bone met surgery? Experiences welcome!
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Pazel……your summary proves that you are an educated advocate for your husband. Unlike years ago when patients trusted their physicians opinion without question, in today’s age we have to do our homework as well. You certainly have done so, dear Pazel.
I hope with all my heart that your husband will be relieved of his pain with a method proven to be successful.
Hugs,
MarionHi Patzel, sorry for replying only now… Haven’t checked the board for a while… My dad has extensive bone mets diagnosed in April, and has gone through tomotherapy only. The ones near his shoulder, bottom of his spines were treated but not the ones on his ribs cos they are not major and do not hurt. I fully understand the pain as my dad first started with OxyContin and moved onto morphine as well. He’s also using the durogesic patch. I am sorry I cannot offer much on the surgical option you are presented because our ONC never offered that option to us. That sounds rather dangerous and I would definitely ask about cryoablation and other options. Our ONC said there are also options you can get from an anesthesiologist such as intervening with the nerves around the tumor (sorry for the lack of exact terms).
Oh and at one point we were also on steroid because the tumor was flaring up, which helped.
My dad’s experience after being on so much pain meds is he’s restless, constipated, and confused. But I am sure everyone her can tell you the side effects. And then it’s just more meds to treat the side effects.
I supposed you are already on zometa?
Sending you lots of love from HongKong,
ValHi Patzel,
I recently had cryoablation on a lesion in my collarbone of my left shoulder. After 4 months of chemo for multiple masses in my liver, lung and a lymph node a scan showed all those issues had been cleaned up by the chemo but there was one lesion in the collarbone. The cryoablation is a fairly simple, non-invasive procedure that was similar to the biopsy in that a needle was stuck into the bone, liquid nitrgen was used to freeze/kill the cancer and then the next day the hole was filled with bone cement and procedure was complete. Not sure this would be an option for the location and size of your husband’s rib met but I would recommend at least checking to see if it is an option. My procedure was about 3 weeks ago and only pain I feel now is similar to how a bone fracture feels as it heals. I know there is some concern with this procedure when the location is close to nerves, my lesion was contained within the bone well enough the risk was minimal.Either way I sincerely hope you can find a procedure that will work to alleviate your husband’s pain. Pain can wear a person out, cause changes to their normal disposition and put stress on caregivers when there is nothing they can do to help. Best wishes for your husband and you as well.
Patzel, your letter was excellent, got your point across and nicely done. I have a feeling they just don’t know what to do or much about how this is attacking your husband! Save all your notes! I am glad to read you are seeking a private opinion as no matter the outcome, you know you turned every stone and will never question or regret it. Sorry, but something just doesn’t ring right to me. BTW, Teddy started out on 50mg of Morphine then went to 75mg and then 100mg 2 X a day with hourly break through if needed. Very important to keep it going because if it is stopped or lowered he will not get back to the comfort he was at. If he is in that kind of pain I would think he needs more of a dosage. Yes, he will sleep more but to me that is better than this pain. We are on a good roll with new treatments in the future but sadly it’s all in the future. Be strong!
… and my husband is back on 40mg MST (slow release morphine) twice a day with a tendency upwards again plus oral (quick release) morphine several times in between… he does not manage to be active with this dose and gets sleepy. I have read Jeff’s posts before and always wondered how he could manage to still be active, obviously the morphine does work very differently in people.
@ 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 appropriateMagnetic 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…
Hi Suzanne,
No personal experiences to share of this as my dad never had it, hopefully others will be able to share their experiences if any with it and hopefully those and the links that Marion gave you will be of some use and interest. What ever your husband decides to do here I wish him every success with it and hopefully he will get some relief from his pain asap.
My best wishes to you both,
Gavin
Pazel….I hope for someone to come forward and share experiences and thoughts with you.
Enclosed are some previous postings re bone mets all which are dated years back.
http://www.cholangiocarcinoma.org/punbb … hp?id=1694
http://www.cholangiocarcinoma.org/punbb … hp?id=1527These thread is lengthy, but focuses on pain in general:
http://www.cholangiocarcinoma.org/punbb … hp?id=1527
I recall a few discussions on Cryoablation,also called percutaneous ablation, cryosurgery or cryotherapy.
This single arm multi-center trial proved it to be effective against bone metastases:
http://www.ncbi.nlm.nih.gov/pubmed/23065947Others have been successful with Vertebroplasty:
http://www.sirweb.org/patients/vertebroplasty-osteoporosis/
or Kyphoplasty
http://www.radiologyinfo.org/en/info.cfm?pg=vertebroIn re: to bone mets, JeffG had worked out a system beneficial to him:
Quote:
“I have bone mets to ribs, left shoulder, and spine bone. I ‘m living almost pain free by taking Morphine 30mg every 8 hours and 4mg of Hydromorphone every four hours as needed for break through pain. You have to take without skipping doses or the effect of relief is not maintained. I tried skipping and ended up in hospital for three days for pain management and was up to 60mg at one point. As you know we all respond differently but this is what works for me; and I still stay pretty active”These are my thoughts, dear Pazel. I so much wish for your husband to be relieved of his pain.
Hugs,
MarionDear Patzel, this is really a tough one and I feel so bad for your husband. I think at this point in time I would ask at least 2 ONCs IF, your husband was their father would they do this surgery? I know this sounds ridiculous but listen to what your gut tells you, I am hoping other members will post their views. My thoughts are with you and your husband.
Has onyone had surgery to get rid of a solitary bone met of cc?
So far no palliative treatment for pain relief on my husband’s rib met has worked or only worked temorarily. Latest failure was a phenol intercostal nerve block which was a very painful procedure and obviously didn’t work.
Now the hospital came up with the idea of surgical intervention. They want to remove the lump (about 11 x 5cm now after 1.5 years of “waiting”) plus probably a resection of the two affected ribs (anterior part or whole, no clear message about that so far).
Anybody who underwent such surgery?
As far as I know it is good practice in civilized countries (sorry, UK seems to be some sort of a third world country when it comes to the NHS) to give pre-operative radiation and/or chemotherapy (either locally or systemic) to make sure any cells which might go stray through surgery do not have their full potential to circle around via the bloodstream and spread the cancer cells everywhere.
A (more or less cosmetic) hernia repair surgery was cancelled last year due to the risk of cell seeding. But now they want to attempt locoregional surgery without any preventive measures? Isn’t this a contradiction?Since it is mainly (again) only a palliative measure could it be that this is the reason of “accepting” this risk from a consultant’s point of view?
Also after having read through many medical publications about the risks of this sort of intervention (not only the risks associated with any operation under general anaesthetic) I am not so sure whether it’s in my husband’s best interest to go ahead with this surgery.
It seems that this surgery does bear a lot of complications and side effects, to mention especially the pain after operation which can last many months after op and can supposedly be stronger than the original pain, nerve damage, mesh problems, breathing problems etc.So a rib resection doesn’t seem a walk in the park… any experiences?
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