Thank you for sharing all that you do! I'm trying to learn, but this feels like a science class wayyyy over my paygrade.
My boyfriend had his prostate removed six months before I met him. I don't know a lot about it because he doesn't like to talk about it. In fact, he doesn't seem to want to know a lot about it. Personally, I am a reader and I want to have all the info I can get!
About 18 months after his prostatectomy, his PSA was found high after a routine physical. From all that I've read and gathered, he has recurrent stage four prostate cancer. His physicians have not ever used "stage" when speaking with him, nor have they mentioned Gleason score to him. I do not know his PSA at any time or his Gleason score. I've been to several of his 32 radiation treatments, and he is getting quarterly or bi-annual (I'm not sure on this) hormone shots with some pills for a booster just after the shot. I have the names of the meds if that would help y'all. His next shot and follow-up are in February, and I will attend that also. He seems relieved and grateful that I take an interest, but he still prefers to ignore the details. I do know that he has mets in the lymph nodes near the prostate bed and possibly in his hip. The doc told him his hip "could be arthritis but we will just go ahead and hit it with the radiation".
He finished his 32 radiation treatments just before Christmas, so just three weeks ago. Since that time, he has had ongoing constant pain in the area where the prostate was, plus stabbing pains that seem to happen every few minutes. He has had a low-grade fever this whole time, plus painful urination, sometimes chills and shivering, loss of appetite, night sweats that soak the sheets, and so much fatigue. He thinks it's a UTI, but I'm not so sure of that. His PCP had him do a urine test, which came back negative, but they prescribed anti-biotics anyway because "it sounds like one". His oncologist and assistant, who I thought we liked, sort of blew him off when he called to ask questions about this. Because after a week there has been no improvement, his urologist had him do another urine test today (haven't heard results yet).
My question (the one at the forefront...I have dozens!) is this: Would the radiation cause all of this stuff he is going through? Is there something more cancer-wise or infection happening? I know y'all can't diagnose, but from experience, please share what you went through. I looked into the caregiver message board, but it's not very active. Thank you in advance for all the sharing y'all do!
xoxo
shuggshugg
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Shuggshugg
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Sounds like he has a lot going on and the sharp pains seem most concerning to me. Some symptoms sound like side effects of treatments. Others will help but follow up with actual names of the meds he is on and any he was on. Find out his Gleason score and PSA now and when he was diagnosed.Radiation has known side effects and the Dr who radiated could be consulted. Based on the pain noted getting scans should not be a problem and would be highly recommended IMO.
I will say the responses of the Drs as noted above seem completely unsatisfactory IMO. At the same time keep asking questions and learn all you can about your man's specific disease. Prostate Cancer varies between men as does responses to treatments.
Hola treedown ~ yes the pain is concerning and I hate to see him suffering this way. The lack of response from his team makes me angry. It's his show and so he needs to make the phone calls. I'm not convinced that he is being as assertive as he should...perhaps all part of the denial.I don't know his PSA scores from any point in this journey. I know that he had the first of the injectable hormone shots before radiation began, the took 30 days of 50mg bicalutamide to (I think) supplement the shot. He will be on hormone therapy for two years. The radiation finished the week of Christmas, and he's been quite ill and having trouble working ever since. Fortunately, he works from home and has pretty good flexibility to rest throughout the day.
Sounds like regular treatment or SOC (Standard of Care) . It could be just a hard response to the drugs, some get it worse than others. But actual pain may mean something else as others have stated. Being assertive is important, in my opinion, squeaky wheels do get the Drs attention but more so if the questions show your educated about what's happening to you (him). The irony to that is that's also when you depend less on your Dr's. I think your right about the denial. Poorly stated it may be an unintentional form of suicide.Good luck.
😔he has already said to me a few times "I just want to die". I don't think he is suicidal, but my therapist gave me some tips for discussion if he says it again or if I see an opening. Hopefully, he will be open to me getting more involved during doc appointments...next follow-up is in February. You are right, being assertive here is crucial, for him and maybe for me also, if I can be helpful. I'm trying to learn all I can so that I can be a good support for him.
