year ago I had symptoms that may (or may not) have been like yours. I was urinating every half hour or even less, experiencing some pain while urinating, couldn't sleep as a result, and had pain in my side. It seems to have been caused by a combination of a kidney stone and a urinary tract infection (UTI). The UTI was possibly a consequence of the stone. The stone was diagnosed by a CT scan, and the UTI was diagnosed by a urinalysis that showed my urine was full of both red and white blood cells. The cure was a combination of tamulosin (Flomax) and antibiotic. After a few days on the tamulosin I passed the stone, and the UTI healed up during the same period.

    I suffered with all this for about 10 days. I can only imagine what you've been going through with this for many months.

    I know you had a CT scan and presume you've already had one or more urine tests but, just in case, I thought I should mention it.

    Best of luck.

    Alan

  • Thanks Ive had issues for years and they just told me bph...like your case, they've tried all that with me....since Dec 2016...and recent MRI prostate 5/22 shows left nodule problem. I'm trying to find out now where to schedule an MRI guided biopsy. Urologist suggest MRI fusion biopsy but I read MRI guided biopsy more accurate....just received those MRI results Friday 6/2 so my anxiety off the charts, increasing skeletal pain and ongoing urination. I take melatonin but may catch sleep 2 hrs then I'm awake worrying or urinating still very uncomfortable. I may try OTC pain meds soon for bone pain. I'm hoping I hear from someone Monday.

  • I'm glad they tested for all that.

    If you can get to Tampa, Florida there's an NCI Designated Cancer Center there at the University of South Florida. They do a lot of research there and may be a good place to get your MRI guided biopsy. Here are the details:

    Moffitt Cancer Center

    Tampa, Florida

    Comprehensive Cancer Center

    Thomas Sellers, Ph.D., M.P.H.

    Center Director

    Executive Vice President

    Moffitt Cancer Center

    12902 Magnolia Drive

    MCC-CEO

    Tampa, Florida 33612

    Main: (813) 745-4673 (813-745-HOPE)

    New Patient/Physician Referral: 1-888-860-2778

    Good luck.

    Alan

  • Thank you....Will check with them tomorrow...

  • One more thing. MRI is a great technology but ultrasound (the traditional method of guiding biopsies) is pretty good too and has advanced a lot in the last 10 years. I had an MRI guided HDR brachytherapy as part of a clinical trial in 2003. Some years later the doctor who conducted the trial told me that it was a success, but ultrasound had improved enough over the years that the MRI they were using was not much better than the ultrasound.

    As with anything else, don't forget to evaluate the doctors! I'd rather have a smart doctor doing an ultrasound guided biopsy than a dumb one using MRI.

    Alan

  • it's hard to find some sort of balance, but yes, I agree.

  • I was wondering if bph was at play. I suffered from that and had TURP surgery. If they diagnosed bph what did they recommend for it -- just pills like flomax?

  • Hi- glad someone is finally talking about the anxiety part. I also have OCD/anxiety/depression. Also, frequent ruination, at night despite having prostate removed. Since I received my cancer diagnosis in oct 2009, I have broken the problem into 2 parts, doing the best behavioral actions after research regarding diagnosis and treatment and then mobilizing all resources simultaneously to deal with the psychological component.

    If I understand, you have a rising psa, a left nodule issuer per the MRI and pain starting with back and radiating or also in other areas. Assuming not psychosomatic origins, the pain , especially starting in spinal area warrant clearly get good diagnosis. A guided MRI multiparametric scan biopsy seems clearly needed to find out what's actually going on, especially with a familial history of a brac1/2 mutation history. Get to good center. Think dr datolli is in florida, get consult and see where he thinks scan/biopsy should be done

    As to the psychological, finding a good fit with antidepressant is one step, I take Wellbutrin. Which seems best for me. Also, suggest small dose klonopin to take when stress peaks. Also, find a good psychotherapist and see him/her regularly, also, get mindfulness training and force yourself to slow increase time per day. I also added a hypnotherapist.

    OCD is a difficult diagnosis to treat, will take time, work and effort. But as dr Myers told me stress and hormones induced are like a volume control for cancer, so in the event you do have it stress not a good thing. If don't have it, don't want stress to push the expression of brac1/2 with epigenetics . My case of decades of hi stress , epigenetics caused the hypermethyaling my PTEN gene silences this cancer brake.

    Good luck

  • thanks..yes.....started spinal pain and now radiating all over to my sternum and down to my shins...bizarre...and that's within past 10 wks. Urologist said MRI shows small left nodule on prostate but suggest MRI focused biopsy or MRI guided biopsy but they don't do them in our area so I am trying to find the best place for that. This was all Friday at 4p so I've been struggling with this all weekend. (As you all know)..

  • Suggest, if u have nice local GP can write you script for low dose klonopin tomorrow , take 1/2 pill to give u some peace and allow u to think clearly

  • just put on Zoloft but takes 2 weeks...taking OTC pain meds, don't work; difficult to function with no rest and increased pain; messages to urologist but no live person and forever to respond...I don't know how long I can deal like this

  • and the klonopin script for the peaks to enable you to move forward?

