Okay - there are five nodes located outside of the pelvic floor - by chest and neck. Had one round of chemo - after RP, Gleason 4 + 3, small amount of tertiary 5. No nodes noted in pelvic region when radical prostatectomy was done. PSMA was 5 at three months post surgery. PSMA was 7.5 on next test and then 9. Genetics came back with no red flags. Doing triplet therapy - no cancer in organs or bones. When I look online it says the five year survival rate is 34% for five years. Is this correct?
After 6 rounds of chemo, going to get another PSMA pet scan.
This survival rate is terrifying me right now. Help - how accurate is this?
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Luvmyman
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Keep in mind they are just numbers and don't reflect individuals. So many factors to consider and each individual is different. Upon my diagnosis I was told by my Dr 3 years was probably it. Going on 9 years in June. I fired that doctor. A good example is I caught mine very early, my friend the same age caught his late. Both diagnosed within a month of each other. He has been dead for 2 years
I too was a Gleason 7, when I was diagnosed, it was also in the lymph nodes, my PSA was 150, I was 56 years old at the time, I'm now into my 69th year.
The hardest thing for all of us upon diagnosis, is the shock, the how, why and the when. My wife would take our dog for a walk in the woods, so she could cry, how does one process this.
We all look up survival rates at the beginning, when really we shouldn't, there is no point to it, what was my survival rate supposed to be, whatever it was I'm still here and intend staying around a very long time.
Once the shock subsides and the treatment begins to work, your lives will settle again.
A year or so ago, I posted "Some Encouragement" the response was amazing, have a read, all the people who were once in your place and are still fighting, years and years later, there were so many uplifting responses, how each of us copes and emerges again.
Yes you will see changes in your husband, due to the medication, I'm sure at times he will become frustrated, but patience is the key.
You are not alone, you have come to a very good support group, with loads of experience and support from wives and the men afflicted with this beast.
On that note, I'll sign off and wish you and your husband all the best.
Thank you for your kind words. I am struggling. Do you mind me asking how many lymph nodes - regional or distant? The distant thing is what’s really got me worried. I need to calm down - kind of in flight or fright mode right now. He is an amazing husband, father, friend who has worked so hard his whole life. He is continuing to work because he doesn’t want to lose his healthcare.
Hi, off the top of my head, I think it was two, pelvic lymph nodes.
From your post, you say " no red flags" which is good news. If there were distant ones, I expect that would have shown. Those in his neck were distant, but have been treated.
My treatment, is Zytiga, Lupron and prednisone, I have not had chemo, or radiation, the thinking behind the treatment is to suppress the cancer cells and therefore not allow them to progress further.
For you now, with respect, is to try not to over think the situation. The information that you have to hand is all positive and from that you can all go forward.
I think that your husband will suffer from tiredness, if he is working, he may need to talk to the doctor to find if there is something that might help him, depending on his work.
Honestly do not read up any further for now, there is way too much information out there, it isn't always correct either and it will cause too much anxiety.
Okay, sorry, I misunderstood. Naturally you are worried, I have a friend who had the same treatment and has been clear for many years now. There is no reason why your husband shouldn't be the same. They will monitor to be sure 👍
I was also dx Gleason 7 PSA 156 at age 56. Had radiation and ADT treatment , a break, then recurrence. We found mets in upper spine. Dr decided not to radiate. I was put back on ADT. That was Jan 2023. As of my last tests I am still hormone sensitive and my life is relatively normal. I agree with Lettuce, and have come to a place that I am living life and enjoying it as if I did not have cancer. Yes I get anxiety around tests but not in between. And I won't get myself worked up until something changes my treatment and keep praying that day doesn't come. This July will be 6 years since dx and in some ways I am in better shape than ever. Retirement helped that. I hope the best for you and your husband.
You must and I emphasize must stop thinking about the beast..... Remember most men leave the performance with the beast rather than from the beast. Enjoy life!!! BTW what's your dear Husband's age (add it to his bio)?
