Post mastectomy pain

[harrie]

Has anyone out there experienced chronic post-mastectomy pain? I am not speaking of the normal temporary discomforts of healing, I am talking about the chronic pain that will continue a year or more after the mastectomy. The pain is significant enough where even clothes rubbing the area can be painful. It is not a common occurance.

If anyone has experienced this, I would like to hear from you.

Thanks,
Maryanne

[AnneRM]

Hi Maryanne,

It's been 10 months since my mastectomy and certain clothes bother it. My worse emeny in my bra. Today I notice myself when I was out shopping in the mall, that I was pulling and trying to move my bra in a comfort position. Caught myself and hope there was no one behind me or any camera from the store on me. When I am home I go without, until someone comes to visit.

I usually were a lose t-shirt when I am home and even then it feels that something like a dried up leave has falling down my shirt, but it is usually the chest on the t-shirt rubbing on my incision.

I am glad I read your posting because I was thinking that maybe I done something wrong and I wasn't healing right. I quess I am not alone.

Take care,
Anne

[harrie]

Hello Anne,
10 months.....does it feel like it is getting better?
The reason I am asking is because there is this condition called post-mastectomy pain syndrome. And it is mainly found in younger people with mastectomies. I am actually writing for my friend. She is 34 yrs old and has been experiencing this for about 1 1/2 yrs. That is how long ago her mastectomy was. She has done quite a lot of research on it and is currently seeing a physical therapist for this pain as well as lymphedema. She is on pain meds on a daily basis. Are you on any pain medication?

She has been intested on contacting others experiencing this same condition. There are not many out there experiencing pain beyond the normal amount for recovery.

My friend is not a member of HER2support. But if you would like to contact her, I am sure I can arrange an exchange of emails or whatever the two of you would like to do. She lives in So California and is a really nice person and very well informed. She was one of my main supports this past yr when I had my mastectomy and chemo.

I hope your pain diminishes on its own and you become fully recovered.

By the way, she said clothes really bothered her also. Not only the bra which she would take off asap, but even like a t-shirt rubbing against it would cause considerable pain. Even a sheet on the bed can not rub against it.

Maryanne

[michka]

Hi Maryanne,
I had my mastectomy 9 months ago. I have severe nerve pain in my arm since. Like burning, stabs, electric chocs. I couldn't touch the inside of the arm with clothes. I take Neurontin every day. it works except I have tingles in the hand. And I often feel drunk.The doctors told me it was because they had to cut a nerve when they removed the axillary nodes. They first said it would last a couple of months, then nine months, now they are saying one or two years and one even said for life. It is very difficult to support this chronic pain. If anybody has this experience, I would be grateful if they could share it. Is there any hope to see this pain decrease in time? Has the surgeon messed up?
Michka

[harrie]

Gabapentin Pain Treatment References http://www.drgarymellick.com/gabapentin_references.htm

Researchers to study pain after breast cancer surgery http://www.abdn.ac.uk/mediareleases/release.php?id=681

Chronic Pain After Surgery:
<TABLE class=EC_MsoNormalTable style="WIDTH: 469pt; COLOR: rgb(0,0,255); FONT-FAMILY: arial; BORDER-COLLAPSE: collapse" cellSpacing=0 cellPadding=0 width=625 border=0><TBODY><TR style="FONT-FAMILY: arial; HEIGHT: 14.25pt"><TD style="PADDING-RIGHT: 0in; PADDING-LEFT: 0in; PADDING-BOTTOM: 0in; WIDTH: 469pt; PADDING-TOP: 0in; HEIGHT: 14.25pt; BACKGROUND-COLOR: transparent" width=625>http://bja..oxfordjournals.org/cgi/reprint/87/1/88.pdf

Psychological and Social Factors That May Increase the Risk of Developing Chronic Pain After Surgery in Women With Breast Cancer (Ongoing Clinical Trial)
http://clinicaltrials.gov/ct/show/NCT00466830