He is blessed to have you and you have come to the right place. Since he is doing Standard of Care focus on replies about that and lean away for "alternative therapies" replies that aren't about your mans treatment at this time. Just my opinion but there's a lot to learn and your in PC 101 right now. This disease has been fought by many with a worse prognosis than myself for many years. Some do it with shear luck but most by educating themselves or having an advocate like yourself. Best of luck.
I Spouted suicide for three years to my innocent and obviously super strong wife . I stopped it . He can also . Your love is key . He must love himself to endure this . Self loathing and self hatred ,supercharged frustration of a new us ,been there ,done that.more Exersize
He has a lot to live for .It’s a blessing to work from home now . That’s great . All that matters is that that this all works! We want him better . ❤️🙏
So he doesn't like to talk about it. Not surprising. Three possible reasons: 1) many (most?) men don't like to talk about any health problems; 2) it might be "way over his pay-grade" too; or 3) the doctors are just not into explaining well.
Whatever, it is axiomatic that no man should go to any appointment alone. There's just too much info too rapidly for anyone to absorb and understand it all. Go with him, take notes, ask questions; make sure at least one of you understands everything.
In many practices and clinics there are "nurse navigators or educators"; they are dedicated to helping you understand.
I note you say boyfriend, make sure that he completes (signs) a form allowing the staff to talk openly with you. It's a HIPAA requirement. Wives/husbands have to do this too.
Yes, taking notes at Dr's appointments is a good thing, but I would add: Better to get a small voice recorder and take that with you. Always ask permission of the Dr. before turning it on, but in my experience, none have ever refused. Listening again to the conversation is far superior to trying to make sense of your notes.
Hola Garbonzeaux ~ recording is a great idea! I will ask him before we go the the followup in February if he will be okay with me asking questions, and also how he feels about a recording.Thank you!
Hola BerkshireBear ~ it's the first. He simply doesn't like to talk about it. It was months before he told me that the cancer was prostate and that it had been removed. I had already figured that out based on the scar and other things.I'm not sure that his doc office had him sign forms, but maybe. I went back with him to the appointment where he got his first shot and they described the radiation therapy procedure a bit. I didn't ask any questions (o I had some!) because he and I hadn't discussed ahead of time that I'd come back, so I hadn't cleared it with him that he would be okay with my asking things. I was not allowed in the back for his treatments (of course). I feel like he asks very few questions because he is afraid of what he might find out. He's great about not googling things, which on one hand is healthy, but on the other, frustrating to me that he is in the dark about the specifics of what he's going through.
Thank you for the reply!
Welcome! Who knew that we need to be scientist and mathematicians to understand pc? It’s tmi…,you’ve found the best cite for info . He is a more typical male than not . Don’t like to talk about it . I had 8 wks imrt . I had crazy random pains shooting all over m body for years. But i had severe uro problems also . I still have my prostate and that is were most of my pains were . I know the hell that he’s going through . The fatigue the pain the hot flashes ,I had them all and more . This suffering 101 for us guys and those that love us . I’m sorry for this . I had three terrible years myself . It can get better .. love helps ,he’s got you . You must be very strong and care for yourself .. also . 🙏❤️
Keep hope alive . Never give up until the fat lady sings ,we fight . We are all going over the falls in the end . The beatings will continue until morale improves . Until then we stroke stroke 🚣🚣🏻♀️🚣🚣🏻♀️.
He’s got YOU babe! Therefor I don’t worry about him . He can live for decades once he puts this down to sleep . I was much worse than he and I’ve been clear six yrs now . The inevitable said return could happen . That’s if the heart doesn’t go first . Get him through it . Stay positive .. men can be stoic and stubborn . I am one . Sorry 😂✌️
I've had radiation two different times after prostatectomy and never experienced pain. I've also never heard of any guys experiencing pain from radiation.
Not to sound alarmist, but elevated PSA after prostatectomy means advanced prostate cancer, and advanced prostate cancer is a life long war.
