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Thread: severe pain after lobectomy

  1. #1

    severe pain after lobectomy

    Hi
    Last October, my wife (62) had upper left lobectomy for nsclc. This was followed by radiotherapy. She took both in her stride and coped really well. Now the pain has taken her fight away and we are struggling to cope.

    A couple of weeks after the radiotherapy finished she started getting severe pain in her right arm causing it to hang limp. In addition, she is now starting to get severe pain in her upper back, it works it's way down her spine, across into her stomach and into her legs. It lasts a couple of minutes before fading way leaving her with a background pain which rarely goes away.

    She has been perscribed various morphine type drugs and patches which eases the background pain but not the intense spinal pain. She has had a bone scan which came back clear.

    Though the bone scan came back clear, the pain is getting worse. She is wearing a 10 microgram patche, taking 600mlgs Gabopentin 4 times a day plus 2 of 500mlgs paracetamol several times a day. Nothing seems to touch it.

    Yesterday she had a full spinal MRI scan to see if anything shows.

    In addition, several weeks ago, she started with an area of her scalp, just behind her right ear, getting very painfull to touch, followed by small lumps that are extremely painfull if touched. This is now spreading though no one seems interested in it.

    We are seeing a Pain Consutant tomorrow and hopefully she will be admitted to a Pain Control ward.

    I appreciate the efforts to try to control the pain but I desperately need to know what is causing it.

    Does this sound "normal" after lung cancer surgery and has anyone else had similar pains please.

    Thanks
    Keith

  2. #2
    Administrator Top User pbj11's Avatar
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    Hi,

    So sorry to hear your wife is having such pain this far after the lobectomy. I'm surprised as it sounds like she was doing well initially. There are tons of nerves in that area and sometimes they can cause horrid pain as they try to heal and create new connections. As for the pain management clinic, good luck. We were terribly disappointed because we thought they would offer some alternatives to the problem and they just prescribed heavy-duty painkillers. Guess science hasn't really come up with anything else.

    What is the Doc saying about these new head lumps? This is something different, but not unheard of.

    Are they saying her pain has anything to do with the side effects of radiation? I've never heard it manifest in this particular way, but everybody is different.

    I'm so very sorry and sure hope she finds something to help. It's hard to watch a fighter get the stuffing knocked out of them by this pain.

    Let us know how your visit goes today.

    God bless,
    PBJ
    Husband diagnosed with NSCLC Stage IV in 3/2005. Fought & lived over 2 1/2 years with multiple lines of treatment.

    Post describing our journey: http://cancerforums.net/viewtopic.ph...er=asc&start=0

    Left my embrace to live with our Heavenly Father in October of 2007 and now breathes with ease forever. I will miss this gentle, giving soul with the easy smile for the rest of my days, but have faith we will be together again. He's just getting a little break from me!

  3. #3
    Regular User
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    Hi Axus,
    Just thought i would chime in and metion that when my mom initially went to the hospital she presented with lumps all over her body. They were under the skin but not on the bone and painful to touch. The doctors couldn't figure out what they were, because they had never seen them. The biopsied them and they came back cancerous and thats how they found the lung cancer. Im not sure if these are the same as your wifes, but be sure to get them checked, could be the cancer spreading. My thoughts and prayers are with you in this difficult time.
    Hailey

  4. #4
    Hi

    Thanks for your replies.

    Yvettes MRI of her spine has come back clear. Her Doctor was amazed as she fully expected to find a tumour in her spine. Now they admit they haven't a clue to what is causing the pain in her back or scalp. When I see her Doctor, I will ask about a biopsy on her scalp.

    At last she was admitted to the pain clinic yesterday. They are taking her off all painkillers and starting afresh to find a suitable one.

    Four years ago, Yvette had "crystalization" in her breast, she had a lumectomy followed by radiotherapy.

    When we saw her chest Consultant about 3 weeks ago he said he may have seen more chrystalization but wasn't sure. Seeing as Yvette is having a routine Mamogram in July, he will wait and see what shows then.

    July now seems a long time away.

    Keith

  5. #5

    Update

    Hi
    It is now 8 months since Yvette had her lobectomy and she is still in constant pain plus waves of intense pain. Both the bone sacan and the MRI spine scan came back clear.