  • Ohh..I didn't know u could take both. Constant physical symptoms have me incapacitated. MY MRI results show small focal malignancy within peripheral zone on left measuring 3 x 5 mm. Of course, I'm worried now with the hematuria, urinary symptoms that have been years and the increased back/skeletal pain. Asked urologist to review MRI with me but he said too busy, will see me on appointment 6/23. He said I need MRI guided biopsy but doesn't know where to have it done. Medical care here so different than up North.

  • Yes can take both klonopin and antidepressant, just tell all drs all meds u take as good practice; as I have done, I would travel to get best dr for issue at hand, good investment. There are many here that can suggest where they got top guided multiparametric MRI guided biopsy. Perhaps John Hopkins or Sloan Kettering or see about datolli in florida

  • Datolli does not do biopsy, only consult AFTER...but thanks

  • I'm sorry about the more definitive information you received on your MRI, rickym1. Surely your urologist is going to find out where you can go for your biopsy and arrange a referral for you...right? Or do you prefer to figure that out for yourself? I'd think it would give you a semblance of relief just to have that scheduled. Meantime, know I'm thinking of you in your efforts to manage your pain, anxiety and frustration. If you tend to think a benzodiazepine (Klonapin) might help, my opinion from afar is that podsart's advice may be well worth considering. As I think was already stated, it would exert its effects within hours, not weeks. Best wishes as always.

  • I had to work all weekend to find a place for the biopsy. Urologist Office refused to do so. Thank you for your kind thoughts. I guess it's double edge sword, not happy that its a PIRADS 4, but small 3x5mm - so I'll be making decisions once the biopsy is done to determine Gleason. I know pros and cons for this. I understand most guys do have this as they age. Have been advised to watchful wait since its' small, but with my mind, I have to know what's real so I can have time to make potential future decisions. Talking I find that many guys would choose radiation first over prostatectomy and then there's the focal ablation therapy. Always new developments but lots of research and time needed.

  • I'm shocked by the urologist's lack of follow-through! You seem to be very knowledgeable about PCa. Your well informed decisions should serve you well. Hang in there and good luck.

  • I'm overwhelmed with it all actually. Some people don't like to know, but for me, I feel like I have some options as you can guess, I have trouble "just sitting and waiting". I may have to make some decisions further down, even if it's years away so I try to weigh pros and cons. Some say do the focal ablation laser; others say it's multi-focal in prostate so there'd always be need for surveillance. And others tell me, they would only do prostatectomy as LAST resort (I know they have had their surgery years ago)...but they would attempt radiation first -due to side effects. I'm not sure what other options are out there.

  • I understand and definitely feel for you, rickym1. If and when active surveillance or watchful waiting (expanded to include waiting on treatment response, waiting for testing, etc.) is indicated, that can be especially difficult. We naturally want decisive action and definitive answers with no delays. Unfortunately, management of cancer doesn't tend to work that way. We have to learn how to accept a lot of extra uncertainty after diagnosis. As you can see from browsing here, there's much more uncertainty for some than others, but it's very real to all of us. That has certainly challenged me. Sometimes knowledge and insight result in more pressure on us "thinkers" but would we trade that for more peace of mind? I'd say that is doubtful. There is probably an element of truth to "ignorance is bliss" but in cases where we can do something positive about something, I definitely don't believe it is a virtue. What I'll advise may be an oversimplification and even less helpful to you than my mindfulness suggestion, but here goes. I find that thinking of and even reciting to myself the serenity prayer helps me, and I'll add that I'm not religious or overly spiritual. Best wishes.

  • Thanks. I know that prayer well. I am doing my best at Law of Attraction but positive affirmations are difficult for me. Trying to be open to anything that will help.

  • Your psa looks pretty good but with all the pain you're having you need to keep pressing the Drs for answers. Prayers they find the problem and you will get some rest.

  • Oh my God... Get to a major cancer center and see a genitourinary oncologist. Let them examine you. Have results of biopsy forwarded to oncologist. It seems that you're running in circles...but you really need to be in the care of a cancer facility...for you...your health and peace of mind. Here is number for Cancer Treatment Center in Boca Raton - (561) 923-3100

    Memorial Sloan Kettering NYC and Dana Faber - Boston

    Are two leading cutting edge hospitals on the east coast. If you can travel...contact Dr. Karen Autio at Sloan or Dr. Mark Pomerantz at Dana.

    Don't wait any longer.

  • Lombardi24: Thx. It's soo frustrating that there's so much info we need to sift through. My bx is in a few weeks. I think I need to decide surgery vs radiation which is huge; and then who and where. I agree, it's a whirlwind and I get lost in the process. I'm trying to set up a consult soon with someone, I'll check those names and thank you.

  • I feel for you...and I completely understand your fears. Your feelings are valid ones. But please talk to an expert in the field. ❤❤

  • Trying to find the "right" expert and look at location for distance (when discharged, can you travel?) and cost, of course. Nothing is easy.

  • Many of these don't list prostrate as their specialty? Best way to research? Should I look for genitourinary oncologist, surgeon, urologist? Don't know where to begin

  • Look for a hospital or cancer related institute with a department that specializes in genitourinary oncology.

  • They will put a team together to review biopsy and help you decide the best course of action. Usually includes a medical oncologist a surgeon and a radiation oncologist. You don't have to figure this out for yourself.

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