</TD></TR><TR style="FONT-FAMILY: arial; HEIGHT: 14.25pt"><TD style="PADDING-RIGHT: 0in; PADDING-LEFT: 0in; PADDING-BOTTOM: 0in; PADDING-TOP: 0in; HEIGHT: 14.25pt; BACKGROUND-COLOR: transparent">Post-Mastectomy Pain Found to be Common: Treatment Options Sparse, but Growing http://jnci.oxfordjournals.org/cgi/content/full/90/10/731
</TD></TR><TR style="FONT-FAMILY: arial; HEIGHT: 14.25pt"><TD style="PADDING-RIGHT: 0in; PADDING-LEFT: 0in; PADDING-BOTTOM: 0in; PADDING-TOP: 0in; HEIGHT: 14.25pt; BACKGROUND-COLOR: transparent">
</TD></TR><TR style="FONT-FAMILY: arial; HEIGHT: 14.25pt"><TD style="PADDING-RIGHT: 0in; PADDING-LEFT: 0in; PADDING-BOTTOM: 0in; PADDING-TOP: 0in; HEIGHT: 14.25pt; BACKGROUND-COLOR: transparent">Application of Medical Message in the Treatment of Post-Mastectomy Pain Found Pain Syndrome
</TD></TR><TR style="FONT-FAMILY: arial; HEIGHT: 14.25pt"><TD style="PADDING-RIGHT: 0in; PADDING-LEFT: 0in; PADDING-BOTTOM: 0in; PADDING-TOP: 0in; HEIGHT: 14.25pt; BACKGROUND-COLOR: transparent">http://journals.indexcopernicus.com/abstracted.php?icid=443540

Post Mastectomy and Phantom Breast Pain: Risk Factors

</TD></TR><TR style="FONT-FAMILY: arial; HEIGHT: 14.25pt"><TD style="PADDING-RIGHT: 0in; PADDING-LEFT: 0in; PADDING-BOTTOM: 0in; PADDING-TOP: 0in; HEIGHT: 14.25pt; BACKGROUND-COLOR: transparent">http://stinet.dtic.mil/oai/oai?verb=...fier=ADA420279
</TD></TR><TR style="FONT-FAMILY: arial; HEIGHT: 14.25pt"><TD style="PADDING-RIGHT: 0in; PADDING-LEFT: 0in; PADDING-BOTTOM: 0in; PADDING-TOP: 0in; HEIGHT: 14.25pt; BACKGROUND-COLOR: transparent">
Cancer Compass Message Board (PMPS)

</TD></TR><TR style="FONT-FAMILY: arial; HEIGHT: 14.25pt"><TD style="PADDING-RIGHT: 0in; PADDING-LEFT: 0in; PADDING-BOTTOM: 0in; PADDING-TOP: 0in; HEIGHT: 14.25pt; BACKGROUND-COLOR: transparent">http://www.cancercompass.com/message-board/message/all,1081,0.htm

Post Breast Therapy Pain Syndrome

</TD></TR><TR style="FONT-FAMILY: arial; HEIGHT: 14.25pt"><TD style="PADDING-RIGHT: 0in; PADDING-LEFT: 0in; PADDING-BOTTOM: 0in; PADDING-TOP: 0in; HEIGHT: 14.25pt; BACKGROUND-COLOR: transparent">http://www.cancerlynx.com/syndrome.html

Post Breast Therapy Pain Syndrome: The Patient's Perspective

</TD></TR><TR style="FONT-FAMILY: arial; HEIGHT: 14.25pt"><TD style="PADDING-RIGHT: 0in; PADDING-LEFT: 0in; PADDING-BOTTOM: 0in; PADDING-TOP: 0in; HEIGHT: 14.25pt; BACKGROUND-COLOR: transparent">http://www.cancersupportivecare.com/mastectomypain.php

Post Breast Therapy Pain Syndrome

</TD></TR><TR style="FONT-FAMILY: arial; HEIGHT: 14.25pt"><TD style="PADDING-RIGHT: 0in; PADDING-LEFT: 0in; PADDING-BOTTOM: 0in; PADDING-TOP: 0in; HEIGHT: 14.25pt; BACKGROUND-COLOR: transparent">http://www.cancersupportivecare.com/neuropathicpain.html


</TD></TR><TR style="FONT-FAMILY: arial; HEIGHT: 14.25pt"><TD style="PADDING-RIGHT: 0in; PADDING-LEFT: 0in; PADDING-BOTTOM: 0in; PADDING-TOP: 0in; HEIGHT: 14.25pt; BACKGROUND-COLOR: transparent">Preemptive Analgesia on Post Mastectomy Syndrome with Ibuprofen-Arginine
</TD></TR><TR style="FONT-FAMILY: arial; HEIGHT: 14.25pt"><TD style="PADDING-RIGHT: 0in; PADDING-LEFT: 0in; PADDING-BOTTOM: 0in; PADDING-TOP: 0in; HEIGHT: 14.25pt; BACKGROUND-COLOR: transparent">http://www.jle.com/en/revues/medecine/bdc/e-docs/00/01/11/B9/resume.md

BPS 2007 Conference (Post-Surgical Pain in Breast Cancer)

</TD></TR><TR style="FONT-FAMILY: arial; HEIGHT: 14.25pt"><TD style="PADDING-RIGHT: 0in; PADDING-LEFT: 0in; PADDING-BOTTOM: 0in; PADDING-TOP: 0in; HEIGHT: 14.25pt; BACKGROUND-COLOR: transparent">http://www.library.nhs.uk/palliative/ViewResource.aspx?resID=260510&tabID=290

