Life does not end with a stage IV diagnosis (really!)

scrunchthecat

Hi ladies,

I understand the blowback from The Good Housekeeping article. I guess I'm torn between wanting to change public perceptions of Stage IV cancer patients as The Walking Dead, but at the same time I get that the public could just as easily file metastatic breast cancer under Cute, Pink and Cured. I think it cuts both ways. I am a university professor, I have told my students I am undergoing treatment for breast cancer (although I have not said anything about Stage IV), and I feel that I am a spokesmodel of sorts for people with cancer, and how my students perceive them.

I am joining hundreds of other women in Washington, DC, on October 13 (Metastatic Breast Cancer Awareness Day) to demonstrate for increased funding for metastatic breast cancer research. I posted the details here. It would be great to see some of you there!

https://community.breastcancer.org/forum/8/topic/835055

exbrnxgrl

Scrunch,

I understand what you're saying. I think many of us are treatable for longer periods of time, but this disease is most definitely terminal for the vast majority of us. I have done extremely well for over 4 years, but I harbor no illusions about the eventual outcome. Will I be in the 1-2% who make it? Of course, I would love to, but I'm not counting on it.

Nel138281

Took the time to read the article. Short and does not even begin to cover the issues each of us live with. I am fortunate to have been NED for 2 years, but accept i am terminal, hopefully not in the next months or years , but no one can predict. As positive as my onc is with things in the pipeline etc. I do not anticipate being here for several more decades. I live each day, the good the bad and the ugly and appreciate each.

Nel

Texasrose53

Personally I know I have an incurable but livable disease, how long is it livable? Only God knows...the Doctors don't know, how many times have they told someone they have 4 months and they live 4 years. I don't want a pitty party from friends and neighbors. I want normalcy. Normalcy is continuing to work, enjoying my family and friends, planning things into the future. Living my life to the fullest!

When I was originally diagnosed and knew I was going to loose my hair, my husband offered to shave his hair. I told him no....I told him I don't want to see cancer every time I look at you, and that is what I would see. I have read the statistics and according to them only 20 - 22% with metastatic breast cancer will make it 5 years or longer. Well why can't it be us?? We can hope and dream!!!

Nobody knows how long they will be on this earth...as Wendy said before we could be hit by a bus. The advantage we have is we know our time is not as long as everyone else....so we can plan. We can do those things we always put off. My daughter has always wanted to do a mother/daughter trip....well we are going to do it!

I like what you said Nel...you live each day, the good, the bad and the ugly and appreciate each one!

Lauralind5

I do believe in living every day as fully as we can.  And to make the time to do those things we always wanted to etc. That being said I spent every afternoon M-T in bed and most of today because I went to work some this week. So I'm torn. I don't believe we should pink it up sugar coat it this is serious !!  When 40k a year were dying of aids there was public outcry and screaming and a huge push for research. Yet a decade or more later we are still dying at a rate of 40k a year. 

When ppl use the hit by a bus analogy to me it pisses me off. Bus deaths annually ~400. Death by MBC 40,000 +. I guarantee if 40 K people getting killed by buses every year there would be no more buses on the road until they were more safe. 

txmom

Agree. I'd rather take my chances with a bus then a slow painful death. Although I did see a funny quote the other day...If penises were lobbed off as a cure the way breasts are, there'd be a cure for breast cancer by now....

exbrnxgrl

Not a fan of the bus either. If you have stage IV bc, you can clearly see the bus, you don't know when it will hit you, but there is little chance that it won't. That's very different than your average person with no terminal diseases

Wendy3

wow I really started something with my bus comment. Sorry ladies didn't mean to upset anyone or minimize anything. It was something that was said to me at an earlier stage to put my panic in perspective. Or I may have gone mad...

ChelleG

Everyone's future is uncertain, wheat her it's a disease, a car accident, a heart attack. Every human being should make the most of every day. I continue to feel blessed having as many happy years as I have (46 yrs.) Not every day has been the greatest, but I'm thankful for all of them. This dx is very new for me. It has been a most difficult month. But I find myself truly cherishing every beautiful Colorado sunset, every "I love you" and every minute of ordinary life so much more because of the diagnosis. I think that in a very strange way, we are blessed knowing that our future is uncertain. So many take their daily life for granted, we don't.I pray for many many years of cherished days for us all

KiwiCatMom

I use the bus thing too but with some reasons behind it. About 20 people were hit by buses in 6 months in Wellington. One of them was the head of the bus company! I work in Wellington. So getting hit by a bus is a real possibility. I am not making light of my condition (or anyone else's ) but it does help me with perspective. And for me it is a meraphore for not knowing what tomorrow may bring and a reminder to myself to treasure every day. And it's a coping mechanism. No offense intended to anyone - we all have our tools for coping.

That said, I so agree that if there were that many people dying from being hit by buses, they would not be allowed on the road. It's way past time to find a cure for all of us.

Hugs to all

Terre

Lauralind5

Wendy it's way different coming from a BC (or any other illness) than someone not dealing with a terminal disease. We all have to find our own way to deal with what we are dealing with. No worries !!!

