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Post Mastectomy Pain Syndrome (PMPS)

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  • Calee65
    Calee65 Member Posts: 41
    edited July 2018
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    carmstr835...so in hindsight, do you wish you wouldn’t have done radiation

  • carmstr835
    carmstr835 Member Posts: 147
    edited July 2018
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    Caylee, no

    I needed it. I have positive lymph nodes and extranodal( meaning it grew fast 2.6 cm in 9 days and burst the nodes).

    I am not sorry. Just not happy with the neuropathy. I did not know neuropathy was a possible side effect of radiation, but I still would have done It had I known.

  • AliceKo
    AliceKo Member Posts: 44
    edited July 2018
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    Calee, wow! Your radiation oncologist said something negative about radiation!!??? Mine was speaking about it, like it is G-d sent for all and when I asked specifically about rare cancers, lymphodema, nerve, skin and muscle damage she told me "women do it", "it's on our waiver"....

    If your lymph nodes are clear and you had a mastectomy, you can think about not doing it. In no way this is an advice.

  • Calee65
    Calee65 Member Posts: 41
    edited July 2018
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    AliceKo. My Medical Oncologist told me to think long and hard, after she stopped my Taxol treatments at 9/12. Radiation Oncologist wants me to do it, and wouldn’t really talk about any issues other than ‘sunburned skin’...like they didn’t exist.

    I had a bilateral mastectomy. 2/10 nodes, and LVI(??? She said tentacles reaching out from the tumor???), so that’s why I NEED radiation. Still can’t decide if 10% is worth the chance of more nerve pain.

  • AliceKo
    AliceKo Member Posts: 44
    edited July 2018
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    Calee, tough choices...So it's your medical oncologist that is warning you, makes sense.

  • AliceKo
    AliceKo Member Posts: 44
    edited July 2018
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    Let me share my experience for all who are suffering with nerve damage and neuropathy. I have had nerve damage and neuropathy following chemo and mastectomy and sentynel. I did craniosacral soft tissue work (like a massage) and then I started accupuncture (with an excellent practitioner) and my symptoms have improved significantly - that numbness under my arm has changed - I mean it is not what it was prior to treatment, but it has sensation for sure - that crawling sensation on the backside of my arm - that has improved as well. And I do try to rub it myself at least a couple of times a day. Maybe it can help someone. I do have to say that it has cost me a significant amount of money and I am not happy about that - these treatments are not affordable at 75-120$ a treatment.

  • Calee65
    Calee65 Member Posts: 41
    edited August 2018
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    has anyone had trigger point steroid injections or Botox injections in their chest for the tightness/constriction across their chest?

  • everymoment
    everymoment Member Posts: 6,656
    edited August 2018
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    I have not seen any research on Botox for PMPS. This morning I came across a study being conducted at Emory University on PMPS. Fingers crossed!

    Cryoblation to ease pain after mastectomy


  • nash
    nash Member Posts: 146
    edited August 2018
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    Calee, I have had both TPI and Botox for tightness. TPI did not help much. I’ve only tried the Botox once and it didn’t help. But the dr said she gives a very low dose the first time to see how the patient tolerates it, then a stronger dose the second time. I’m going for the second try at the end of the month.

    magiclight, thanks for the link

  • aussie-cat
    aussie-cat Member Posts: 5,499
    edited August 2018
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    Nash, I hope the second botox injection really helps.

  • nash
    nash Member Posts: 146
    edited August 2018
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    Thanks Aussie Cat! Me too! I’ve tried literally everything else. This crap is getting old!!

  • BarbaraT54
    BarbaraT54 Member Posts: 11
    edited August 2018
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    hi fellow lady sufferers !

    I have not had a pain free moment since July 2013 when I had a prophylactic double mastectomy and flap reconstruction, as I am BRCA2 positive and was dx in 2009 with ovarian cancer and again in 2014 ( 8 months after mastectomy).

    To make a very, very long story short( impossible) as a result of my first ovarian cancer surgery- 8 hours of debulking surgery, then the 10+ hours of breast surgery with a hernia repair. ( The plastic surgeon never saw so much scar tissue in his life he said ), I the 2014 ovarian cancer surgery 8 months after mastectomy, with the same hernia being repaired again, I developed lymphedema and PMPS

    The head of pain management at Penn said my pain is from “ all the cutting.”

    I dx myself in 2013 with breast lymphedema and post mastectomy pain syndrome. I’ve seen MDs who are more than happy to prescribe opioids (they don’t work for me) I’ve tried 1800 mg of neurontin - did nothing! The dr offered Lyrica, then Methadone - no thank you

    I’ve tried ice, dry needling, acupuncture, physical therapy ( I’m on my 8th physical therapist), lymphedema therapy, Lymph Star, laser, massage, lotions, pain patches, compression garments, tape, etc etc etc

    My pain is my entire torso - even in my sleep.

    However - Medical marijuana has actually been helping a little!

    I take the edibles in a hybrid of Sativa for pain and the Indica strain for pain as well as an anti cancer element.

