Breast cancer and a major comorbidity

There is an existing forum, Mixed Type Breast Cancer or Breast Cancer with Another Diagnosis that includes, for example, threads about breast cancer patients also dealing with HIV, Sjogrens syndrome, MS, Lupus, Rheumatoid Arthritis and Addison's disease.

• The Mods

I'm in!

Seems time, having gone to the link Moderators gave above, to separate that Forum.  Creating a Forum for the cormobidity Athena is describing.  Just as the Complementary and Alternative Forums are now separate.

If I was looking for bc and ------- ( fill in the blank, I'd probably put in depression) I wouldn't have the patience to scroll down that long list in the existing forum.  When a newbie signs on, and is told she can no longer continue to use the antidepressant which saved her life for years because she has to now take Tamoxifen, she would be directed to a Forum that would address issues just like that.

Or further on in treatment, there are so, so many situation where taking, or not taking, hormonals, can really mess with exisiting diseases.

Good luck Athena, I support your request.

Think its a great idea!

I don't know that another forum is needed, maybe just re-labeling the current one to make it clear that it is the place to put threads for those coping with multiple diagnoses.  The current title is a bit confusing.

Many of us cope with a variety of comorbidities that significantly impact treatment decisions, and would never think to look under "mixed type breast cancer" to get information about the interactions. 

Think how much a comorbidity such as impaired cardiac function, or conditions that can cause cardiac damage over time could impact the decisions surrounding chemo and herceptin that are being made at a point when people are still learning how to navigate this site.

Athena, thanks so much for suggesting this.

I do hope we can get a separate forum for Breast Cancer Plus Co-morbidities (or "Breast Cancer with Another Diagnosis").  To be honest, I was quite disappointed last year, when as a new member and the only one here who had HIV, I asked to start a forum on HIV and breast cancer and the mods told me to post in the "Mixed Type Breast Cancer or Breast Cancer with Another Diagnosis" forum.  Consequently, my thread basically got lost in the "mix." 

"Mixed Type Breast Cancer" is one thing.  "Breast Cancer with Another Diagnosis" is entirely different.  As the site grows, I think we really need to separate the two, because there will undoubtedly be more and more people with breast cancer AND a co-morbidity or other diagnosis that affects their treatment.  It would be nice to make it easy for them to find information that relates to their unique situation.

Think about it. We all benefit from reading the posts from those who have already gone through bc treatments. Look at the Prepare for chemo tip list, or Lymphedema precaution info.  This is compiled from past experiences and it has helped many.

Information from others about how their co-mobidity affected/interacted with their bc treatments, in a place easy to find, could be equally lifesaving for many individuals. 

At the very least, it would give members a place to talk to others who are dealing with similar issues. Maybe without having to explain over and over why they are not doing the 'gold standard' treatments and are looking for other answers as to what can best help them.

I'm heartened by all the people who want to see this as a separate forum (including those who don't even have a co-morbidity).  It just seems logical to separate it out, and how hard can it be to do that?

I don't understand why the mods don't want to do that.

Hello all,

I have been a member since 9/23/12. In desperation I had been searching the internet to find someone, ANYONE, like me. A person with cancer and a Dissociative Identity Disorder (DID), sometimes called Multiple Personality Disorder (MPD). What I DID find through searching, was humorous references to having a split personality, etc. Don't get me wrong, my loved ones and I laugh about it, too - how else does one cope? Before I was diagnosed in 1996, my three children loved it when their dad went out of town because "Kentucky Fired Chicken Mom" would show up: she was the one that was younger than my kids and was always willing to let my 16 yr. old buy fast food for us (KFC Mom didn't cook!).

Having a forum such as Athena mentions would have helped me so much; if only to get my thoughts out.  If there had been a forum that was more easily accessible, perhaps others with cancer and MPD would have posted and given me hope.

