My husband was diagnosed in Feb 2017, PSA 275, gleason 8, There were several enlarged lymph nodes in the iliac chain, obturator, and largest in the para-aortic measuring 3.3 cm. Bone scan was clear. He had his last 6 month Eligard (ADT) shot on May 20, and had radiation Aug 2017. After 3 months of ADT his psa dropped to .008 and has stayed there.
He had been suffering from lower back pain with tingling in his legs, so he had an MRI of the spine April 2018 which showed some spinal stenosis. It also showed a 2 cm lesion on the left ilium (pelvis). His family doctor had a bone scan done which again was clear. His radiation oncologist said that there should have been no further research and that it should be ignored.
It is my understanding that bone scans are not as sensitive as MRI’s in seeing certain types of lesions and tissue.
In the past month he has developed a new sharper pain in his left hip and (different from his usual pain in the lower back and right side.) In the last week he can barely get around the house or drive from the pain. He has barely left the house in a week and a half. He was given Tylenol 2.
Should he be having a different kind of scan to assess this lesion and see if it is bone metastasis? Would a PET scan be beneficial? Or am I overreacting and should we be happy with the .008 psa and leave everything alone as suggested by the oncologist. He actually told us to stop reading on the internet.
I feel very overwhelmed and don’t know where to turn. Here in Canada, there seems to be no way to get new scans, or even another CT scan. The family doctor actually gave him a regular xray, saying that it is a good place to start.
I so appreciate reading the good advice from the knowledgeable members here. And for your strengh, tenacity and sense of humour.
Thank you for any information you can give me.
Catherine
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The issue is not finding lesions, the issue is pain. If it is causing pain, he may be able to get some relief with a single zap of radiation to the lesion. 2 cm should be big enough to biopsy to make sure it's cancer.
Thanks for your reply. There doesn't seem to be a way to confirm that it is a cancerous lesion and therefore it won't be treated as cancer. With a PSA of .008 no one will look further into it.
That just doesn't seem right. I've learned that PSA is sometimes unreliable in assessing PCa.
Just yesterday I had a biopsy of a bone MET that isn't responding to ADT. (no results yet) but the PSA level was never a part of the decision to move forward with the evaluation of the bone MET.
Thanks for your reply GranPaSmurf. The fact that it showed up on an MRI but not on a bone scan maybe suggested that it wasn't a bone met?? I don't understand why no one seems to want to investigate further, especially now with his severe left hip pain. I guess we'll have to make some more "noise". The squeaky wheel gets the grease as they say.
Thanks for your input whatsinaname. We would get an axumin scan or a biopsy tomorrow if they were available to us. We are in Ontario, Canada and these options don't exist. If the PSA is still low, they won't prescribe any further tests. We don't have "pay for treatment" options. It may be time to find a new doctor. Or alternatively, we could pay for scans in Buffalo NY as we are an hour and a half away. They treat a lot of Canadians who are willing to pay for treatment.
After Radical prostatectomy my PSA nadir was .58 at 90 days, then 1.1 at 120 days. I took an MRI which was clear. I requested a fluciclovine PET scan which the insurance company denied but my radiologic oncologist battled for me. She won and we learned that I had 3 lesion. 2 in my pelvis and 1 at T11 in my spine. I had no pain and zapped the lesions. That seemed to be a success as PSA FELL TO .6 in the fall of 2018. It rose modestly through Feb and March, then took off like a rocket ship. My numbers are improving with ADT. If it were me I would try to find a way to get one of the PC specific PET scans. F18 or GA 68 psma scans. I am a fellow warrior which does not make me an expert. I look at it as providing peace of mind or early warning. Both are worthwhile and reasonable to get. You mention PSA of .008 on Or about May. When will the next test be? With the pain I would also suggest frequent tests. No less than once a quarter. One last amateur suggestion is to seek oncology Drs that only treat Pca if you haven’t already.
Good luck!! I hope the pain is from an orthopedic origin and goes away soon.
Thank you so much for your response. I think it is time to change doctors and find someone who can prescribe further tests. In Ontario Canada there is no pay for service, so we only get what is prescribed and his present Doctor won't do anything until there is a PSA rise.
