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Advanced Prostate Cancer
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Mets to the bone

Hello all, my dad(70) had a routine blood test and found out his PSA was 12.2, he had not had a PSA for many years. Went to a urologist who felt something on the DRE- did the 12 core biopsy and 4 cores were positive- 2 were 8 and 2 were 7 all with high %. There was nothing found on the right side, only the left. Went in for the bone scan and the CT expecting it to be clear- hot spots found on the sacrum, legs, spine and possibly the skull (had previous surgery on the skull so not sure). I am just dumfounded- how can he have so much cancer and his PSA only be 12. He also feels great, no pain, everything else is great! We go next Monday for the full reading of the scans as the dr only had notes from the person who read the scan. Help me wrap my brain around this and think of what to do and ask next at this appointment. Thanks so much!

38 Replies
oldestnewest

Cannot analyze--cannot surmise---you will need IMO---to get to that Doctor's Appt---and get the real scoop---we are not Doctors here--at least I do not know of any.

Nalakrats

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I have never had my PSA go above 10, however i have bone mets to my spine, ribs, pelvic bones and skull along with a couple of my lymph nodes. My doctor indicated that because my PSA was low, the PSA is not always an accurate way to determine the status of the cancer so I have have regularly bone scans and CT scans when the doctor feels that we need to check on the status of the cancer.

Good Luck

Dennis

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Dennis- thank you for responding and giving me some insight- I honestly thought they had made a mistake at first but now I am coming to the sad realization that this is what we are dealing with. Can you tell me what treatment plan you are on with the bone mets?

Thanks again!

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Please keep in mind that bone mets look the same as an old injury , or even arthritis. The Dr. will have to make this determination. Low psa aggresive disease is fairly rare, but certainly possible.

I wish you the best’

Dan

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praying hard that is the case- this gives me hope!

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I have been dealing with this since 2005. Started out with a Prostatectomy done using the da Vincy Robotic Surgery. Six years later when my PSA started to rise again I had 36 treatments of radiation to my prostate bed. Since 2011 I have been on Lupron every six months. I started out on Lupron also taking Casodex. I have had the provenge treatment, Zytiga which worked for about 18 months, Xtangi for 3 months (which didn't work), starting last September I started ChemoTherapy using Docetaxel and have had now 9 treatments with another scheduled for next week. The Chemo has kept my PSA down below 2. With the Chemo I also get a Neulasta shot each time. I get a Xgeva injection every 3 months for my bones. My Oncologist has now just started the blood work for genetic testing for my prostate cancer. I can't tell you much about this yet since I just learning about it myself.

I expect that my list of treatments will continue to grow. I think it is important to have a good attitude about the fact that you have cancer and to not give up. I've found that I can always find someone in worst shape than myself. I have been blessed with a wife who gives my total support. My family and friends who also cheer me on. There is a lot in life to look forward to. This disease has helped my focus on things that matter most. My faith in God and the little miracles He provides give me the strength and hope to carry on.

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You have a strong foundation. What a rap sheet. I ve just put my foot in the water with APC in comparison.. You have the tri -fecta . Love of wife god and life itself .May you be further blessed with happiness and love. I’m learning to focus on the simple things also. Thank you.

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Wow- I love your attitude and your desire to preserve! Thank you for helping me to see that my dad still has a chance! Do you mind sharing, what was your initial PSA and staging at diagnosis? Thanks again!

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Even in the worst case scenario (which I suspect is not the case)where I was 12 years ago, there are many treatments available to shrink bone mets and add many years,Almost all men get a good response to early adt. In the past decade the treatment of metastatic prostate cancer has had an order of magnitude change, and many more drugs in the pipeline. As a message of hope I was dx stage 4 ,M1B&L, with widespead bone mets to distant sites in 2006,gleason 10, bpsa 148. Lymph node positive. Never have had much pain. And still do not, and not on painkillers, you can see my profile by clicking on my page.

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My initial PSA in January 2005 was 10.4 with a gleason score of 3+4=7.

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dlestercarlson- with that low PSA and moderate gleason score you already had bone mets? UGH!!!

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Fortunately "so far" they do not appear to be growing and I have no pain. Recently the cancer spread to a couple of my lymph nodes which concerns us.

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Had the same treatment started in 2012,just hanging in,living my life

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Good for you- live it long and hard!

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I was diagnosed straight to stage 4 with PSA 11. Spine mets too many to count. I did chemo +lupron and all mets have resolved. But im only 8 weeks after chemo.

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Great results! Are you wiped out?

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Im 8 weeks post chemo so my hair is a little fuzzy now and im getting less tired. 10 rounds was hard for the last 3. Mostly im just keeping my fingers crossed that its a durable 0.03 PSA and it doesnt start to immediately climb and turn castrate resistant right away.

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What a fear to live with ..damPSA.. don’t project bad outcomes. I have my fingers toes my finances and my life crossed in prayer to live and find ways to be content living with this monkey on our back. Hope that chemo slams it ass. That side effects wain and you get back to do whatever it is that you really enjoy . Good luck.

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Wow this sounds so much like my dad! How was the chemo on you? I am praying for good results for you! Hope you are feeling well!

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every MO says some thing different....the last one I saw said a PSA of 50 is fatal.....the hell with these docs and their treatments with the massive side effects...I actually believe each treatment makes the PCa more aggressive with the exception of anti-androgen monotherapy....so, I bought some Xtandi and am treating myself...buy PSA test through Life Extension

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You could be right. Mod med is a scam .All I know that I would not be gracing these pages or breathing air if not for the wonders of anti biotics surgeries , adt drugs , radiation.. In fact , we are all walking miracles after treatments.