    My drs are very encouraging and my oncologist thinks it’s been helping the cancer to not recur.

    I also was in an immunotherapy trial for 34 months.

    With ovarian cancer, one is never considered cured- just praying for the next test to be okay - AS WE ALL ARE!!!

    Good luck ladies - try the cannabis ! Even for a few precious hours, it is wonderful to feel a little better.

    Barbara








  • aussie-cat
    aussie-cat Member Posts: 5,499
    edited August 2018
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    Barbara, I'm so sorry that you've been so much - it sounds terrible! It's great that the medical cannabis is helping and I hope it helps a whole lot. I wish we could get it in Australia but it's still very hard to get it here.

  • BarbaraT54
    BarbaraT54 Member Posts: 11
    edited August 2018
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    Thanks so much. The cannabis is becoming legal in many states here. Hopefully,in Australia soon!


  • aussie-cat
    aussie-cat Member Posts: 5,499
    edited August 2018
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    Thanks, Barbara. I hope so.

  • Calee65
    Calee65 Member Posts: 41
    edited August 2018
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    Nash...I’m supposed to do the Botox injections this Thursday. When you had your injections...did they inject deep into your chest or more toward the surface? I’m nervous about getting them...just not sure what to expect. Mine are deep in the chest, so I’m under anesthesia for it, I’m just praying it helps with the tightness

  • nash
    nash Member Posts: 146
    edited August 2018
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    Calee--my injections were near the surface. The dr was afraid of hitting my lung. I had them done on my back and side only (I had LD flap reconstruction, so my tightness is front, side and back).

    I didn't know the injections could be done under anesthesia in order to get very deep. That's actually something that I probably need. What kind of dr is doing that for you? I had my botox done by a neurologist, and my TPI by a pain clinic tech.

    Good luck, and please keep us posted if they work.

  • Calee65
    Calee65 Member Posts: 41
    edited August 2018
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    Nash, I’m going to a Pain Mgmt Dr. finger crossed! I’ll post after it’s done

  • klgnyc
    klgnyc Member Posts: 26
    edited August 2018
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    Calee, I did Botox, twice, and it didn't do a thing for me, but it does absolutely work for some. Mind you, I've also done just about everything else and nothing has helped, so clearly I'm an outlier ;)

    Needles are pretty small and it's not very painful, especially in the scheme of what we've all been through. Injections were on the chest wall above the impants and then on the sides, past impants, near ribs. Maybe two or so per side, if I'm remembering correctly.

    Good luck. I really hope this works for you.


  • klgnyc
    klgnyc Member Posts: 26
    edited August 2018
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    Barbara, I feel like I'm right there with you, and I'm so very sorry your journey has been so difficult.

    Double mastectomy, chemo and radiation, three+ years ago and not a moment without pain since. Everyone kept telling me it was the expanders, but we swapped those out prior to radiation and it was no better. Then the plastic surgeon said it was the radiation, but the tingling around each breast and the constant squeezing iron bra feeling are really even on both sides. I've done PT for a year and half, massage, topical cream with lidocaine and other meds, acupuncture, Botox (twice), nerve blocks, a spinal block, Lyrica (made me loopy) and revision surgery in which they removed the impants and put new ones over the muscle.

    I'm still in pain and now on a very low dose of gabapentin which doesn't work very well, but the higher dose makes me so exhausted and I'm afraid to go off completely and be miserable again. I'm working with a therapist and doing hypnosis which seemed to be helping, but the past few weeks have been less effective. I'm taking CBD oil at night, but THC apparently lowers the efficacy of the lovely Tamoxifen I'm taking so...

    It's awful to think it will always be like this, and I'm sure you feel the same.

    I'd take the impants out in a heartbeat if anyone thought that would help, but none of my docs think it will - they're assuming the damage is from the surgeries and another won't help. So, when these things reach the end of their shelf life and have to come out, they won't be replaced. I often wonder if I'll feel better and then curse myself for not having removed them sooner. No way to know, right?

    I'm praying for you, and grateful to hear that you finally found something that helps a bit. It gives me hope.


  • BarbaraT54
    BarbaraT54 Member Posts: 11
    edited August 2018
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    Thanks for replying. It’s so frustrating to be in pain like this. People have no idea, and I hate dwelling my family. The dr had me on 1800 mg gabapentin. Just mad me feel weird. I don’t have implants to remove, but it feels like I need to take off this super tight bra and girdle :)

    Are you BRCA positive? I took Tamoxifen for about 4 years prior to the mastectomy, before my high risk oncologists recommended it.

    I’ve thought about hypnosis- do you think it’s been worth it?

    I feel your pain :) - it so sucks. I’m glad you didn’t get the FLAP, because if you are prone to this pain as a result of surgery, then you would also have the abdominal pain. I asked my Drs about nerve blocks and Botox, but unless they can numb my entire torso wouldn’t help.

    The one silver lining is when I’m dwelling on this, it distracts me from my next CA125 blood test for ovarian cancer!

    I try to focus on the positive and happy to be here every day- but I would love to feel “normal” again.

