Patient Advocacy Project

[Becky]

First I will start out that all is well. I had a regular follow up with my radiation onc today (not the greatest of ideas when it is your birthday but... it got me out of work early!!!)

Anyway, I know most of you remember about 2-3 months back I had a lump in my other breast that ended up being a cyst. My left breast had dcis diagnosed when I was diagnosed with my cancer. The only reason the "girls" are still around is that I had a duel "lumpectomy - biopsy" and had clean margins so once it was done, I was done. When the time came for radiation, naturally the invasive side was radiated but the small highly hormone positive/her2 negative dcis was not. My radiation onc, onc and a consult from the Univ of PA said that wide excision, small (3mm) low grade, no necrosis dcis didn't need it. However, after I began getting more and more involved with my care, I found study after study saying that no dcis is too small for radiation. I could go on and on but I won't. What's done is done for me. I went over the cyst thing with the radiation onc and he freaked - he said "it didn't have any treatment except excision". I didn't tell him that today was my birthday but did say that that was his and others decision, not mine and I really didn't want to rehash that now. Needless to say, he wants to stay on a 6 month schedule to catch anything that could happen early (chances are actually low).

Anyway, my thought is - how does the Her2 Support Group help women (regardless of pathology) know what they should do. I got 2 opinions but still there were 2003 and 2004 studies stating radiation halves the recurrence rate of dcis (got rads in early 2005 - for my size and pathology characteristics it is only 8% for me). How do you make sure everyone knows what they should be doing and what is right? Not just for radiation but for chemo, surgery etc. Isn't there something we can do?

I was placated by my rad onc in that he said, well - if you get another cancer, then you can still keep your breast and have a lumpectomy and radiation - yeah, right (like I would keep them after having cancer 3 times).

All I am saying is that I feel very educated but you aren't in the beginning. Any ideas on outreach to help women going through each step. Maybe a checklist and questions on every aspect you can think of. Our group has contacts at many of the drug companies and perhaps after coming up with a good list, they can take it from there and publish it (even as their own) so it gets out there. I don't mind taking the project on, but I want all of your imput. Let me know what you think and what we can do.

[Mary Anne in TX]

I think it's a fabulous idea! What a help it would have been for all of us. ma

[Patb]

Great idea. I only wish I had known what I know now ( which isn't all that much) then. I may have tweaked a few things and felt better about my treatment, such as why I did not have taxol? But we move on and learn.
patb

[RhondaH]

being that (as Joe said) HER2 Support Group is also an advocacy group, that is a WONDERFUL idea. I would be happy to help in any way I can. Maybe start out by having people lists of questions that they wished they would have or did ask and then work from there.

Rhonda

[AlaskaAngel]

Becky,

Even those with solid educations in medical matters struggle with this when they personally are diagnosed. And who hasn't discovered along the way that their very conscientious and caring health care providers don't know as much as we thought they would, or even as much as we end up knowing?

Those who at diagnosis have immediate access to major cancer treatment centers often might be able to see DVDs and visit a library for patients with lots of books and DVDs and pamphlets and computers with people to help patients look up information.

But out here... At the very best, there may be occasional pamphlets at the hospital or doctor's offices, and a couple of old editions of things like Dr. Susan Love's books.

So I was pretty happy when the Mayo Clinic came out with the Mayo Clinic Guide to Women's Cancers. It lets the reader explore any aspect of a lot of what we struggle to figure out when we are diagnosed, or even down the road. It isn't a perfect answer. The newest info isn't in it, even though it is not very old. But I would recommend it even just to get familiar with the vocabulary and concepts. I bought a copy and it is kept at my PCP's office in the room they use for chemo patients, so that it is available to them.

I'm not sure how we can find a way to keep something that has to be really current going, that would especially help those who already have learned the basics and are trying to handle questions like the one about your situation. What you are talking about is something almost like Wikipedia, constantly being updated. Am I on the right track with what you are thinking here?

AlaskaAngel

[Lani]

as I see it part of the problem is that there is not one right answer and the so-called right answer varies with time, as more information is gained and (hopefully) medical practice changes as better understanding, knowledge and technology are obtained/developed.

For example, MRIs of the breast and TopoII testing of her2+ breast cancer.

The first is not available to many and the latter is virtually unavailable to most anyone (unless someone at UCLA like Dr. Slamon or a friend of a friend of a friend sends the tumor to Dr. Press's lab at USC)

There are many variables such as age and concurrent illness. I tried to help
provide information to allow choices for an 84 year old who had a pacemaker, making breast MRIs and Brain MRIs unobtainable and for whom chemo seemed inappropriate (other health problems as well).