If your boyfriend wants a normal life span, I suggest he 1) take the disease as a serious threat to his longevity and 2) work with the most experienced medical oncologist and most experienced radiation oncologist he can find and care enough to answer every single question. He is lucky to have you as his lady friend.
Hola ron_bucher ~ yes, definitely considered advanced because it's returning. Ugh...a lifelong battle is pretty overwhelming to me. I'm just the girlfriend of 18 months here and with health problems of my own. This getting older stuff is not for cowards!Thank you for your reply!
Thats no joke Shuggshugg ..love is the only cure to life..it’s a reason to live ,we take it on the chin to be loved . I’m happy he has you . Care for self always . I can’t think of anything harder on a relationship than this? Be strong .. 💔🙏
To summarize, after a failed prostatectomy, he received whole pelvic salvage radiation with added hormone therapy (the quarterly shots) and some mystery pills (Casodex? Zytiga?). If that's what it is, he will get the hormone therapy for 2-3 years. (BTW, after cancer was found in his lymph nodes, Gleason score no longer matters. It sounds like his stage is N1). Hopefully, that will be all he needs and he will be cured.
A very common side effect of the hormone therapy is "hot flashes." Night sweats and chills are part of it. There are some treatments for hot flashes - venlafaxine, estrogen patches, Megace, acupuncture or Oxybutynin. They usually diminish over time.
The painful urination is a side effect of the radiation and will hopefully be temporary, usually not more than 3 months. He may find some relief from Flomax or from Oxybutynin (works on hot flashes too). He can also try Pyridium (available over the counter) - careful - it stains - but it's soothing.
Hola Tall_Allen ~Yes, good summary, thank you. I don't know the name of the injections that he will get quarterly for two years. The 30-day med he took with that shot is bicalutamide 50mg.
I was guessing stage four because of the hip involvement even though the doc said "might be arthritis, we will just hit it with radiation anyway". Before the radiation he had been having some hip soreness...haven't heard him mention that since but he doesn't tell me everything.
Thank you for the response and the suggestions for symptomatic relief. I'll be encouraging him to make calls and not continue to suffer in silence.
Your bf is so, so fortunate to have you in his life! Fighting this nasty disease alone can be overwhelming.
Tall_Allen, I refer to him as our 'resident PCa guru' since most of us put more faith in what he has to say than the majority of doctors! He answers almost every post expeditiously and with unsurpassed knowledge and detail.
My prostatectomy (performed 17 years ago) resulted in BCR (biochemical recurrence...failure); however, I'm still kicking and feeling great at the ripe old age of 78. I didn't see where you mentioned your bf's age?
There are loads of articles on the NET explaining terms and conditions of PCa; here is just one that you might want to read: hopkinsmedicine.org/health/...
Anyway, hang in there and continue trying to gather as much info as possible so that our experts can assist in this journey. You are doing all that you can and I salute you!
Oxybutynin? Really? I have an unused RX for that on the shelf. They didn't do much for incontinence so I stopped taking them. You are a wealth of useful info T_A!
Hi, I went through similar treatments (surgery followed by 6 weeks of radiation). As for me I never had any pain, mainly just hot flashes and more fatigue than usual. Perhaps question the current doctors more, in light of Tall Allen’s suggestion, or seek a second opinion?
We are all squeaky wheels to the MO ‘s . They are on a mission to save us . But they are well aware of every side effect . They hear it over and over . At least they are well paid! ❤️😂
My dad described his pain after radiation exactly the same: “ongoing constant pain in the area where the prostate was, plus stabbing pains that seem to happen every few minutes.”
Pain medication did nothing for it. Pain was very severe, he could not sit, he even ate lunch standing! But pain almost completly disappeared when he stared taking vitamin B 1 & B 6. Vitamin B is very beneficial in case of neuropathy and it looks like this was the case with my dad.
