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Topic: Diagnosing long term pain from lat flap recon and frustration!

Forum: Pain —

Share important questions and provide support to others experiencing breast cancer and treatment-related pain.

Posted on: Sep 4, 2018 11:56AM

CTLMom wrote:

I had lat flap reconstruction 2.5 years ago and I am still dealing with chronic muscle and nerve pain in my back and in the reconstructed "breast". I have tried numerous things to try and help with the various issues involved including radiation damage, scar tissue, adhesions, etc. Recently, I have gone to a neurologist to try and get the nerve pain diagnosed. He was very nice and asked a lot of questions in addition to the 7 page pain questionnaire I filled out. Yet, I barely had any physical exam except for a couple of spots. I had to ask for a johnny because I was in a shirt and bra that made it difficult for him to see the areas I was referring to. I ended up being given a prescription for Gabapentin which did nothing but give me horrible heartburn. I just went again for a follow up. This time there was no physical exam at all except for testing my arm strength. I asked a great deal of questions and was met with mostly "I don't know." for an answer. This visit resulted in prescriptions for Voltaren gel and a low dose of Nortriptyline to try. I was told to call in 3 weeks. Before I left I asked if anyone was actually going to physically look at the mechanics of my back! I was told next time.... I don't want to be taking pills without knowing what is causing the problem in the first place. I do understand that this is not a simple quick process, but I can't image just handing out medications without even looking at the problem areas!!! I am SO frustrated with this whole nightmare!! In addition to a physical/visual exam there are other simple tests that can be done to rule things out before even undergoing an MRI or CT scan of the area. Has anyone been dealing with trying to get answers and just getting medicated instead? I already have pain meds from my GP which I don't take a lot of so at least that wasn't and issue for me to deal with during these visits. I want to not need ANY meds at all!

CTLmom

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Sep 4, 2018 07:37PM nash wrote:

I'm in the same boat. 3.5 years out. Front, side and back are all bad. PS was quick to give Gabapentin which was useless. I’ve tried everything without relief. I now have brain mets so LD things are on the back burner, but I've had repeated breast MRIs that show the front to be just fine.

I just had a second round of Botox injections into my back. My back is in constant spasm on the LD side and my neuro thinks if she can get it to calm down, the front and side will improve. We will see.

Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IV, metastasized to other, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IV, metastasized to other, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Targeted Therapy 7/1/2018 Ibrance (palbociclib) Dx 7/17/2020, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 7/17/2020 Xeloda (capecitabine) Radiation Therapy 7/23/2020 Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy External: Brain
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Sep 5, 2018 10:13AM CTLMom wrote:

Nash,

I'm so sorry you are dealing with brain mets now! You didn't need more stress in addition to the LD flap pain. It seems like there is very little information apart from this site that really touches on the women that have these long term problems after this surgery. The research is very meager from what I can see. Most things talk about how well it works and how few problems there are. I feel the problems are seriously under reported!

I really hope the Botox helps your back pain so that you can focus on the bigger issues. I find that pain has become incredibly distracting in my day to day life so I can only image how you must be feeling. However, looking at your history you are clearly a fighter. I'll wait to hear how the shots work.

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Sep 5, 2018 02:57PM nash wrote:

CTLmom, thank you, and I will let you know if the Botox works. Apparently it takes a few weeks to kick in.

I agree about the lack of research and info. It’s frustrating. My PS acted like she’s never seen a patient in my state before. I always marvel that there are women who do well with this surgery, bc it essentially ruined my body permanently. Had there been some info out there at the time that pointed to the potential permanent issues I ended up with, I never would have gone through with it.

Stage IV Pleomorphic ILC, initially diagnosed at age 38 Dx 6/7/2007, ILC, Left, 2cm, Stage IV, metastasized to bone, Grade 2, 0/4 nodes, ER+/PR+, HER2- (FISH) Surgery 7/19/2007 Lumpectomy: Left; Lymph node removal: Sentinel Chemotherapy 8/1/2007 CAF Radiation Therapy 12/27/2007 Whole-breast: Breast, Chest wall Hormonal Therapy 3/1/2008 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Dx 4/24/2015, ILC, Left, 1cm, Stage IV, metastasized to other, Grade 2, 0/10 nodes, ER+/PR+ Surgery 5/15/2015 Mastectomy; Reconstruction (left): Latissimus dorsi flap Dx 2/1/2018, ILC, Right, 6cm+, Stage IV, metastasized to other, Grade 3, ER+/PR+ Chemotherapy 2/15/2018 Cytoxan (cyclophosphamide), Taxol (paclitaxel), Taxotere (docetaxel) Dx 6/20/2018, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 3, ER+/PR+ Targeted Therapy 7/1/2018 Ibrance (palbociclib) Dx 7/17/2020, ILC, Both breasts, 6cm+, Stage IV, metastasized to brain/bone, Grade 2, ER+/PR+, HER2- (FISH) Chemotherapy 7/17/2020 Xeloda (capecitabine) Radiation Therapy 7/23/2020 Hormonal Therapy Faslodex (fulvestrant), Zoladex (goserelin) Radiation Therapy External: Brain

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