PMPS NEEDS ITS OWN FORUM TOPIC

cinnamonsmiles · January 2012

Dear Moderators,

I am writing to you in hopes that you will create a forum for those of with post mastectomy pain syndrome. More and more women are finally being diagnosed with it and coming forward on these boards and I think we are getting lost.

Other than the extremely long thread under Surgery, Before, During and After, there are threads here and there. Just as lymphedema has its own Forum, so should PMPS.

I think PMPS goes beyond the scope of before, during and after surgery topics. There are the symptoms itself, treatments for it, psychological aspects, and long term survivors with it.

I think more women would be able to focus in on it with it being separated with its own heading. Women don't know exactly where to post it and find it. And for those of us who have it long term, I feel we get lost down the list when other posts come up, burying it. And with all the different aspects being discussed, everything gets lost. It would be nice to have one forum allowing us to post differnt topics (pain, living with pain, treatments, etc..). One thread for all those different categories is letting information get lost and confused.

I think the surgical side effect of post mastectomy pain sydrome deserves its own forum just as lymphedema has.

Thank you,

Cinnamonsmiles

Moderators · January 2012

Hi Cinnamonsmiles, and thank you for your suggestion. The team will definitely consider this idea, as we always welcome ideas from members to improve these forums.

In the meantime, I've added "(PMPS)" to the title of that long thread in the Surgery - Before, During and After" forum, and pinned it so it will appear in the first few posts of the forum.

Judith and the Mods

cinnamonsmiles · February 2012

I thank you for putting the PMPs at the top of the lists, but this still leaves a major problem. There are no headings since it is not its own forum. It is such a long thread that women have to hunt through untittled repsonses.

For example, there was a woman who recently posted about some of her problems. It would have been nice for her to find actually topic headings relating to the physical pain symptom others have had, treatments people have had, etc.

PMPS really goes beyond the scope of Surgery-Before, During, and After, just as Lymphedema does. And information is getting lost.

I don't understand what the hesitation is to create a forum for PMPS.

Outfield · February 2012

I came across this thread really randomly. My chronic pain isn't a serious issue for me, but I do see what cinnamonsmiles is saying. It does seem parallel to lymphedema (I also have). I can't think of a nice heading they could be grouped together under, it would have to be a gentler way of saying "Ways Treatment F....'s You Up." Brachial plexus problems are similar, as are shoulder motion problems.

cookiegal · March 2012

Actually Pain Managment would be a reasonable forum, it could include PMPS and other pain issues.

Outfield · March 2012

Cookiegal, that's definitely a "gentler way"!

Moderators · March 2012

Good idea, cookiegal - we'll add this as an option for forum changes/additions too.

Judith and the Mods

1Athena1 · March 2012

We have way too many forums already. It probably helps to explain some of the problems we have of people not posting on the appropriate forum and inadvertently leading to hard feelings.

Pain is everywhere in cancer. You can't really separate it. Nor can you isolate all of the syndromes and complications, unique as they may be in some ways. That is why a good option is to create one's own thread - some threads live quite prominently for years. Good examples are the Bottle o' Tamoxifen one, the Taxotere, Carboplatin & Herceptin one, the HOT FLASH FORUM and the cold caps one.

To the OP: How about opening a PMPS thread in the surgery forum? You may get lots of responses. Good luck and I am sorry that pain has been a problem for you.

Please, mods, not too many forums. We can't please everyone and we already have many that are, frankly, redundant.

cookiegal · March 2012

I certainly don't want to get into a disagreement with Athena.

I will say even though I did not have a mast, I struggled with pain post surgery. Several painkillers and accupuncture did not help, and the pain doctor I went to at MSK was really shockingly ignorant about breast pain. I felt like my incisions were open even when they were healed.

At night there was so much pain I could not sleep and sat up using the BCO chat room.

Ultimately I found a mild anxiety drug did more than even morphine. Was some of it in my head? I will never know.

I really don't care if it's on a thread or a forum. I guess the reason I thought it might make a good forum is like LE it crosses all stages and types of BC.

Techincally it is really part of palliative care I guess. But for those of us with tought to diagnose pain problems it could be a useful resouce.

1Athena1 · March 2012

Ya got a prawablem, cookiegal???

Just kidding! Don't worry about disagreeing with me. Most people do --and on rather crucial things, I find. To the point where I have no idea where most of my views come from. :-)

Hugs to you!

cookiegal · March 2012

at Athena...I got a huge kick out of that.

PMPS NEEDS ITS OWN FORUM TOPIC

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