MyDad76 ~ thank you for sharing his experience. I will check in to see what B vitamins he takes and encourage him to try B1 and B6
We are all beginners initially . I don’t think it will take very long at all for you to get the jest of this disease . It can deplete us emotionally and physically .. We need much love and compassion . There is Nothing easy about it for the ones that love us either …. Stay strong ..😎✌️
If you would like to know, and your boyfriend is willing to let you know, I'm sure his PSAs and Gleason are in his records. I'm thinking they also must have done scans to find where it had escaped to. I saw it above- but wanted to reiterate fir him to fill out HIPAA firms so you will be allowed to talk to his doctors should you need to. I know how you feel about info overload. I felt that way when my husband was diagnosed stage 4 in 2017. This site is THE best. So many great guys on here that truly help with information. I had to limit myself to 2 hours in the morning of being on here researching. Otherwise I forgot to actually spend time with my husband and kids😊 I bring a notebook to every appointment and write all the stats plus what we discussed. I also write questions in it as I research to ask his oncology team. They are very supportive of my questions.
@ Shuggshugg: I, too, developed almost identical pains in the area where the prostate used to be as well as stabbing pains, post-radiation. My urologist said these pains resulted from bladder spasms. Tall_Allen mentioned Flomax as a treatment and that is exactly what my urologist prescribed. (Generic name for Flomax is Tamsulosin.). Tamsulosin worked very well for a few years but, ultimately, resulted in slowing my heart rate too much (bradycardia). My urologic oncologist switched me to Solifenacin (brand name: Vesicare) and, so far that has worked well without slowing my heart rate. The one problem with Solifenacin is that it dries me out significantly - - throat, mouth, nasal passages and constipation. Those problems, however, are easily dealt with and I have no spasm pain.
Seems like he needs to recognize his condition as NOT terminal and open up to his doctor's more then they will in turn be more interactive.We are all different in action, reaction, and how the Cancer progresses or digresses.
But if you could get him to authorize you to have access to his medical records that would be a big plus for you to help him manage and get better.
I agree many men tend to keep things inside and that eats away at the spirit.
Many on this site have been on the Cancer path many years and some decades. Me going on 7 years and started with G9 aggressive.
Hey there. Welcome to this group. You will find them very helpful.All of the things that go with prostrate removal and chemical castration are tough and hard to handle. More so at the beginning of this trip. I had a terrible time with seeing my muscles reduce and my body hair fall out. It is also a major life change to see and feel the sexual changes that come with the surgery and specially the ADT. I had a terrible time with hot flashes early on. There are several different ADT drugs. Have him talk to his oncologist about this.
Its nice to see you so interested in your man's condition and his state of mind. Hang in there! Let him know he is not alone. I can also tell you that 5 years in my state of mind is so much better than it was. Largely due to the sweet lady who has walked this walk with me.
Hola Shuggshugg, First of all most men are big babies..... They do not like doctors, hospitals or any medical conversation. Next Tell us his age and location and where he is being treated?
Get him to a good Medical Oncologist, ask here for referrals in your area (medical center).
Tell him He must talk to doctors and to you more about his condition(s).
Most of us have been through what he's going through, and yes our sex life is nothing but a memory (so don't fret there are many avenues in sex)...We all made it.....
You are a sweetheart and a doll for picking up the mantle concerning his condition. God will honor you for that... (BTW if he doesn't want you, I'll take you, but don't tell my wife 😏)
Wow! Y'all are so kind and generous with your experience and knowledge...I can't thank you enough! I've read through this thread several times and taken notes.
In answer to questions: he is 61 and we are in the St Louis MO, USA area at the Siteman Cancer Center with Dr. Baumann.
Today his urologist called in a script for bladder spasms (he didn't remember the name yet when we spoke). I hope it helps.
I will be seeing him this weekend and bringing up the topics of
-if he is comfortable letting me look at his records even though he doesn't like to look or discuss
-making sure that he has or will sign papers to let me participate in his care
-also this biggie: more trying to get him to tell his family. Right now, I am the only one who knows, in addition to one of his closest friends. It's too lonely for him, and also is some pressure on me to be the only one supporting him.
Thanks again, everyone...I'm so grateful for your help 😘
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