Post Mastectomy Pain (Intro, Causes, Diagnosis, Treatment, Medications)

</TD></TR><TR style="FONT-FAMILY: arial; HEIGHT: 14.25pt"><TD style="PADDING-RIGHT: 0in; PADDING-LEFT: 0in; PADDING-BOTTOM: 0in; PADDING-TOP: 0in; HEIGHT: 14.25pt; BACKGROUND-COLOR: transparent">http://www.londonpainconsultants.com/articles/2006/10/15/post_mastectomy_pain/

Lyphovenous Canada (Neuropathic Pain Syndromes)

</TD></TR><TR style="FONT-FAMILY: arial; HEIGHT: 14.25pt"><TD style="PADDING-RIGHT: 0in; PADDING-LEFT: 0in; PADDING-BOTTOM: 0in; PADDING-TOP: 0in; HEIGHT: 14.25pt; BACKGROUND-COLOR: transparent">http://www.lymphovenous-canada.ca/paincan.htm

Long-Term Follow-up of Breast Cancer Survivors with Post-Mastectomy Pain Syndrome

</TD></TR><TR style="HEIGHT: 14.25pt"><TD style="PADDING-RIGHT: 0in; PADDING-LEFT: 0in; PADDING-BOTTOM: 0in; PADDING-TOP: 0in; HEIGHT: 14.25pt; BACKGROUND-COLOR: transparent">http://www.nature.com/bjc/journal/v92/n2/full/6602304a.html

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[harrie]

Anne and Michka,
As you can see, Marisa has really done a lot of homework!
Take care,
Maryanne

[michka]

Thanks Girls!
I know I am not alone. It is so important.
Michka

[harrie]

Yes Michika, you are not alone and it will be good to share information with others in your situation. It is not all that common an occurance so it is good that you found someone like Anne and Marisa. I hope you contact Marisa because Marisa is anxious to talk to someone with her similar condition and I bet she has a lot of good info to share with you.
Take care.
Maryanne

[AnneRM]

Hi Maryanne,
Sorry, I couldn't get back right away. I received a message from you, but my computer would not let me open it. I don't go on the computer alot because I am on dial up and everything takes do long. Sometimes it takes me 15 minutes to get on line. Away I love to get in contact with Marisa.

RM in my name stands for right mastectomy. I figure there would be more that on Anne on this site. So, I have pain on my right from the mastectomy and on my left I have pain from my a port-a-cath. The port was insert in Feb 07 and has been uncomfortable ever since. As the days went on I had a hard time breathing. It wasn't fun when 45 minutes away from the hospital and you are alone. Anyway they found out in ER that I had a punture lung from the procedure with the port. That included a 4 day hospital stay.

On Oct 24 I had my 7 herceptin treatment, they weren't sure if they were going to give me the treatment because my pressure was down and I am having dizzy spells and headaches. So they are booking me in for a Muga which I wasn't due for one until Dec. and a CT of the head. They check my blood work and everything was fine, so I got my treatment. I have noticed after treatment my port hurts more than usually. I usually hurt from my port to the collar bone and up my neck to my ear. Have you heard of anyone with this problem. So, not only does my mastectomy hurt, the port also. Can't sleep on either side.

Ask Marisa when she touches the chest part of the mastectomy does she fell it under the arm. I find that very strange.

Hi Michka, I also have burning. The surgery that done my mastectomy pulled the chest really tight. It still feels like a tight rubber band around half my chest. It even feels tighter that a bra, but now I am not trying to pull it down. lol I spoke to my surgery a couple of weeks ago and I asked when I would get some relief. She said give it a year and it should be better. I still do my exerise......most days away.

No, I am not on any meds. I was for the pain in my legs, but I didn't have a clear head until noon. If you seen me out side the following morning you would think I was half in the bag. So, now I just put up with the pain. I was on warfrin for 6 months for the blood clot in my leg, but not since Aug. I am really having a hard time with my legs.......anyone want them.

Thanks for listening and I hope I didn't go on too long.

So glad to be a sister on this site. Thanks to AlaskaAngel who directed me to this site from bcans.

