Chronic Pain after Stage 4 Breast Cancer Surgery, Chemo and Radiation

Posted by fiesty76 @fiesty76, Dec 19, 2019

Is this normal? Mine is underarm and continuous from lumpectomy. Surgeon says nothing can be done to relieve it and to get “used to it”. Have others found some type of relief from the pain? Several months now since surgery and treatment. Suggestions much appreciated.

@fiesty76, I moved your discussion to the Breast Cancer group because I think you'll get more responses to your question about persistant pain after breast cancer treatment here.
@madijen @k1958 @baynie @wendyh @barbaranathalie @beku @cindylb and others talk about similar pain in this discussion:
– Post Mastectomy Pain Syndrome https://connect.mayoclinic.org/discussion/post-mastectomy-pain-syndrome/

And @roch and @trixie1313 started this related discussion:
Cording / Axillary Web Syndrome (AWS) https://connect.mayoclinic.org/discussion/cording-axillary-web-syndrome-aws/

Pain is pretty hard to "get used to." What have you been doing to get any relief?

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@fiesty76
As it was explained to me, nerves can be cut because of surgery which will cause pain. I wound up with partial mastectomy following first surgery of lumpectomy with chemo inbetween both and after the second surgery also had 30 radiation treatments. Radiation can cause fibrotic changes and hard ridges. I've also wound up with lymphedema of my breast. Unfortunately, there is a lot of pain involved because of all of this. I do take turmeric capsules as an anti-inflammatory and also rub calendula cream on my breasts and around armpit area. If you can meet with a physical therapist, that person can teach you stretching exercises for your chest area and arms which may help.

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@fiesty76 @trixie1313

My surgery wasn't as extensive as Trixie's (only lumpectomy and sentinel node removal), yet, the internal scars can pull and ache… not all the time, just now and then. When that first started, I was alarmed until my NP explained that it was normal for my situation. Do raise the issue with your oncologist, however, because you want the area examined and a conclusion reached.

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@colleenyoung

@fiesty76, I moved your discussion to the Breast Cancer group because I think you'll get more responses to your question about persistant pain after breast cancer treatment here.
@madijen @k1958 @baynie @wendyh @barbaranathalie @beku @cindylb and others talk about similar pain in this discussion:
– Post Mastectomy Pain Syndrome https://connect.mayoclinic.org/discussion/post-mastectomy-pain-syndrome/

And @roch and @trixie1313 started this related discussion:
Cording / Axillary Web Syndrome (AWS) https://connect.mayoclinic.org/discussion/cording-axillary-web-syndrome-aws/

Pain is pretty hard to "get used to." What have you been doing to get any relief?

Jump to this post

THANK You, Colleen for moving my question to the Breast Cancer group. I'm still learning how many "connect groups exist" so am very grateful for your help. Such worthwhile information at each site! I am concerned that oncology surgeon seemed so cavalier about the continuing under arm pain and don't believe any of us should suffer unduly if there is help. These sites Help! Big hugs to you.

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@elizm

@fiesty76 @trixie1313

My surgery wasn't as extensive as Trixie's (only lumpectomy and sentinel node removal), yet, the internal scars can pull and ache… not all the time, just now and then. When that first started, I was alarmed until my NP explained that it was normal for my situation. Do raise the issue with your oncologist, however, because you want the area examined and a conclusion reached.

Jump to this post

Thank you for responding, Elizm. It does make sense that there are internal scars from the surgery. My pain is constant and I've just been using hot and cold paks but now, having reading more on this site, feel better equipped with more questions to ask doc and more avenues to pursue for some relief. I am so grateful for Mayo Connect, this forum and its many responsive informed members for their tips, experiences and sharing.

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@fiesty76

Thank you for responding, Elizm. It does make sense that there are internal scars from the surgery. My pain is constant and I've just been using hot and cold paks but now, having reading more on this site, feel better equipped with more questions to ask doc and more avenues to pursue for some relief. I am so grateful for Mayo Connect, this forum and its many responsive informed members for their tips, experiences and sharing.