Worry is like herpes........... Stop it NOW!!! I had my prostate out at 66 and I worried and worried for a few years.... until one day I said F-it and laughed (and laughed). I am 88 now and still laughing..... Take it from me, your dear husband will beat the Beast!!!
was it in distant lymph nodes? That’s the worry. I know what you are saying, though. I will try - been crying every day. Lost my dad not long ago - just feeling a lot of pain.
Okay. If there are truly 5 nodal mets and no more on PSMA PET then he is oligometastatic and could greatly benefit from SBRT radiation treatment targeting those nodes. This is called “metastasis directed therapy”. I would not wait to finish chemotherapy unless it is nearly done. Get a new PSMA PET scan and consult a good RO to evaluate and plan for SBRT treatment. Promptly. MB
Neck and chest lymph nodes are easily self-treated with very hot shower. I eliminated neck node mets with hot showers, about 110 degrees, for about 30 seconds. It took a few attempts, but the pain vanished immediately after heat application. I was on Lupron also.
This is what I'm talking about. in my case they felt pain to the touch just like about two dozen other metastases that I had all over my back and ribs. Call it what you want.
I think not hot enough but I'm not sure. 106 degrees F is needed to kill cancer cells. You need above that to reach beneath the skin. Also need to consider the body tries to cool itself with blood flow etc. The heated object, whether a rock or steel weight or flowing hot water, or electric pad, has to be about 110-120 degrees, sustainable for several minutes. Don't scald your skin. Back off and reapply to avoid burning.
The stage of the cancer, the type of cells, and the patient's overall health are critical in determining the appropriate treatment plan. A healthcare provider will typically provide a more personalized outlook based on these factors.
If you or someone you know is dealing with this situation, it’s essential to discuss treatment options with an oncologist or urologist to understand the best course of action.
treatments have improved , including beneficial combinations of ADT drugs …. aPCa men are living longer than they used to live. No one can accurately say how long we will live. When I was first DXed , the time we lived was estimated at 18-24 months. It changed shortly after that to 24-36 months and now it’s supposed to be 5.5 years to well over 6 years ….. but many men here are outliving that .
I was DXed with Mets in ALL my bone joints , even up into to my skull and mandible. Mets in ALL my lymph nodes too. My PSA was 1400-1600. Table full of doctors wanted me to enter inpatient hospice immediately. I decided to try ADT to lessen my pain load , and here it is 6 years and 4 months later and I’m still here moving forward . The point being we are all individuals / different and no one can say exactly when we will pass.
It’s natural to worry and have angst, but hubby is likely to live longer than you expect , and if things continue to improve , who knows ? Just imho but hubby is getting the newest triplet therapy which is the current best treatment with many other, life extenders , waiting in the wings. Now seems like time to relax a little and enjoy the QOL time you guys have left. Now being better than later, …… later on “ things “ aren’t likely to be as good as they are right now.
If he responds to triplet therapy, the 10 year survival rate greatly improves. Bear in mind that stats for survival include all comers, some with more aggressive disease than others. Doesn't include other risk factors such as cardiovascular disease. He's on the right treatment and responding well, thus far. See where he is after the 6th chemo treatment.
No need to be. It is awful to hear when you first get the news. Be aggressive fighting this, be proactive. Don't be discouraged by the stats. There are many here who have outlived what they were initially told and new treatments keep coming along.
My husband (58 years old) was diagnosed about 9 months ago with Gleason 9 and spread to distant lymph nodes, but no organ or bone mets. He started triple therapy with ADT, Nubeqa, and docetaxel in August/September. His PSA was only 11 at diagnosis and became undetectable right after the first chemo infusion. He finished chemo in January and the follow-up PSMA PET showed no evidence of disease. Because he still has his prostate, we then began radiation to hopefully kill the prostate and also with radiation to the lymph nodes that were positive on the first PSMA scan. His MO, RO, and urologist were all in agreement with treating aggressively with the hope of a cure. So far, it appears to be working and we're hopeful that continues! Wishing you all the best.... don't lose hope!
