Husbands suffers from severe plaque psoriasis for over twenty years
Current Treatment:
Firmagon @ 28 days
Zytiga and Prednisone @ Daily
Chemotherapy @ 21 days for 6 sessions
My Husband has had a rough start
First Chemotherapy session was put off due to bad psoriasis flare because he is no longer taking the Tremfya injections
(They are immune suppressants)
Started Chemotherapy 8/11
Bad psoriasis flare from chemotherapy or because of no Tremfya as MO was not sure.
My husband also had and has constant back right side neck pain, that started 10 days after the first chemotherapy infusion…
Which MO and fellow said it was muscular and didn’t want to do a scan.
So again, when he went for follow up for lab on 9/1 they still convinced us for the second time, it was muscular, by just looking at it and talk us both out of a scan or X-ray.
We weren’t happy.
So, Second chemotherapy was put off to 9/13
Since then and through out, my husband cannot move neck all the way right or left
His range of motion is off
What type of scan or is it an X-ray, that we should asked his Medical Oncologist to do?
We feel we have to constantly begged for a scan, then we are talked out of it anyway…
We spoke to my Husband’s Primary Doctor, but he wants the MO to do it at their location because of the bone Mets etc
What type of scan
Bone or Cat Scan or an X-ray of neck?
The MO certainly won’t do a PSMA Pet Scan
We want to make sure the pain in neck and limited range of motion is not a bone met or God Forbid something else
We ARE at a NCCN Teaching Hospital
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Shorehousejam
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I suggest you seek a different MO or meet with a radiation oncologist. It is best to get multiple opinions from physicians at an NCCN cancer center who focus solely on genitourinary cancers.
1. Doc is probably right about not needing a scan at the moment. It is unlikely to inform any of his treatment decisions.
But I would specifically ask Tall_Allen here about what scans would be appropriate at what time.
He is by far the most knowledgeable person in these forums on that subject.
2. By the way, for most of those scans, you want a PSA of 2 or greater to best avoid false negatives. And also you probably don't want to do them during treatment, or for some time afterwards.
Maybe if you have pain in the neck, you have a tumor that you might want to zap with some local SBRT radiation. But generally, once the cancer becomes metastatic, localized treatment is wasted sword motion.
Again, ask Tall_Allen what he thinks.
2. Go get a few second opinions from some centers of excellence. That means you need to pretend this is important and get on a plane to get these second opinions.
Right… to zap with radiation what type of scan or is it an X-ray, that will tell us if it’s a new met. We are trying to find out, what type of scan or is it an X-ray that we can ask for
Since chemotherapy on 9/13 and through out, my husband cannot move neck all the way right or left, lack of range of motion and his posture is off, his neck is like leaning forward, we want to see what is causing the pain and stiffness, and causing the lack of range of motion. My husband had no Mets noted at the only psma pet scan he has had, however age related uptake was noted in salivary glands…At diagnosis my husband had no pain in right back side of his neck, this started 2 months after diagnosis and 10 days after first chemotherapy infusion.
we shouldn’t have to fight anyone, since our private insurance that we pay for, pays for everything… it should not be this hard to get a scan when there is a concern with discomfort and pain involved
We spoke to my husband’s primary doctor, who wants my husband to request again a scan, since all his scans were done at this teaching hospital, it’s just infuriating to have to constantly beg for a scan, it’s really frightening and frustrating to us…
If the symptoms are pain and short range motion of the neck , consult with an orthopedic doctor.
I believe they will order a MRI of the neck. With the MRI they can visualize the joints including the disks,the nerves in the neck and also the spinal cord. They could rule out a spinal cord compression,They could also visualize mets.
We did ask my husband’s medical oncologist for a referral to an orthopedist, but we don’t see it in the portal. We plan on asking again, when we see him tomorrow.
Thank you for helping us…this is from my husband’s psma pet scan on 07/01/2022
BONES/SOFT TISSUES: Multiple PSMA avid osseous lesions, for example:
- destructive lesion involving the right iliac bone with large soft tissue component extending medially into the iliacus muscle and laterally into the gluteal musculature, measuring approximately 11.6 x 10.8 cm, SUV 68.8 (image 261)
- destructive lesion in the right sacrum with soft tissue component extending into the right S3 and probably S4 neuroforamina, measuring approximately 3.8 x 2.2 cm, SUV 53.0 (image 268)
- left proximal femoral diaphysis with cortical thinning and intramedullary soft tissue replacement, SUV 37.7 (image 329)
Based in this info, the lesions are in the pelvis, in the iliac and sacrum bones and in the left femur. They did not mention any lesion in the cervical spine.
Isn’t S3 the sacral spinal nerve 3 (S3) is a spinal nerve of the sacral segment. Sacral spinal nerve. The plan of the lumbosacral plexus. and
S4 and S5 control nerves that affect the hips and groin. S2 nerves affect the back of the thighs. S3 nerves affect the medial buttock area. S4 and S5 nerves affect the perineal area. The perineum is between the legs
7/2/22: PSMA PET - IMPRESSION:
1. Marked, heterogeneous enlargement of the prostate gland with multifocal PSMA avidity and photopenic, likely necrotic areas, compatible with prostatic malignancy. This mass invades the left posterolateral urinary bladder with associated upstream left moderate hydroureteronephrosis and abuts the rectum, for which involvement is not excluded.
2. Large PSMA avid left external iliac metastatic nodal conglomerate.
3. Intensely PSMA avid osteolytic lesions with soft tissue involvement, including largest destructive lesion in the right iliac bone, a left proximal femoral shaft lesion with cortical thinning and intramedullary soft tissue replacement, and a lytic lesion in the right sacrum with invasion into the right S3 and probably S4 neuroforamina.
Correlate clinically and consider further evaluation with MR pelvis as clinically warranted. Advise weight-bearing precautions.
4. Multiple PSMA avid mediastinal and axillary lymph nodes, possibly metastatic.5. Overdistended urinary bladder. Correlate for urinary retention.
They did not find any lesion in the cervical spine. The limitation of movement in the neck ("my husband cannot move neck all the way right or left"), may not necessarily be caused by cervical metastases. Discuss again having a consultation with orthopedics or a MRi of the neck.
Discuss to add abiraterone or darolutamide to the actual treatment (ADT plus chemo).
Well, we didn’t ask, as we have an appointment with the primary doctor and will get a referral, we were focused on the sever flare of plague psoriasis.
I am not a medical person, but IMHO a PSMA PET scan would reveal where prostate cancer cells have spread. For YEARS MRIs and CT scans showed “shadows” on my skeleton. It was not until I had a PSMA PET scan this year that it was verified those shadows were Mets to my bones.
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Bad news or 'routine'?
Increase in bone Mets?
Can PC patients get new mets with a non detectable PSA
Next treatment options
Chemo not working for bone mets
