Jenny

I have had something similar happen to me. My story it is a bit different, but it makes me wonder. I had lupus for years before I got cancer and the lupus caused me to have several bouts of shingles. For the past year or so before cancer diagnosis...I have had a pain under left arm (same side as breast cancer) especially when wearing bra. The pain then started moving around to back and under shoulder blade. I was told this pain was caused by shingles post herpatic nerve pain and could go on forever. it was livable because when at home I took bra off and it didn't hurt as badly.

After my cancer diagnosis I was worried sick the pain had been related all along, but I have been reassured over and over it isn't related. Oddly after my double mastectomy the whole area was numb and the burning pain mostly went away. It was there, but not anything like before. I had really quick expansions...like done in 5 weeks after surgery. My last expansion was Monday before this last. The next day I woke up with that area literally on fire. It felt like I was being burned by scalding water. It did that for several days and is still to some extent, but not nearly as bad. I am not seeing the plastic surgeon for 6 more weeks since he is done with my expansions but I started chemo yesterday and asked my oncologist about it. She said it was probably nerves regenerating and that the shingles nerve pain may be returning. She is afraid I will get another bout of shingles from the chemo stress so she put me on Valtrex and prescribed numbing patches. Drug store was out of the patches, but I have started Valtrex. She said if this doesn't work she will try Lyrica or another nerve medication.

I didn't realize that nerve regeneration could cause such burning pain so maybe mine is not totally related to shingles. It just seemed coincidental that it was in the same exact area it was before I had surgery. 

Best wishes to you and I hope you can find some relief. 

 

 

Hi Shirl

Thank you for your reply. I have dealt with this pain since June 2012 basically in silence and I am finally so happy to be able to correspond with people who are in the same boat as me and understand. Everyone sees you from the outside and don't think there is anything wrong and after 2 years they also think you should move as everything should be fine by now but they really have no idea!

All your comments are so relevant and true but somehow we have to go on although there are days when you ask all those questions you have said. I do accept what has happened but would just like to be pain free so I can get on with things better like looking after my grandchildren and exercising more etc. I also have a 4 year old grandson who was 21 months old when he was diagnosed with a 9 cm ependymoma brain tumour 4 months before my diagnosis so compared to him I am lucky. He will always come first - cancer shouldn't happen in children - so unfair. We still have him although he is still tube fed and doesn't speak and has now been diagnosed with autism but he is most amazing gorgeous little boy ever as are his parents and he can work an ipad!! They ahve set up the "Ethan Davies Scholarship for Research into Brain Cancer " - look it up and you can read all about him. He gives me strength.

After seeing my surgeon yesterday I feel much better about things and it will be another 4 months on the waiting list before I can get in anyway so more time to heal and my Dad has just been diagnosed with Melanoma cancer so I will be doing more running around with him and I need the extra time to do that.

 

Kind Regards

 

Jenny

Hi Tonya - thanks for your email. I had full node clearance (19 in total) and the cut was reopened 8 days after the original lumpectomy for the mastectomy as I had a small deposit in one node. I immediately had horrendous "cording" that brought me to tears and severe neuropathic pain all over my arm and on my elbow (I can't rest my elbow on anything). I eventually saw a Pain Management Specialist and tried Lyrica but it didn't suit me so I am now on 800 mg of Gabepentin daily (could take more but try not to). It doesn't stop my pain but it has improved by 50% but is worse at night. I have trouble sleeping and have a pillow under my arm and use Lignocain government approved pain patches. They don't do much but feel nice and cool. I have had a 2 hour Lignocain infusion but that didn't do anything either. It is 2 years in June since my mastectomy and they say it can take years for damaged nerves to regenerate and sometimes they don't which I suspect is in my case.

I actually saw my plastic surgeon again yesterday (third visit in 15 months as he would even consider surgery earlier due to my pain) and after talking to him a bit more I feel much better about having the reconstruction and have decided to go ahead with it for my self esteem. He actually suggested that he may be able to open up again in my armpit and remove scar tissue which is probably causing a lot of the problems I have there which made me feel optimistic. Nothing can be done for my arm and elbow neuropathic pain but if at least one problem can be helped I am vey grateful. I am going to Sir Charles Gairdner Hospital and he said it is the best hospital in WA for this type of major surgery - he is doing a DEIT trans flap due to the issues with my arm, Unfortunately although I have been on the waiting list for 6 months I will have to wait about another 4 months but it's probably just as well as my Dad has been diagnosed with Melanoma cancer and I have been rushing him around and there is more to come.

Once again many thanks for your reply and suggestions - it's nice to correspond with people who understand.

Jenny

Sorry to hear about your ongoing pain.I had a mastectomy in 2010(previous lumpectomy,full node clearance and radiation in 2003).I get a lot of discomfort- like I have a rolled up newspaper under my arm and duck tape across my chest.My surgeon says I have adhesions and lymphoedema in my armpit.She said that a Diep recon might actually help the chest discomfort.I have a friend who gets dreadful nerve pain under her arm and she says the drug, Lyrica has helped.So I'm not sure exactly where your pain is or what recon type you want?It's good you've had some improvement with the pain.Let us know abit more detail and perhaps some other ladies here can also help you. Tonya xx

Sorry to hear about your ongoing pain.I had a mastectomy in 2010(previous lumpectomy,full node clearance and radiation in 2003).I get a lot of discomfort- like I have a rolled up newspaper under my arm and duck tape across my chest.My surgeon says I have adhesions and lymphoedema in my armpit.She said that a Diep recon might actually help the chest discomfort.I have a friend who gets dreadful nerve pain under her arm and she says the drug, Lyrica has helped.So I'm not sure exactly where your pain is or what recon type you want?It's good you've had some improvement with the pain.Let us know abit more detail and perhaps some other ladies here can also help you. Tonya xx

Hi there Jenny ... I can honestly say I have not felt pain to the extent you have .... you must feel that there is no end to it !!!

I had a mastectomy/gland removal in 2010 and although I experienced the normal discomfort/pain it was nothing compared to what you are going through.

I am at present waiting for a knee replacement and the pain factor has really kicked in to the extent that my pain management comprises Norspan patches and alternate pain medication.

I understand how living with pain 24/7 can affect you both physicaly and mentally.

I didn't opt for reconstruction but can understand your fear of more ongoing pain.  Is it necessary to have the recon soon or can it be put off for a while longer giving your body extra time to heal?  Just a question re your fears (please don't be offended)... has your pain management specialist suggested that you speak to a phycologist (not a psychiatrist) as to ways to help face your fears?

I have days when I think ...."why me? .... when will it end? ...I'm over it"  etc etc and it has been good to go and speak with someone outside  my regular sphere of friends and family.

I know it's easy for me to say, but try to stay positive through this ... look after yourself and remember that YOU are your number one priority

Much Love

Shirl x0x