Figuring it out. 

August brings about the end of summer break for my kids and the anniversary of my diagnosis of breast cancer.  This year will be three years from my diagnosis and sadly I am not in great shape – and it is not where I thought I would be three years out from cancer. 

I had an early mammo in June because I have been dealing with exacerbating nerve pain. So the first thing they rule out was more breast cancer. And the mammo and sonogram – done for safety purposes- were clear. Normally I would post such an event on Facebook and we would all celebrate. But this year I just cannot do it. Its not because I am not thankful for the news I am…but I have too much bitterness right now.

How can one be grateful and bitter all at once? Its rather easy for me. I can separate one from the other. Cancer in breast is gone – yay! But pain that stems from all the breast cancer therapies is as worse as its ever been.

The reason for my bitterness and profound sadness is twofold- the first being that i am not loving being almost bedridden with nerve pain. Too much movement throws me into pain and discomfort so I have basically tabled any fun thus far this summer in order to be able to get through the day with the least amount of pain as I can. So I am pretty bitter, sad and depressed.

The other reason I am bitter is because I began speaking with my doctors about these nerve issues over two years ago. And nobody really listened. Early on they twice tossed me over to the Lymphedema (LE) specialist and I even got a fancy pump for a really mild case of LE and finally the LE specialist told me she couldn’t help me anymore (not her fault- I was not being prescribed the right treatment).

I lived with the pain for a good while after that and from time to time I would try a new doctor or mention it again to another – but by the end of May the pain became more than I could deal with anymore. I needed help. The idea of having to find someone to listen to me and really hear what I was saying was daunting. I had never gotten any help in the past for the pain and I didn’t have confidence in my own cancer doctors to think they would listen.Thats enough to squash a spirit – even one like mine that can put up with quite a bit before it gets squashed. But frankly I have been through ALOT of crap over the last three years and my spirit is beat. The idea of spending my summer and perhaps my life feeling like this was just too much.

The thing was as my symptoms exacerbated they began to look like I had a condition that is not uncommon to woman who have been treated for breast cancer but sadly it is often misdiagnosed and often overlooked.   I had what looked like Post Mastectomy Pain Syndrome (PMPS) it’s also called Post Breast Therapy Pain Syndrome. Basically it is nerve damage of one kind or another that results from breast cancer treatments. It’s can vary in its symptoms and pain levels. I had a couple outlier symptoms too and those were the ones I lived with for the last two years and I can see how these might have thrown docs for a loop but honestly tingling and burning pain is nerve related and after a while someone should know what to do or where to send me. And I now wonder had we addressed these things sooner would i not be sitting here with the escalating pain I have?

I saw many doctors who were very puzzled by my issues.  I felt like I was getting passed around like a hot potato. But as the symptoms began to match those of PMPS I became more adamant and maybe pushy and weepy a few times (I don’t like when I cry in front of my docs BC they see cray cray lady) with my doctors insisting I was not doing well and I needed to be helped ASAP. 

The last thing I wanted to do was to bring up what I think I might have wrong with me with my doctors. But the way I see it is that I am being my own advocate. There isnt any doc going home and doing hours of research on my behalf. So the key is to find someone who will listen to you and the research you have done and want to work with you. Its a needle in the haystack in my experience. 

 We survivors are supposed to suck it up- learn to live with our “new normal” -but my new normal is way worse than my old one BBC (before Breast Cancer). I am willing to suck much of the discomfort up for the result of being cancer free – but I want quality of life too and I think I should be able to have that- or maybe I need to come to the realization that I might not get. But I am not there yet. 

There is that voice that kept telling me to just get on the internet and do what I do best- research.  If anyone out there needs to employ a researcher I am your girl. I have spent hundreds of hours while sitting in bed figuring out who needs to see me. This pain syndrome I have has literature dating back over 14 years. But the problem of PMPS is just starting to become more looked into. But it’s slow going. It’s hard to find the right people. 

My research paid off.  I found that a physiatrist I saw last summer is actually doing research on PMPS treatments. Physiatrists specialize in rehabilitation. I was lucky since I had been to see him last year I got a quick appointment. Last year I didn’t give much of a chance to help me as I wasn’t having as intense pain back then and I was managing it somewhat and was not wanting to do what he was thinking of prescribing for my frozen shoulder on my cancer side.  Bad patient. Since then my shoulder has thawed (which may be why my nerve symptoms  are worse ) and now my other shoulder has frozen. (Lucky me). I also have a broken toe but that’s not even a factor at this point -I just taped them together.  It’s been a cluster around here. really. 