    One thing I have learned is you can’t get enough opinions. If your intuition is telling you not to wait, maybe seek out a dr at another hospital.

    Where do you live? I’m in Philadelphia and had the “ top Doc” do my surgery. He was so arrogant. He told me he could “ Lipo” the swelling away and said “ no such thing as breast lymphedema” existed.

    Aesthetically, he did a great job and that’s all he cared about. No interest in after pain. But, after 5 years I’ve almost let that go. Like the 5 Drs who missed my ovarian cancer. 😳

    Praying for you to enjoy some pain free time !

    Best,

    Bar


  • Calee65
    Calee65 Member Posts: 41
    edited August 2018
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    Nash, klgnyc,

    I had the Botox on Thursday...under anesthesia( because he was going deep for only 10 minutes, 15 injections at trigger points across my chest. Didn’t know it takes 3-10 days to feel the effects...today is day 3 and I can’t tell anything yet. Still hopeful it will help!

  • nash
    nash Member Posts: 146
    edited August 2018
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    Thanks for the update, Calee! My neuro had told me it could take a month to feel effects, so who knows!

    I just got my second round of Botox today. She increased the number of units, and only injected into my back. The LD flap side of my back has been in constant spasm since the surgery May 2015. She thinks maybe my back muscles are affecting my front and side.

    If the Botox doesn’t work, I give up. I’ve tried almost everything, and now that I’m stage IV, I want to minimize time spent in drs offices.

    I’m sorry there are so many of us in this pmps boat.



  • klgnyc
    klgnyc Member Posts: 26
    edited August 2018
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    Wow, Calee, that's lots more Botox than I got. I'm praying it works for you, and I'm also going to ask my doc why he didn't give me that much. Maybe it would have made a difference ;)


    K

  • everymoment
    everymoment Member Posts: 6,656
    edited August 2018
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    Thank you Calee, Barbara..., klgnyc and others for sharing your stories about your painful post mastectomy pain and all the treatments you have tried. Every time I read this I look for some encouraging success story, but so far nothing consistent. I'm three years post mastectomy without implants and like each of you live with daily pain. I do take Neurontin and have for the most part adjusted to the grogginess which varies daily as I vary my dose depending on the pain level. Rarely do I skip a day and vary between 300-1200mg a day. I have noticed some relief with OTC ibuprofen but must switch to acetaminophen [Tylenol] so as not to increase bleeding risk with by blood thinner. Nash, I hope you get relief from your pain with the Botox.

  • nash
    nash Member Posts: 146
    edited August 2018
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    magiclight, thank you. I think about you often and wish you could get some relief.

    I’m happy to report that the day after the second round of Botox that I *think* it’s taking the edge off of my back tightness/spasms. I will report back if it’s a consistent trend this week and if it helps my front/side at all


  • klgnyc
    klgnyc Member Posts: 26
    edited August 2018
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    Magiclight, I'm sure you've described your pain in prior posts, but do you mind sharing what it feels like again? I want these things OUT and I'm wondering if your pain is similar to mine even without impants.

    Gosh, so many of us are just grasping at straws, aren't we?

    If someone had told me this journey would look like this, I definitely would not have done recon. And all the feel good, Susan G. Komen, wear pink for breast cancer stories tell you how you have some surgery, throw in some implants, and go on with your life. Yet all of us are in pain and none of us can put this in our rear-view mirror so it's really hard to go on with our lives. I'd be happy to feel 25% better which is a pretty low bar, and I'm sure you all feel the same...

  • aussie-cat
    aussie-cat Member Posts: 5,499
    edited August 2018
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    I'm sorry for all the women who are still in so much pain. I am ten weeks post mastectomy and my pain is not nearly as bad as it was a few weeks ago. The Lyrica, menthol gel and massage have been helping and I hope they will continue to reduce the pain even more. I wanted to give hope to those who need it.

  • nash
    nash Member Posts: 146
    edited August 2018
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    I so wish I was one of those women who was helped by anything. Lyrica, Gapabentin, massage, acupuncture, hypnosis, time, etc.

    I have no doubt that my LD flap/PMPS/reconstruction revision woes directly contributed to my current Stage IV diagnosis. I was originally diagnosed in 2007. Recurred locally in 2015. Unilateral LD flap reconstruction, which was a complete disaster for me physically. The lift on the native side a year later masked my new primary. It quickly spread to my brain, most likely a combo of the stress from the PMPS/LD flap debacle and the inflammation from the lift.

    I'm happy for the women who get better with time and the run of the mill therapies. I'm obviously an outlier.

  • BarbaraT54
    BarbaraT54 Member Posts: 11
    edited August 2018
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    Hi- I am so sorry for what you are going through. My pain and lymphedema are a product of a prophylactic double mastectomy with a FLAP, as I had ovarian cancer twice and am brca positive.

    I’m sure your Drs would never admit the role the surgeries had regarding your recurrence. My plastic surgeon told me he could fix my pain and swelling with liposuction.

    I’ve tried everything too- medical marijuana helps a little at night. Have you tried ?

    My thoughts and prayers are with you.

    Best,

    Bar