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Thank you

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First off, don't panic. If possible, I highly recommend you should go to a reputable cancer clinic (Mayo, MSK, etc). Let them tell you what's going on, and then get a second opinion. There are plenty of treatment options. You need more information on the exact details of your father's disease (genetics, etc).

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Thank you for that good advice- I am talking to my dad about a second opinion...my mom passed away a year and a half ago with ovarian cancer so this scares us all to death! I am trying to keep my head on straight this time around as with my mom I was a panicking mess!

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I’m so sorry. We have been dealing with this with my dad for many years. The two things I would recommend is to get copies of every report and read them for yourself and take notes at every doctor’s meeting.

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started a reply but the site crashed so not sure if anything went through....will start over....

first of all: I am so sorry about your mother. You are in an unusual situation where you are probably still grieving for her (and so is your dad) and now you have his cancer to deal with. so, you have a lot going on......any siblings? any close friends who can be a support for you?

spouse? re: what Damusolf said, yes, take notes.....it helps.....and good luck....

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Thank you so much for your concern- you are so right- I am still reeling from the loss of my mother- she was my best friend and only 67! Her battle was long and hard and seeing her die really shook my world. So here we are less than 2 years from that day facing another hard battle! My dad was married to my mom for 50 years so it is scary to hear him talk about his cancer as if it is welcomed- he is ready to see my mom again and misses her so much it is painful. He did tell the dr he would consider treatments as he is living for his grandchildren and he is very involved in their lives. I have a wonderful husband and a brother and sister who are here in the battle with me. I so appreciate yalls support as my brother and sister look to me as the strong one- the informed one but inside I am really battling staying positive. I feel like another large loss like this could shake our foundation and has already been trying my faith- there are things I would never say out loud so thank you for this platform. Big appointment is Monday so we will know more then! Thanks again!

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The PSA test is not fool proof. Mine was 11 in April and 33 in August. They found my cancer with a ct scan after my blood test came back with a alkaline level of 900 that ten times normal. That said your oncologist will be able to tell you more about this. Always sorry to hear another brother has this ticking time bomb go off .😡

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Thanks so much for your reply!

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I had very similar biopsy results after a DRE got me sent to a urologist. My PSA was only 2.7. Best wishes to you and your dad.

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Did I miss something? I didn't see any references to a PCa Oncologist. I think you should see one asap.

Good Luck and Good Health.

j-o-h-n Wednesday 04/11/2018 9:46 PM EDT

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You didn't- we saw a radiology oncologist but we havent seen a PCA oncologist- we were waiting until monday to talk to the urologist- do you think we should try to go ahead an find one ourselves- we were going to talk to him about referrals

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You could wait, but when you get a name(s) post it here (as well as your location) and you may get some good info here (or even referrals) / recommendations).

Good Luck and Good Health.

j-o-h-n Wednesday 04/11/2018 10:09 PM EDT

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Make sure your dad sees an oncologist who specializes in prostate cancer. Folks on this site may have a recommendation if you need one - just post what city, state, country you live in (this site has members all over the world).

Please keep us posted on how your dad is doing. And let us know how we can help. We are pulling for you both ... and praying for you, too!😊

Best,

James

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Thanks so much- getting ready to go in a bit and my stomach is in knots!!!! This is so tough!

I have a list of questions/concerns- just hope I can stay calm enough to ask them!

Prayers are my favorite- thanks so much!

Sherry

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Relax. I know it’s stressful. But just ask your questions. If you don’t understand, ask the doctor to explain again in plain English.

I have found this to be a process. It took me a year to fully understand what everyone was talking about. And I still bring my questions here for explanation and advice.

We are with you today! Let us know what they say and ask any questions you think of after the meeting. We will all try to help.

God bless!

James

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First of all- thank you all for helping me through this process! Your kindness and knowledge have been such a comfort! Second, we saw the urologist and the bone scan and CT showed lots of areas that were clear but the areas of interest were: extraprostatic extension of tumor. Possible seminal vesicle invasion on one image. Subtle areas of lysis in T10, T11 and L2. Lots of degenerative/osteoarthritis in many areas all over the body. We are getting an MRI done and possible bone scan. They are also starting him on Lupron but his first shot will be Firmagon. We are getting a referral to a Ryan Raddin, MD at the Richmond Cancer Institute as we are in Virginia. We also requested a second opinion at Massey Cancer Institute in Richmond as a backup plan. We talked a little about chemo and he wanted us to wait until we get all the results of the next tests and talk to the MO first before we think of that. We also talked about getting a bone density scan and adding Xtandi. Radiation at this point is something he isnt considering until the bone causes pain and surgery is not in his mind right now either. I am not sure I agree with the radiation/ chemo hold off but we will see...These are just all the urologist opinions, we only consented to the shot and seeing the MO he suggested. Any feedback you guys could give would mean the world!

PS- I was calm and didnt freak so you guys would be proud- his dr even asked me if I was in the medical field- ha ha- I teach Kindergarten!

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We are learning more and more that so much of what we understood about PSA as a reliable tumor marker is subject to misunderstanding. More than ever, it is therefore very important to seek out multiple opinions from medical and surgical experts prior to choosing a course of treatment.

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