Can you afford to come to US to pay for service? Maybe you could negotiate something. Not sure if Northwestern or Mayo does that, but might be worth a call to find out.
I am going to look into USA service. It may be our only option. I would like to arrange to get the scans you mentioned that are specific to PSA. I will check Buffalo first since it is two hours away from us. If it turns out not to be cancer, his debilitating severe left hip and back pain will be a whole other issue. Perhaps as a result of bone density loss from ADT.
Thanks for your reply Lupronzytiga. We would like to get the GA-68 PSMA but it is not available here in Ontario Canada. His RO won't conduct further tests until his PSA rises. Our only alternative is to see if we can arrange treatment in the USA .
I can't thank you enough for this information. I looked up the trial and there is a contact person in New York which is a 6 hour drive from here. My daughter in law is a research trial coordinator here in Canada, so she may help us if we run into problems.
I’m not an expert on anything, and can only relate my own experience, so take my reply (as I hope you do with all other remarks and advice) with a large grain of salt. I was Stage 4 oligometastatic (one small tumor on r. inferior pubic ramus) at Dx in 2015. The tumor “lit up” like a bright star on my initial PET scans, but I never had any discernible bone pain. After starting ADT, my PSA went to undetectable, and I still had no bone pain. Like most cancer patients I wanted the tumor zapped (if you have something bad inside of you, you want it out of there, right?), but Dr. Tan, my Jax Mayo Clinic M.O., and Dr. Katherine Tzou, R.O. at the Mayo, discussed it with me, and with their advice ( they both said that sometimes these things disappear on their own) I decided to wait on zapping it. They ordered a bone biopsy, which confirmed the etiology of the tumor to be PCa. Sure enough, the results from a follow up PET scan a few months later showed the tumor had magically faded into nothingness. 2 follow-up PET scans, most recently a Axumin PET scan about 5 months ago...still no sign of it. The reports called it “interval resolution.”
We’re all different. So, depending on your husband’s own individual situation your decision may vary. Definitely have it biopsied, and go from there. Best wishes to you.
Thanks for your comments. From reading your reply and all of the others, I realize that everyone is different in how they respond to treatment and also with the treatment they get. There is no exact science here. Congratulations on the resolution of the small tumour. I think its normal to panic at certain stages of this disease, and I think I have done that because of the severe pain that developed in the last two weeks, but we just need to go through the motions and not think the worst.
Assuming that he had a MRI designed to pick up PCa, the found lesions may or may not be cancerous. Bone scans are designed to detect osteoblasts. Frankly, my understanding is that any MRI can not “see” osteoblasts. They are designed for soft tissue contrast. MRI can detect lesions; however, it could be from a number of sources. The only way to know for sure is via biopsy. Then, they are always the false negatives ......
Now, I am of the opinion that a biopsy will spread cancer cells. Many researchers agree, yet many, do not. My research medical oncologist says the risk is too great to take. However, it is the only way to truly know for sure. He relies on nuclear imaging along with soft tissue CT scans and blood work numbers.
The above is my understanding as a lay person who has had over two dozen nuclear bone and soft tissue CT scans since 2004. Note from 2010, I had only one set in 2016. Never have I had any MRI during this period related to metastatic prostate cancer.
Ask your family doctor who ordered the MRI, “Did this test detect osteoblastic changes?”
Thanks for your response Gourd Dancer. The MRI was ordered by his family doctor to assess his back pain. The MRI found "hypointense lesion within the inferomedial aspect of the left ilium, given the patient's history a bony metastasis cannot be excluded."
As I mentioned to the other members, here in Ontario Canada we do not have access to any treatment or imaging unless it it is prescribed by a doctor. We don't have pay for service. We have an RO and my husband hasn't seen him in over a year. Unless his PSA moves, his doctor won't respond. His family doctor ordered another bone scan but from what I have read, if the PSA isn't higher, nothing will show. If it was't for the severe onset of debillitating left hip and back pain I would't be so anxious for further assessment.
We want to keep "kicking the bastard" but I feel like I'm facing a brick wall with our health care system in Canada. People say, get another doctor. Easier said than done.
I have been feeling very much alone in this journey, but I have to say that getting responses from you awesome people has helped me realize that there is a community out there. Thanks so much!
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