A resource that can be revised and updated periodically and tries to be all-inclusive in terms of considering patients access to care (third world countries or those with very stingy national health services), age and other diseases something like the Wikipedia. I understand that Google is launching a competitor to Wikipedia.

The funding for getting the word out, maintaining and ensuring those diagnosed have access to the information immediately could certain come from drug companies.

I think her2 support aspires to be exactly what you are describing, but it is amazing that most oncologists and researchers I talked to at San Antonio had never heard of it, let alone a volunteer at a local Advocacy group(who went to SABCS) who is her2+ herself.

I think your idea is wonderful, but
Perhaps the effort should be two-fold. To get the word out on this website and find the best way to get information about choices, her2 specific information if it is available, to the newly diagnosed.

As an example of that, I have read two different papers/posters with two entirely different conclusions as to whether her2 +bc recurs more locally than other breast cancers. This might impact someone's decision as to whether to have radiation or not (for example the 84 year old).

I am thrilled that someone with as much drive, commonsense, and intelligence as you wishes to embark on this much needed project.

My only caveat is not to make it a book in this day and age. By the time it gets published, its information may be outdated. Or make it a book with
advise to search its associated websites for updates???

My two cents...

[CPA]

Lani wrote...

"as I see it part of the problem is that there is not one right answer and the so-called right answer varies with time, as more information is gained and (hopefully) medical practice changes as better understanding, knowledge and technology are obtained/developed."

Right on!

When first diagnosed, many people do not realize that there are many different types of cancer with many treatment options. To compound things, these options frequently change!!! Lani, you are 100% correct. It can be a little overwhlming when your doctor starts discussing options and actually asks for YOUR input.

Gaining knowledge and an understanding of risks/rewards of various treatment options is an important and empowering part of the fight.

It is also hard to find good "plain english" explanations of pathology reports. This would also be a great way to help people when first diagnosed.

Becky, great idea. Run with it, and if you need anything, just post.

[Carolyns]

Becky,

Happy belated birthday and what a great idea.

I have learned that in areas that are unfamiliar knowing the right questions to ask is key. Sometimes we cause our doctors to investigate further. Doctors are way to busy and I think that sometimes they just pick an option because no one knows. In these cases we may favor one option over the other with added knowledge.

My handbook for cancer was an old book called Choices. It was a book of questions to ask. I know for a fact that it is ME who has pushed to keep this cancer at bay by pushing my doctors. When my doctors get tired I move on to another doctor with more hope and promise. I once had a doctor look at me after I was diagnosed for the second time, he looked at me and said, "It is never good to get cancer twice", he looked down and left the room. That was not helpful.

I can't imagine all of the bad stories that doctors witness. I try to focus on what can be done. People here help me do that and they are beating the odds every day. They point out options that I would never know existed without this site.

Happy Holidays! Carolyn

[madubois63]

I think it's a great idea, but...

After hearing those words for the first time, I did not want to read anything. Then when I did feel up to reading, I found it all so overwhelming. I was given tons of information and had access to too much information. I think that anything you decide on doing should be in non-medical terms - easy to digest. A check list of sorts is a great thing, but there are so many good lists that I think need to be put together. Different sections would be really helpful. Starting out, asking questions, tips on surviving side effects, moving on, financial help, insurance info...I've gotten things from American Cancer Society, CancerCare, Cancer 101, Livestrong, several different cancer hospitals...I have cut things out from all of them and pasted them in to a notebook (phone numbers, web sites, what they offer...). I have also learned things along the way that most people hopefully don't have to deal with (loosing health insurance during treatments, having a car repossessed, leukemia because of chemotherapy...). I think we all have something to contribute to this book/pamphlet/idea, but know it will be a lot of work to make it better than what is already out there. Maybe you can start a thread and everyone can contribute information about some of the things they've learned along the way. I've dealt with social security disability, free meds and other fun stuff, loosing jobs, returning to college and having a federal/state program pay for school. I've got tons of info and doubt very much that I am the only one.

Speaking of things I learned...I have to go to my local hospital to pick up Christmas presents right now. I was adopted this year. It was a difficult thing to do (admitting I needed help), but I am so thankful. Cancer can be devastating in more ways than just the physical. maybe if people know these things are out there, they won't be so afraid to look and ask for the help they need...

