A distressing situation

[dliu]

Hello all,

My mum finished her 10 cycles of FOLFOX + Avastin in Nov and is currently on a break. According to our oncologist and the radiologists report, the last CT scan evidenced minor shrinkage and no progression. The previous scan from September mentioned "lesions of a lytic significance" in the skeleton, which our onc attributed to (probably) either the therapy or neulasta. The November scan said everything was the same in that respect, so we didn't worry about this.

My mum has had severe back pain since the end of chemo. She spoke to a doctor specialised in pain management and is now taken a codeine-based painkiller which seems to be helping.

The issue is, my brother's mother in law, who is a traumatologist, stepped in and asked to see the scan. She talked to another doctor who is friends with my mum and now they're going around saying she has skeletal mets and it's time to get prepared. They have not spoken about this to my mum, just to my uncle, who called up our onc asking for clarification. The onc once again stated things were stable and limited to (although vastly spread in) the liver.

This has thrown me in a pit of despair. I don't really know who to believe anymore. We really trust our oncologist, even though he's an optimistic kind of guy, and do not think he would be concealing such news.

On the other hand, should we seek a second opinion? Should we trust these people? I'm sure they know how to read a scan, but they're no oncologists...

[stu]

That’s distressing . Unless they are specialists in that field ie radiologist or oncologist I would be inclined to accept the report of your trusted doctor .
My mum got put on morphine for back ache by an unfamiliar doctor . Her posture had changed during chemo so we removed her from it and got her more active . She was very ill with the medicine . She still gets back ache but it was not attributed to Mets .
I do believe they saw Mets in the liver and assumed it was end stage disease but it was far from it . To be reasonable your oncologist will have seen more than them so unless you have any inclination otherwise I would clarify it in the new year but leave it for now .
It’s particularly unhelpful to spread that information anyway .
Take care,
Stu

[mpbser]

dliu, I recently noticed that one of my husband's scans noted degenerative disc disease and sclerosis in the lumbar spine with "likely bone islands" at L5. I was concerned that perhaps this was metastasis to the spine because I have read that mets could be misdiagnosed as bone islands. However, upon further reading that is very unlikely and if the radiologist has the impression that they are sclerotic, they are most likely just that and not mets. I read further about metastasis to the spine, just in case they actually ARE mets, and radiation can easily take care of them. There are people on this board who have had spinal mets treated and are fine. So, I just wanted you to know that there is hope.

[dliu]

Thank you both for such encouraging information. It is a Christmas gift to counter the anti-Christmas snark that came from that side of the family!

[KimT]

Are there no privacy laws with regards to health records in your country? Nobody should be looking at your mothers scans and discussing her case behind her back. I’d be having a very frank conversation with your brother about his mother in law looking at your mothers scans. She is not a radiologist and she has no business looking at the scans of a person who is not her patient. Your mother is the patient, she endures all the treatments and feels all the pain. It is quite disrespectful that all this discussion is going on without her knowledge.

[dliu]

The issue is my mum gave her access to her scan, as she wanted some advice for her back pain. So no breach of privacy there. Totally agree with you about speaking behind her back though. And I agree it's disrespectful, as well as heartbreaking for us, receiving second hand information.

[Rock_Robster]

Hi dliu, I’m sorry to hear this - it’s the worst when people who aren’t best placed to comment give opinions on these things.

If it’s any comfort, my initial staging CT showed a sclerotic lesion on my spine and a lytic lesion at the top of my femur. They said they had a ‘benign aspect’ on the CT, and neither of these showed up as mets on the PET scan. My onc was happy to put these down to normal bone development, aging and injury (and I’m ‘only’ 36). It definitely happens.

Best wishes to you all.

[MissMolly]

My father had bony lystic lesions on his lumbar vertebrae, L4 and L5. The lesions invaded the core body of the vertebrae and outbranching peduncles.

My father knew “something was up” when he began to have intermittent bowel and bladder loss as well as balance issues when upright/walking. Specifically . . . uncomfortable and persistent constipation, abdominal distension, absence of anal sphincter reflex, urinary retention, consistent loss of balance to the left/left deviation.

So . . . Be watchful of any bowel or bladder loss or balance issues.
Karen

[dliu]

My father had bony lystic lesions on his lumbar vertebrae, L4 and L5. The lesions invaded the core body of the vertebrae and outbranching peduncles.

My father knew “something was up” when he began to have intermittent bowel and bladder loss as well as balance issues when upright/walking. Specifically . . . uncomfortable and persistent constipation, abdominal distension, absence of anal sphincter reflex, urinary retention, consistent loss of balance to the left/left deviation.

So . . . Be watchful of any bowel or bladder loss or balance issues.
Karen

My mum has had intermittent constipation since bowel surgery, and balance issue since the first few cycles of chemo, which was attributed to something related to her neuropathy. She had a brain scan to check that there wasn't anything related to that. Should I assume something is up?

[dliu]

They said they had a ‘benign aspect’ on the CT, and neither of these showed up as mets on the PET scan. My onc was happy to put these down to normal bone development, aging and injury (and I’m ‘only’ 36). It definitely happens.

Best wishes to you all.

Ah, thanks Rock_Robster! I've been pushing for a PET but the doctor said it wasn't necessary at this stage. I'll try pushing some more without alarming my mum