I have now seen this physiatrist again and I am going to see this thing through  with him. He listened to me and asked me many questions. He seems to care. He has done some diagnostic testing and I’m set to get injections in the next couple weeks. We are developing a plan that will include injections and oral meds (which I hate taking so I’m waiting to see how well the injections help) and maybe physical therapy. It will depend on the testing results I suspect. So there is hope but this pain syndrome is complicated as most chronic pain is. 

I’ve looked into alternative treatments too. My TENs machine has been a huge help and I’ve gone to massage and done a treatment on a biomat. I think doing these things has helped me feel less helpless. 

Now that I’ve got someone trying to help me feel better I need to get my mind in a better place. It’s taking some work. And it may be that I need to talk to someone.  I’m feeling a lot of anger and perhaps it’s not only because of the run around I’ve dealt with over this issue but also just the cancer itself. I don’t blame myself for being angry but I also know that talking that out with someone may help move me ahead. 

I also want to be able to cling to hope. For a while I felt hopeless. That’s a scary place to be. I think being heard by a doctor has given me validation. But I know that I may be dealing with chronic pain for good. That’s hard for me to bite off now. I’m hoping that I can get back to things I love like riding my horse and working out. I’ve been walking daily so I don’t go insane. 

I just want to live my life the best I can. I want to enjoy new things and travel. But I don’t want too ahead of myself -just going out to dinner with the family is a good goal now.  

I’m am trying to get the spark back to write because that is something I can still do. Everything just feels off for me now and I’m hoping as I move forward to get myself fixed I’ll start to figure this all out. 

And when I get more details to this story I’m going to let my cancer Doctor know the path I took to get help and perhaps it will help them know what to do the next time a woman comes in and complains of chronic pain. If I could save someone else the frustration of running in circles for years trying to get help when she’s feeling badly then maybe this will have been worth it. 
 

——

Info on PMPS:

This one mentions chest wall pain and tingling which baffled my dos BC I said it made me cough. 

https://www.sharecare.com/health/breast-cancer/what-is-post-mastectomy-pain-syndrome

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http://www.plasticsurgerypractice.com/2012/02/understanding-and-treating-postmastectomy-chronic-nerve-pain/

8 thoughts on “Figuring it out. 

  1. I work at a medical clinic doing referrals, and speak with a lot of chronic pain patients, and have a lot of compassion for where you are right now. I heard about a clinical trial recruiting right now for post breast cancer pain – I think I heard about it on the Dr. Susan Love site.
    It has been such a head trip for me to process all the feelings that have come up about the negative consequences of my treatments. Borrowing misery from the future is a dangerous place – hold on – there is a possible future in which this can be resolved, all of your advocating is drawing it closer.
    Sending well wishes across the blogosphere
    Iris

    • Wow. Thanks so much! For your kind words and the study. I check that out. I know if I don’t have a good mindset I am not doing myself any favors. 💜💜

  2. LynnP says:

    I am so sorry to hear your story. I hope you are finding some relief. Sadly, your story is also my story. My second round of breast cancer in Summer 2013 left me in pain. It took many months for anyone to believe me and longer until they named the issue. I have tried so many procedures to relieve the pain, including a spinal cord stimulator. It has gotten somewhat better, but is still with me all day. I would love to hear how you are doing and if you have found anything that helps. I have not met anyone here that even knows what it is. My surgeons initially acted like I was crazy, it’s been a really long 3 years.

    • Lynn I’m making slow progress but we don’t know if what they are suggesting will help. Now I’m meeting with a surgeon about the possibility of my surgical clips being the issue. Or an issue. I had injections in the last couple weeks that has helped take the edge off but I still have discomfort in the area where the clips are which is under my arm and next to my breast on the chest wall. I have a CT scan today just to rule out Mets and I’ll ask them to note the areas where they see the clips. I have two I think. I also ordered the surgical notes to be sent to my doctor. I’m seeing another breast surgeon since my original one didn’t seem to understand my pain issues. Didn’t even suggest pain mngmt at all. So we will see how it goes:) it’s been tough. Keep trying to find the help you need. Travel if you have to. Some of the teaching hospitals have more knowledge of post mastectomy pain syndrome. I found a physiatrist that is on doing a lot of research in dealing with post cancer treatment pain. I’m on a Facebook group that is for woman with post breast cancer pain. It’s called post breast therapy pain syndrome. It’s a nice group of cancer survivors trying to find answers to their pain issues. Join if you are on Facebook. God Bless.

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