[Bill]

Educating yourself is never a bad thing, but it's difficult to keep yourself from worrying and imagining the worst case scenario every time you read something that seems troubling. That's why, in my opinion, it's so important to have a relationship with your doctors that you feel that they are considering your questions carefully and not "rushing" you. Also, as confusing as it may seem at times, ask alot of questions of your chemo. nurses, fellow patients, any resource you have, but be aware, sometimes these answers you get may be contradictory, and I guess the answer for this is that all physiologies are slightly different, and what may work for one might not necessarily work for another, but it's important to ask the questions. Keep a journal, or a notebook with questions to ask and take it everywhere with you, and whenever possible, take the same person with you on every doctor's visit ( I know that's tough sometimes). Please know that you are all in my thoughts and prayers. Love, Bill

[sassy]

I realize that HER2's are a minority DX, however I have been surprised that this site is not listed when articles are written or other media outlets list websites to go for help and information on breast cancer. ACS is usually mentioned(I have not found it that helpful), Susan Komen, BreastCancer.org, and CancerCare are also often mentioned.

What can we do to help get the word out to HER2+'s about this site which is the best source of information available to the lay person (and often professionals, my former onc found info here). One problem is that even in this world of technology, there are those who have no access to the internet, or whose access is limited because of illness (public libraries, etc cannot be visited). Internet would appear to be the best avenue, especially considering the fast paced evolution of treatments, but how can we "spread the word" and how else can we share information and reach those who would benefit from the information?

I realize that your vision probably goes way beyond this Becky, but this aspect has troubled me for some time.

I'll help any way that I can.

[Becky]

I think as part of my New Year project I will do the following:

I am going to put together as comprehensive a list of questions women can ask their doctors throught every step in the process. These steps would include surgery, chemotherapy (to include a list of questions if neoadjuvant chemo is recommended), radiation, Herceptin, and anti hormonals. I think it could also be helpful to have lifestyle questions a woman can ask of her doctor (to include supplements during and after the process). As I finish each list, I will post it for input (any imput along the way would as be helpful).

Secondly - Sassy's suggestion on getting the site address out there is great. Some ideas include getting our pamphelet and leaving it in our own onc's waiting rooms or with the chemo nurses. However, I am a Reach to Recovery volunteer for the ACS (and do the I Can Cope program with them too) so I have some contacts there - however, linking to cancer.org goes beyond the scope of the local people I know. However, I will start there and work my way up via contacts. I do know that GSK wants to link their new Her2 sisters type site to ours. We can start small and work our way up.

So, I will let you know what I need as I will post the lists as a sticky so the threads don't get lost as I work on them. I am not going to start until after the holidays as Christmas is near then the 27th is my father-in-law's birthday and the 30th is one of my daughter's bday then New Years but I will begin after that - maybe even New Year's Day.

Stay tuned.

Merry Christmas

[Karen W]

I know that had I not found this site and talked to Christine, I probably would not have fought so hard to get Herceptin. Both my surgeon and onc told me, "we don't test for Her2 status because even if you are positive, you're early stage and we won't treat with herceptin".

Armed with the information from this site and the 2nd and 3rd opinions I got; I went back to my onc (ready to leave him if I had to) and demanded Herceptin.

Getting this site out to newly diagnosed women is a very good idea.

I, too would love to be a bc advocate.

Karen

[Mary Anne in TX]

You know, Becky, what you're working towards is so needed. It's far more than a source for information. How many times have I "read" the information but gained comfort from hearing it from several survivor warriors. The information may be available in other places, but it's like reading a comparison of cars. It just means so much more when someone has owned the car you are researching. I have read the same information in other places, but I never put them into action until I checked it out with the warriors! It's about trust and I trust the warriors! It's so much more than knowledge! Thank you for your willingness to do this! I'll hand out stuff at STOH (CTRC) in San Antonio when the time comes. I'll ask Dr. K to smooth the road for me though I don't think it will be necessary! They are so patient centered there! STOH is getting ready to be a separate enity (is that spelled rt) in a new building. They have us (STOH) on their web site. ma

[Jean]

Hi There dear one,
Well you know how I feel ....maybe placing those questions in a special seciton on the site...and giving it a heading for new members a list of
of questions to ask....etc.

Also adding a section just on understanding the pathology report.
Regarding the importance of er/pr...status, KI 67 levels, Fish etc.

Also Becky, it would help if it was divided between early stagers
and later stages....as we know first hand from S.A. how divided
that issues was....Also Becky, we do realize that brand new dx. woman believe their dr. know or are aware of cutting edge information.

I am glad this project will be born...anything I can do to help you just let me know.

Miss you,
Jean

[StillHere]

Becky
Thank you for taking this on. You are one in a million! Peace to you. Karen