Metastatic Breast Cancer

[CoolBreeze]

If you could tell people about metastatic cancer, what would you say?

Full disclosure, this might be for an October 13 blog post. I will not use people's names so your privacy will be protected and only ideas will be used, not wording.

This can be anything from what it's like to live with to what people say to us. for example, if one more person says to me "I'm not metastatic YET" I might go nuts. :)

Speak! :) :)

[KDR]

Personally, I smirk a bit inside when I hear patients yapping in the clinic waiting room with such winners as: "Luckily, I'm not Stage 4 or anything like that." Right. I guess they have a crystal ball I don't have.

[Lauriesh]

That we are never " done with it" and it is never over, until we die.
I get asked all the time how many more treatments I have, even by one of the chemo nurses!



Laurie

[Raquel]

I feel like once your done with the chemo treatments everyone just assumes that it's over and done and you can move on. I wish that was true, as others have said this is something we will deal with for the rest of our lives . I wish people could understand that, but I was naive once too and thought this would only last 6 months and here I am 6 years later still dealing with it. It's hard to stay so positive year after year!

[Jackie07]

I would say that there are a bunch of my online support group members who are survivors of Metastatic Breast Cancer. Christine, the support group founder who had passed away not too long ago, was a 14 year survivor who had led an active/productive life as a social worker and a breast cancer survivor advocate!

[Raquel]

I totally agree we stage 4 survivors lead very active and fulfilling lives! I do things now I never would have dreamed of before one of them being flyfishing! I ran my first 5k last year and enjoy everyday more than before ! We are the proof that cancer doesn't limit us! That's probably why people think I'm all finished with it:)

[CoolBreeze]

Yeah, well, I'm stage IV and I don't have an active life, I'm afraid. I can make it to the chair to the counter were I keep my pain meds but it's rare I can do anything.

So, items on the agenda are:
1. some women have active lives but are really sick. Maybe you can't always tell by looking.
2. Treatment never ends
3. People who think they are free of cancer may not be.

Anything else?

[StephN]

This a great idea for a post, Cool One.

I would mention that since my diagnosis in the Dark Ages of 2000 the panoply of new treatment possibilities is mind boggling with more being approved all the time. Especially for our particular HER2 positive subtypes.

We have moved from the "Scorched Earth is the only way to try to get all the cancer cells" to "Let's consider Quality of Life and try for the targeted cell approach in the beginning or even prior to surgery." These two statements are a night vs. day difference in outlook for eveyone involved. And apply to us at stageIV as well.

BC is still a terrifying diagnosis, but some knowledge and support is more helpful than ever with all the new possiblities building on recent advances in treatment.

P.S. Getting active may be done in baby steps. But I am past that and now need to shop for new shoes for our upcoming trip to the northeast to see some Fall Colors (as if we don't have any here in the Misty Woods ...).

[KDR]

Actually, No. 3: assume nothing about the person sitting next to you; staging is a false sense of security...as we know and have witnessed here and in our personal lives, some early stagers leave us before the late stagers and vice versa...and then some make it out altogether...it's a mixed bag...a huge human pinata...

Karen

[sarah]

I think October 17th has been made a day for metatastic cancer, am I wrong? I thought this was an excellent idea since people aren't aware of the importance of understanding all metatastic cancers and fighting for a cure. Like many on this site, I'm sick of awareness, if people are that dumb......we need a cure or to make it more of a chronic instead of a deadly disease. I'd also like to see more explained and worked on for those with inflammatory bc. I hear nothing about that. I lost a close, dear friend to that one and of course as a founder of a local support group, I've lost more than I like to think about to various cancers. I do hope that October 17th is a metatastic cancer day, we need to get the word out.
love sarah

[Saygoon]

I hate the " looks". People will ask about my cancer and when I say Stage IV - I get that OMG when are you going to die look. I have bone mets in my spine. Some days are better than others. Sometimes I may feel pretty good physically but mentally I'm a wreck. The worst reaction I got was from a BC Survivor who went on and on about how I made her feel better because she was not as bad off as me WT?!!!! Never assume anything is soooo true.

[SoCalGal]

Hi Cool,
So sorry you continue to struggle and suffer. Good thread - I will shamefully admit that I think of any cancer less than stage four as "not the real kind".

I would add to your list:
We're all going to die, people!

[yanyan]

That's a true and funny comment Flori! I try not to take it personal when I hear peoples negative comments on stage 4 like ＂I can't believe so and so are still alive＂. While dealing with my diseases for almost 3 years non stop is so exhausting, I'm lucky to be still alive today. How much longer I don't have a crystal ball but life otherwise has been good!

[Redwolf8812]

The best thing I can say is that God has used this evil cancer for my good. It has brought me, my family, and some close friends closer to Him. We're able to deal with other crises much better. In fact, what we once thought of crises seem trivial now. My daughter suffered a concussion and a damaged retina when she recently got hit in the face with a soccer ball during a game. She had just made varsity. The old us would have hit panic mode. The new us just calmly made doctor appointments (of which there were many) and dealt with it.

Before cancer I was obsessed with income and bills. I literally went online to see my bank statement and credit card statement twice/day, budgeting our household six months ahead of time. We're not foolish spenders so this habit was the first to go when I "got sick".

I look forward to what you write, as always!

Love, Penny

[Mtngrl]

My main message is in three parts: 1) I'm not dead yet, 2) It's not anybody's fault they are Stage IV, and 3) We're all going to die, so seize the day.

People want a formula or a feel-good story of triumph. There are some amazing and inspiring stories (like StephN, for example) but everyone is different, and everyone's cancer experience is different.

I look and feel healthy. I'm doing fine right now. I don't want to go around constantly reminding people I have a fatal illness, but I also don't want them to be surprised when my time comes. So I try to balance. And the main reason I bring it up at all is not to garner sympathy for myself but to help them get a clue about their own mortality. We're all on borrowed time. My 1st and 3rd "rules" apply to everybody.

[Aussie Girl]

Dear Cool Breeze,

I'm a stage 2a girl and I would like you to tell people what kind of interactions are helpful for stage 4 girls who have so much to bear. I feel like crying when I read some of the senior member posts, but at least, I can listen to their voices and send them my good thoughts. I can hear their witness to their personal journeys and I honor that. They also give me so much - definitely worth talking about the value of a specific community for your particular type of cancer - the information is specific and up to date article links are really interesting, let alone the wonderful sharing.

I am lucky enough to have a sister-in-law accompanied her best friend, who had Stage 4 HER2 breast in her 30s, on her journey to the end, about 14 years later. That journey was full of both fun and terrible sadness. Now my sister in law always seems to be able to say the right things to me and to be able to listen and agree with me when side effects of chemo are too much. Clearly this forum performs a similar role.

Good luck with your blog and I hope you enjoy the writing of it!

Aussie Girl

Best wishes

[Mtngrl]

I think the thing every human being needs most is to be recognized, acknowledged and accepted. Notice others around you. Reach out. Ask. Listen. Share yourself.

We each have the power to bring light into dark places. Being seen and heard is one of the most basic human needs. If everyone did more of that--for every human being they encounter, it would be a better world.

"Happy" Metastatic Breast Cancer Awareness Day, everyone.