Thank you, Guchamamo. We have had one round of chemo - did your husband lose his hair? It sounds like we are in the same boat and course of treatment. His PSA is dropping. We are fortunate that it is not in the organs or bones. We know none of the PSA is coming from the prostate, as it is gone. I will say a prayer for you, and I am not usually a big fan of praying, but God knows, we need every power available to us at this tie. Hope is definitely important.
Using the PSA to determine cancer sounds like a crap shoot. Many people can have prostate cancer with a low PSA. There has to be a better way. 🙏
Thanks for the prayers, we'll say a few for you and your husband as well!
He lost almost all of his body hair, and maybe 75% of the hair on his head. He's now about 2 1/2 months out from his last infusion and the hair on his head is definitely thickening up again. We haven't noticed much change in body hair yet.
He did find that using the ice mitts/socks and eating ice chips during the infusion helped some with the tingling in hands and feet afterwards and with the taste changes. His taste has been back to normal now for about a month and he feels much better overall. Having some diarrhea with the radiation but we only have,2 treatments left!
He did not wear a cap. He wore a beanie when we went out anywhere...and even at home a lot. It was also winter here and quite cold, and he didn't worry a lot about the hair loss.
if you don’t have one get a good oncologist and forget the urologist . Don’t give up the fight. In 16 they gave me a 50/50 of 5 years. I’m going on 9 years in August. Plan ahead bring your loved ones together but never give in there warrior.
I too read the survival rates for my grade of metastatic prostate cancer G9(4+5).. IIRC, 36% survival rate for first 3 years and none survived to 5th year.
So… after Long talk with RO/MO, I was told those numbers are from years ago, and until the last couple of years, imaging, radiation and other treatments had advanced greatly.
And that, at my point a prognosis could not be given, because at this point my PSA is undetected.
RO said my treatment was “curative” in intent and that if it does come back in 8-10 years advancements would have that much further advanced.
So, be optimistic, but be prepared for the struggle and enjoy each others love.
When I first got the diagnosis, I was despondent.
The journey is tough, ADT has been hard for me.
In all of this, my love for my wife has given me the strength to power through the tough times.
Life is such an amazing gift and to couple that with having a loving relationship, it makes life’s journey a truly magnificent adventure… even through these tough times.
Like others on this site, I have been very fortunate to have responded well to treatment following Dx more than 12 yrs. ago. I was Dx with stage 4, PSA in mid 30s and climbing fairly quickly and a Gleason 9, along with several bone Mets and one lymph node met). I have only been on ADT (Lupron and abiraterone along with having prostate removed and 3 radiation treatments- as triplet therapy wasn’t the SOC at the time of my Dx.) A Gleason 7 is thought to be less aggressive than Gleason 8,9 and 10- so that’s hopeful. However- while not intending to alarm you, my little knowledge on the subject of PC makes me wonder why his PSA has been increasing over the course of 6 months while on triplet therapy. That’s something hopefully someone on this site, or perhaps your MO can address as it may be something to be concerned about. Can anyone shed some light on this?
He just started Triplet therapy; it was rising after prostatectomy. It has dropped from 7 to 1.2 after first shot of ADT. Not sure what it will be after first round of chemo. Glad to hear about your success. There is hope.
In 2015 the five year survival rate may have been 34%. It is not that low anymore. With drugs like Nubeqa, PARP inhibitors, combined therapies and more survival has gone up. That rate also may have been for more severe cases than Gleason 4 + 3.
I was diagnosed 11 months ago at age 55 with Stage 4, Gleason 10 cancer with spread to bladder neck and pelvic lymph nodes. My PSA at Dx was only 2 (very rare and terrifying). Went to Duke to get the best care possible.
No surgery due to spread, immediately initiated Xtandi and Orgovyx which shrunk all tumors in 6 weeks, so we haven’t needed chemo yet. PSA as of 5 weeks ago is still <.01. Those were a dark 6 weeks before the scan last May as my oncologist wasn’t sure tumors would respond at all due to my normal PSA at Dx.
We did low dose radiation in October to prostate bed to give my meds time for further consolidate the tumors.. No real side effects and scan in November showed no active Mets anywhere. Oncologist very pleased and said goal is keep me going for 10 years until something curative comes along.
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