Jump to this post

Hey fiesty76,
I’ve had ongoing post mastectomy pain since my bilateral mastectomy in 2016. I have found that gabapentin is helpful for the nerve pain and I’ve also had massage therapy for the scar tissue problems. Also stretching exercises like free style swimming are helpful. It is better but I still have pain. I think it’s something that some of us have to learn to live with. I’m happy to be living, even with some pain!! Hope you feel better soon!

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@fiesty76

THANK You, Colleen for moving my question to the Breast Cancer group. I'm still learning how many "connect groups exist" so am very grateful for your help. Such worthwhile information at each site! I am concerned that oncology surgeon seemed so cavalier about the continuing under arm pain and don't believe any of us should suffer unduly if there is help. These sites Help! Big hugs to you.

Jump to this post

No problem @feisty76. We now have 63 groups on Connect so there's a lot to keep track of. Here's the full Group Directory https://connect.mayoclinic.org/groups/
You can find the group directory under GROUPS in the navigation menu.

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@fiesty76

Thank you for responding, Elizm. It does make sense that there are internal scars from the surgery. My pain is constant and I've just been using hot and cold paks but now, having reading more on this site, feel better equipped with more questions to ask doc and more avenues to pursue for some relief. I am so grateful for Mayo Connect, this forum and its many responsive informed members for their tips, experiences and sharing.

Jump to this post

@fiesty76
By any chance, has anyone talked to you about possible lymphedema of the breast? I just went to the physical therapist today and learned how to try to work through that. Also, after my lumpectomy (first surgery), I had multiple hematomas in a honeycomb fashion which caused pain. If you have a breast care specialist, maybe check with that person or your surgeon. Oncologists don't always deal with this type of issue.

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@beku

Hey fiesty76,
I’ve had ongoing post mastectomy pain since my bilateral mastectomy in 2016. I have found that gabapentin is helpful for the nerve pain and I’ve also had massage therapy for the scar tissue problems. Also stretching exercises like free style swimming are helpful. It is better but I still have pain. I think it’s something that some of us have to learn to live with. I’m happy to be living, even with some pain!! Hope you feel better soon!

Jump to this post

Thank you for the suggestions Beku! I still can't get over the surgical oncologist not recommending something to try for at least some relief. I'm praying that a visit with my pcp, who still puts the patient first, will provide some options/referrals along with yours.

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@colleenyoung

No problem @feisty76. We now have 63 groups on Connect so there's a lot to keep track of. Here's the full Group Directory https://connect.mayoclinic.org/groups/
You can find the group directory under GROUPS in the navigation menu.

Jump to this post

Thank you for the group directory link, Colleen! Sometimes it can be right in front of me and I miss it. Smiles

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@trixie1313

@fiesty76
By any chance, has anyone talked to you about possible lymphedema of the breast? I just went to the physical therapist today and learned how to try to work through that. Also, after my lumpectomy (first surgery), I had multiple hematomas in a honeycomb fashion which caused pain. If you have a breast care specialist, maybe check with that person or your surgeon. Oncologists don't always deal with this type of issue.

Jump to this post

Thank you, Trixie. Nothing but "you'll just have to learn to live with it" was given by the surgical oncologist. Hard to believe but true.

REPLY
@trixie1313

@fiesty76
As it was explained to me, nerves can be cut because of surgery which will cause pain. I wound up with partial mastectomy following first surgery of lumpectomy with chemo inbetween both and after the second surgery also had 30 radiation treatments. Radiation can cause fibrotic changes and hard ridges. I've also wound up with lymphedema of my breast. Unfortunately, there is a lot of pain involved because of all of this. I do take turmeric capsules as an anti-inflammatory and also rub calendula cream on my breasts and around armpit area. If you can meet with a physical therapist, that person can teach you stretching exercises for your chest area and arms which may help.

Jump to this post

Not sure I replied to your post, Trixie. Thank you for the suggestions and information,more than the oncologist gave. Think the next step is asking for a referral to a physical therapist from pcp. I appreciate all the help received from Mayo Connect.