Many blessings,
Anne

[Mar]

Hi!
I had Her2/neu with overexpression, 3 lymph nodes positive, breast cancer, hormone negative. I took Adriamycin, Cytoxan, and Taxotere.
I suffer intense SEVERE pain in my arms, legs, and groin that feel like I am being shocked(like nothing I have ever experienced) and it burns like fire. I also have lymph edema that spreads out into my chest and back area by afternoon time.
What a position to be in in order to be alive!
I am sorry you sffer too but I have found out that more women suffer the effects of Taxotere than medical people want to admit. They think that if they keep records of all of us who suffer this chemo induced nerve damage, called Neuropathy, they would have a more difficult time getting us to take it. Therefore they would save fewer women. I am telling you, from more than three years of research into this, that is my opinion. Throw into the mix the money that is made off these Taxanes, and you complete the picture.
Nerves don't regenerate so there isn't much hope at this point I will get over my Neurpathy. But, I AM thankful to be alive, and able to enjoy my husband and my family. That is 3 years, post chemo. I suffer but I am alive, and cancer free, as of my last body scans and test three months ago. I have to take medicine for the pain so that helps me but it never goes away, even with the medicine. Neurotan or the other meds. given for this condition haven't helped me either. Glad I am such a strong woman with my faith and a happy and warm personality to steady me as I walk this path with lots of love from my dear family.
Good luck to you. Think of me and the other undocumented women who suffer the hell of these long term severe side effect as you make your way through your days and nights. We are with you in our thoughts and prayers. Mar

[theresaw]

I have, but my pain is a reacurring shooting pain thru my breast. I also have it on the right side(no bc), which worries me because I can remember getting those pains in the left side before i even thought of bc.

[Joanne S]

Harrie, Thank you and Michika a million times!!!

This is a tremendous amount of research and extremely valuable info. Very Much Appreciated. I too suffer terribly from PMPS and have done hours and hours of internet research, but somehow Michika managed to find even info.

I've been miserable for several months. I went to a physiatrist, who specializes in women with lymphedema and PMPS. I am now taking Neurotin and Motrin. Additionally, along with doing daily stretches, I go to physical therapy 3 times a week. It includes stretching, exercising, including myofascia (spelling) release performed by the physical therapist, and neck traction. I am finally getting some relief.

See my response to TriciaV's post. Click: TriciaV, To me, your symptoms...

Perhaps you and/or Michika could check out TriciaV post--click: Need Help...anyone please!!!!
to see if it sounds like possiblly PMPS to either of you.

THANKS AGAIN,

[harrie]

I could be mistaken, but I believe TriciaV's bone pain is different from the PMPS. TriciaV's pain may be from the medication she has taken such as the herceptin. PMPS is pain resulting from surgery.
Maryanne

[Joanne S]

Yes, I went back and read her post again. You are correct. Thanks Harrie.

[MCS]

I am a little late writing but this is so timely, it's unbelievable.

I had a mast on rb when dx in 9/05

then I had a prophilactic mast on lb in 4/07.

When the weather is bad, like damp weather,my implants hurt like crazy-like arthritis pain. like this past week with the rain ( it rains once a year here in california

I also get just sore pain all the time, where it's unconfortable to lie on the side. and i wonderwed whether the hollywood people who get implants just to grow, also got this kind of pain. or is it that we have it because the muscle and mass is being traumatized.

I have been a little hesitant to bring this up. I thought, maybe it could be an allergic reaction? but then, I would definitely had turned red on the skin.

then of course we have gone thru so much, that I hate to whine about this

I am very little. I have a 34b. so my next thought was that since there's such little room to expand, my inplant is too close to the breast bone and thus it hurts.

I also get pain on the side towards the back. this gets a little better when massaged- I don't suffer from lymphodema.

let me know if you have any thought.

good thread. this one will be seen often. thank you for the references

xoxox

maria

[MCS]

oops forgot to tell.

it gets itchy inside. of course scratching doesn't do much

maria

[theresaw]

I was told by a friend that the difference btwn us getting implants and civilians is that we have no muscle to support the implant that is why it hurts, people who just want to increase their breast size still have their breast muscle, we don't. That is why I chose to have the reconstruction with a tramflap (tummy muscle) so that is is still muscle and nothing artificial. I get some discomfort but my Onc said it is just my nerves waking up.

[harrie]

Maria, exactly what kind of reconstruction did you have for both of your breasts? I know you have implants but did you also have something else? Our friend had the tram flap and I had the DIEP flap reconstruction. At the time of my second stage of my reconstruction, I had silicone implants put in. That was this past Sept. in Torrance, CA. (I am also small in stature and am a small to medium B cup now....34A - 32B around there)
Your pain sounds different from the typical post mastectomy pain syndrome, although I wouldn't rule it out completely. Sounds like you are getting pain from the implant itself. Did you mention this to your plastic surgeon?
Harrie

Hello. I just wanted to invite anyone with Post Breast Therapy Nerve Pain to join my new Facebook group called Post Breast Therapy Pain Syndrome. Thank you : )


http://www.facebook.com/groups/265320350156856/