bone met surgery? Experiences welcome!

@ Marion
the thing is: all these treatment have been suggested by me to our oncologist… the only procedure she tried to “find out about(!)” was the cementoplasty (similar to vertebroplasty and kyphoplasty) but was told then this could not be done because the remainder of bone is so damaged that it could not contain the bone cement.
The other options were ignored and for some we were told that there was “not sufficient evidence for them being beneficial”.

This is the wording of my letter to the oncologist dating some months back:

Depending on the result of the CT Scan (stable, growth…) we would like to be able to make an informed decision about the further treatment. As discussed chemotherapy “might” be an option but it might not necessarily be the only one or the best one.
The best option in the patient’s interest should be the one which gives a maximum of pain relief (and therefore leads to a considerable improvement in quality of life) with the least impact or side effects.
So non-invasive treatment options should be a preference.

It might well be that the lymph nodes require a different treatment approach or at a later stage but so far they don’t yet cause any noticeable problems.

For pain relief of the bone metastases we would like you to look into the following options and advise accordingly whether they could benefit my husband. Some of these options are generally used for metastases on other sites and/or different types of cancer but they have been used in other countries (US and Europe as well as in Asia) in similar cases (cholangiocarcinoma). I am confident that access to medical publications should not be a problem for you.

Cyberknife (stereotactic radiotherapy)
today’s CT scan images will be needed immediately for the experts to decide whether this treatment would be appropriate

Magnetic Resonance-guided Focused Ultrasound
(also known as High Intensity Focused Ultrasound)

Cryoablation

Image guided Radiofrequency ablation (RFA)

Cementoplasty (injection of bone cement)

Image-guided transcatheter arterial embolisation TAE

Transarterial Chemoembolisation (TACE)

Selective Internal Radiotherapy (SIRT)
Internal Radiotherapy (isotopes)

Proton Therapy

Bisphosphonates

Nerve block (as one of the last resorts)

Chemotherapy (which would probably be Gem/Cisplatin)

I may point out that the delay in diagnosing the metastatic disease falls under the full responsibility of the team in Aberdeen who did have the chance to investigate the issue properly when the rib met was still small (and therefore there were chances for a curative treatment). Requests from our GP were ignored and months after the CT scan of June 2013 it was finally noticed that a “thickening” on the rib had obviously been overlooked and/or misinterpretated and with a considerable delay further scans and X-rays were performed.

So we will not accept to be presented with just one option (the chemotherapy) without having had the chance to be advised in detail (expected outcome, risks and side effects) of all the possibilities.

Well, and the result was: the nerve block was offered… and now the surgery which makes me worry…
Parallel we are seeking privately a second opinion (at our own expenses) about the possibilities of tomotherapy… hope we get more information about this withing this week… surgery is scheduled for the 26th/27th so time is not really much.

What more can one do than present a choice of options on a silver tablet to the “specialist” (the oncologist)? Can they not read? Less invasive methods are certainly not nerve blocks and definitely not the kind of surgery they are planning now.

Venting…