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@fiesty76

Thank you, Trixie. Nothing but "you'll just have to learn to live with it" was given by the surgical oncologist. Hard to believe but true.

Jump to this post

@fiesty76
A word about surgeons in general — I have found them to be like other specialists in that you can't ask them about anything but their specialty (a specific kind of surgery), and don't even hint that perhaps there was a problem with their work. That being said, in my area, everything seems to be targeted to specialties. For example, one can't go to a rheumatologist for (in my case) Trigger Thumb and hand arthritis. I was sent to a hand specialist/surgeon. Can't go to the rheumatologist for arthritis in my spine… was sent to a spine specialist/surgeon… and neither specialist chooses to talk about exercises which may be helpful: for those, you must be referred to a physical therapist. Vascular specialists may or may not have in-depth knowledge of lymphedema treatment. My dentist now just works on cavities… no extractions or gum health issues. For these, you go to a dental surgeon and to a periodontist (who also does the implant, if you have an extraction by the dental surgeon….). The oncologist simply suggests other specialists. Have nerve damage from the chemo? Go see a neurologist (who knows nothing about chemo damage). Have lung or heart issues from the targeted therapy? See a pulmonologist or cardiologist (who know nothing about targeted therapy). Having trouble with the hormone therapy? See an endocrinologist… etc.

And who is left to try to pull all this together into a comprehensive plan? One's poor PCP who isn't trained in the fine points of all these specialties and is trying his/her best to get us to equilibrium.

Considering the increased rates of cancer nationwide, every regional hospital needs specialists who are well-versed in oncology issues… and that's not happening. God help the patients with poor health insurance!

REPLY

Yes, Elizm, our 21st century has brought about a maze of medical specialists that makes an oldie like me yearn for those days when our doctor wasn't just our primary doc, he/she was our Only doc. who actually conducted hands on exams and picked up his phone to personally refer us to a specific specialist if needed.

OTOH, there is much more knowledge now and more available treatments that didn't exist before. The trick as a patient is learning how best to navigate the maze as we advocate for ourselves, continue learning and keep our teams informed of all that is happening with us.

After researching and reading wonderful patient forum responses to my orig. question, I condensed the shared info into a page to carry with me to my next doc. apptmn't. One side of pocket folder contains the "What about this?" possible treatments page; the other pocket the numerous pages of printed out material. Will have an annual with my PCP in January and hope this will get the attention of the pcp for additional help.

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@elizm

@fiesty76
A word about surgeons in general — I have found them to be like other specialists in that you can't ask them about anything but their specialty (a specific kind of surgery), and don't even hint that perhaps there was a problem with their work. That being said, in my area, everything seems to be targeted to specialties. For example, one can't go to a rheumatologist for (in my case) Trigger Thumb and hand arthritis. I was sent to a hand specialist/surgeon. Can't go to the rheumatologist for arthritis in my spine… was sent to a spine specialist/surgeon… and neither specialist chooses to talk about exercises which may be helpful: for those, you must be referred to a physical therapist. Vascular specialists may or may not have in-depth knowledge of lymphedema treatment. My dentist now just works on cavities… no extractions or gum health issues. For these, you go to a dental surgeon and to a periodontist (who also does the implant, if you have an extraction by the dental surgeon….). The oncologist simply suggests other specialists. Have nerve damage from the chemo? Go see a neurologist (who knows nothing about chemo damage). Have lung or heart issues from the targeted therapy? See a pulmonologist or cardiologist (who know nothing about targeted therapy). Having trouble with the hormone therapy? See an endocrinologist… etc.

And who is left to try to pull all this together into a comprehensive plan? One's poor PCP who isn't trained in the fine points of all these specialties and is trying his/her best to get us to equilibrium.

Considering the increased rates of cancer nationwide, every regional hospital needs specialists who are well-versed in oncology issues… and that's not happening. God help the patients with poor health insurance!

Jump to this post

You might have luck with a pain management doc. I have one who regularly impressed me with the breadth of his knowledge.

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