The AMA states that our physician must fully dislose all of the options available to us regarding our treatment, regardless of whether they perform the option or not.  Seven out of ten women are NOT being given this info about their breast reconstruction. Physicians are further required to help the patient locate and establish with whatever physician they want, even if it is at a different facility. To do otherwise, constitutes abuse of power and trust.

My PS did NOT fuly disclose or fully inform the pros and cons of the options he DID present. In addition, I was lied to about who would do my surgery, about the option for skin/nipple sparing, and then about what was happening to me physically being "normal" for this type of procedure.

I only mention this to explain that this abuse triggered my MPD, REALLY bad.  I trusted my PS to help me; instead, for reasons of his own, he did what, in his mind, was best for him with, what would seem, no considerataion for pre-existing physical conditions that would indicate I was not a candidate for his procedure.  I didn't expect anyone to factor in MPD.  It had been manageable for many years and was not a problem for me.

However, my MPD originated from childhood abuse - emotional, physical and sexual. Children are supposed to be able to trust those placed in a position to provide care and protection from harm.  If those very people don't provide that care and protection but instead put their own wants before that of the child, regardless of the immediate and long term damage to the child, THAT is abuse. The child's life, to some degree, is sacrificed to the abuser's wants.  The message: "You don't matter - I matter.  Your hopes and dreams, your life - they don't count. No one is stopping me, because no one cares about you and you have no value.  And if you say anything, no one will believe you because I am an adult and respected and I will call you a liar. And they will believe ME."

What Dr. S did to me felt like the abuse I had received in the past; the same message, the same betrayal of trust and the same sense of powerlessness.  This along with the constant pain the expanders were causing due to my fibromyalgia, triggered my MPD and out came the little one who carries all of the abuse of my life. She is very little, five or six - maybe younger.  She is shame based; afraid and mistrustful of everyone.  Her whole existence is fear and pain. She thinks if we can gather enough information we can somehow protect ourselves from abuse - if we can see it coming, then we should be able to protect ourselves . . . can't we? But we couldn't when we were little . . .  She can't imagine what we did so wrong that would make Dr. S do this to us. It hurts to breathe.  He put the ports right on our chest bone and we can't even get a hug because it hurts.  He is not nice and he lies and we don't like him. there.

Sorry, now I am little.  But we are working togethr better now.  Everyone was in a safe place with Jesus but then that doctor made us afraid again and we can't sleep with Pete because we can't lay down in the bed because it hurts and we really really miss sleeping next to Pete. I want to make sure that doctor can't hurt other women and I want to tell other women who have many parts like me that it is ok and that it is not their fault and that they are precious and that god loves them like he loves me. I am sad that Dr. S didn't tell us the truth.  We could have been ok by now but we have found a good dr. in miami to start fixing the side that hurts the most on this saturday. he is nice and went to a place in the jungle and operated on many children who had hurt mouths and things. i am sorry about so many people hurting and that some doctors are not nice and doing the right thing. it makes me sad. but i do know that god loves me even though some parts are scared of him because he let his son be killed but we know that big angie isn't scared but she isn't out all the time. scared angie isn't out and that is good. it is awful hard to keep up with things. i like y'all. yu are all very nice to each other and that makes me happy.

i am glad to get to write to y'all but i am afarid to read what someone might say. i'll let pete read it first cause big angie isnt here right now

your friend angie 

Thanks so much, mods!  

(((((angie))))) Thank you for sharing. Wow....I'm just shaking my head in awe of you. I too wish only the best for all of you.

Traci

oh Athena.... you still hate my little pain forum

Good idea though, glad to see it happened!

Hello Athena,

Thank you for your persistence in getting this done! I had mentioned it to the moderators, also, but didn't follow through, like you did. Kudos, to you!

I will try to get the gals over in the "Breast Cancer and Multiple Sclerosis" topic, in the "DCIS" forum, to head over here, instead. That topic is mostly dormant, now. I am sure it is because it is hard to find...and confusing. I only found that topic through a search for "BC & MS", myself.  

Many thanks ~ Shar