    She was admitted to the Paliative care ward for a few days followed by a referral to the Chronic pain clinic. Her medication is now :-
    Butrans 15micrograms/hour Transdermal patches
    600mlgs Gabopentin and 2 of 500mlgs paracetamol 4 times a day
    clonazepam 50 microgrammes 2 at night plus half a tablet as required
    2 Buprenorphine 40 micrograms sublingual tablets as required.

    Nothing seems to touch it.

    As to her scalp, the pain has now spread to about two thirds of her scalp with a single hard swelling to painfull to touch and an area just about where the spine joins the skull which is extremely painful.

    The only suggestion we have received is to see a dermatologist which will be on the 4th August.

    She is now feeling very depressed and is being to believe that she will never be rid of the pain.

    Keith

  6. #6
    Administrator Top User pbj11's Avatar
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    Gosh Keith -- I really feel terrible hearing this update.

    As I've probably said before, I don't have much experience with constant pain nor the meds.

    I just wanted to send hugs and best wishes to you and your dear wife. I'll pray for some answer to her pain. It's little wonder that she is feeling down. Anyone in her situation would.

    I'm so sorry.

    God bless,
    PBJ
    Husband diagnosed with NSCLC Stage IV in 3/2005. Fought & lived over 2 1/2 years with multiple lines of treatment.

    Post describing our journey: http://cancerforums.net/viewtopic.ph...er=asc&start=0

    Left my embrace to live with our Heavenly Father in October of 2007 and now breathes with ease forever. I will miss this gentle, giving soul with the easy smile for the rest of my days, but have faith we will be together again. He's just getting a little break from me!

  7. #7
    Senior User
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    Hello Keith,
    I am so sorry to read about your wife's pain. It must be unbearable. Have you thought about posting your struggle over on CancerGrace.org ? Maybe Dr. West or his associates might have heard of this syndrome and can aim you in the right direction.
    I will say a prayer for your wife's relief.
    Charlene
    Husband Danny, age 66,
    diagnosed squamous cell June 6, 2008,
    Right pneumonectomy performed with no adjuvant chemo or radiation on Sept. 2008
    Metastatic lung cancer in the ribs, scapula and right kidney raised it's ugly head May 2009.
    Renal cell carcinoma diagnosed May 2009
    One round carbo/taxol, too weak to continue
    Cancer racing like a freight train
    Held my husband's hand when he passed away September 29, 2009

  8. #8
    Hi

    Thank you for your reply and best wishes. I have gone on Cancergrace.org and allready had a helpful reply from Dr Mary Pinder

    I am trying to get an early appointment to see one of Yvettes consultants but so far without success

    Regards

    Keith

  9. #9
    Senior User
    Join Date
    Jun 2009
    Location
    Jacksonville, FL
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    I hope they find something to relieve her pain soon.
    My dad was diag w/nsclc stage 4 & mets to spine & hips on 11/08 at age 43. Large mass on R lung & collapsed L lung. No surgery so chemo & rad 5d/wk. No results. 4/09 rushed to the hospital b/c breathing issues. Hooked up to o2 & treated for infection. Released when o2 levels were good w/help from Hospice at home. In Hospice as of 6/2/09. Passed 6/10/09. Missing you forever daddy.

  10. #10

    Update

    Hi

    Thank you for your messages.

    As nothing was happening about the pains through Yvette's body, and a long wait to see a dermatologist, I decided a more pro-active course of action was needed. According to our GP, it could be anything so keep taking the painkillers as we might never know what it is.

    On Monday the 22nd June, I wrote a long letter to all the Consultants we have seen, listing her present and past condition. I started be writing:-
    I am writing to ask foryour help, no I am begging for your help..

    Saturday morning the 27th June I received a telephone call at 09.15 from a consultant saying he had only just read my letter and we must come in Monday morning at 09.00 and insist the receptionist book us in to his clinic. We did, saw him at 09.15 and Yvette was admitted straight away.

    Today she has had an MRI scan with radiation injection and blood tests. They are arranging for the Dermatologist to see her while she is in.

    We are hoping and praying they find the cause (s) and they can be treated. If they say they cannot I may yet refuse to bring her home.

    Sometimes it pays not to sit back and wait for the Doctors.

    Keith

 

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