Wendy3

😊😊😊😊😘

i wish you all a glorious restful weekend. I see my oncologist on Monday so the real world will encroach soon enough. Right now I have my family and my animals close and that's pretty nice.

Lauralind5

Wendy beautiful spot !! Soak up that sunshine. I hope you have a good visit Monday!

ChelleG

Wendy, beautiful peaceful spot! Enjoy your weekend! I'll be praying for a great mo visit on Monday! Warm hugs to everyone!

50sgirl

Hi everyone, I hope you have enjoyed the summer since it is quickly coming to an end - well, not for KiwiCatMom! Now that my initial tests and scans are over, and I am used to the reality of the dx and tx plan, I am settling into my retirement. My DH and I went to Ogunquit, Maine last week an walked the marginal way, a mile and a half long paved walkway overlooking the ocean. At the end of the marginal way we strolled through town, stopped for lunch, and walked back on the marginal way. We ended up walking 4 miles. It was a beautiful day and lots of fun. My goal is to walk 3 or 4 miles a day, if I can. I believe that exercise is good for me. I don't know how long I will continue to feel as good as I do now, so I am doing what I can. My hope for all of us is that we live long, pain free lives.

Several of my grandchildren play soccer, and my DH and I have had the pleasure of watching many games during the past few weeks. My grandchildren are all different ages, and the games range from entertaining to comical to exciting. I feel blessed to be able to see them. I can count on a big hug when the game is over, even from the 14 year old, and hugs always feel wonderful. The cool weather is coming, and I will have to start piling on additional layers of clothing for the games.

Thank you all for contributing to this and other threads. I read this every day although I don't contribute as often as I should. Hopefully, I will become wise with experience and will be able to give wonderful advice and support in the future. Enjoy your week.

Lynne

Lauralind5

We ditched the home improvement projects today and went to the beach for the day ! We haven't been able to go all summer because of me. I did ok. Lost balance s couple of times but was able to take a short walk in the shoreline down the beach.  I tried very hard to enjoy what I could do but I'm bummed that sitting there was all I could do.  Still very happy I was able to go at all. I guess fall can come now that I made it to the beach !!

scrunchthecat

Ladies - There is a social media campaign today for metastatic breast cancer awareness. If you use Facebook or Twitter you can use the hashtag #BeyondTheBreast. (I also like #PinkIsNotACure and use them together).

Rosieo

Texas rose and Lauralind and all you wonderful ladies. I have been thinking and thinking. (Of course I am still not 100 % ready to do chemo) I still have a few days before I start) Buy my question is. If we ladies with metastic cancer have no problems why do we have to take chemo. They tell us it is to give us quality of life but first they want to poison us. I am diagnosed with mets to my lung. One is 3.5cm and I have multple smaller ones and the MRI showed possible problems with some of the T bones but also said it was not diagnosed as bone mets and I should have another scan in 60 days which my onco didn't send me for. The bottom line is I have no problems. I feel healthy. I do have some pain in my upper back (right where your bra lays) (I only need to take one naproxim sodium at night) This pain the doctor said is probably not from the lung but from my ribs. Anyone else just did the chemo without feeling the need to do it. Thanks for all your help. As you can see I don't know how I am going to make it to that chemo chair. Rosieo

exbrnxgrl

Rosieo,

I have no experience with chemo, so can't really address your question. I do know that there are quite a few of us, with limited bone mets, who have never had chemo and just take an AI, but lung mets present a different picture. I know someone with more experience will be along soon

Lauralind5

Well Rosieo, I felt fine with my mets diagnosis too. It wasn't big enough to have caused me any issues. I'm not sure I could ever feel safe knowing I had active lesions and chose not to do chemo. Its really bad that the cure makes us feel worse than certain points of the disease but unfortunately that's how it is.

exbrnxgrl

lauralind,

It is not uncommon for those who are er+ with limited bones not to do chemo and use only AI's. This can be very effective treatment. I am in my 5th year of NED and have never done chemo. Whether this a possible tx for mets to other areas, is something I don't know. I have lived a virtually normal life since dx and would not hesitate to do chemo if needed, but this is a perfectly acceptable option for some patients.

Texasrose53

Hey exbrnxgrl.....wish it was an option for us TN's...but it isn't . Chemo is about the only thing available for us at this time. Not complaining since chemo did get me to NED a few weeks ago.

I believe Rosieo is also TN....I think I remember her stating that in one of her posts.

Julie

pearlady

Treatment with AIs for those of us who are ER+ is standard for many of us who are stage 1V, including lung mets.  I was NED with Femara and Herceptin for almost 5 years. But for those who are Triple Negative, chemo is the only option.  But the good news here is that chemo seems to work especially well on triple negative.  And there are many options for chemo for stage 1V.  Rosieo please do not skip the chemo.  There is a good possibility you can then dance with NED.  Not doing anything will not improve your life in the long term. 

exbrnxgrl

Ah, thanks. Without a dx line, it's hard to know

suems

I was all booked in to have chemo after surgery, until the post-op scans found bone mets, and chemo was cancelled at the last minute in favour of Tamoxifen. I felt like I had been written off when the Onc. told me chemo wouldn't save me. I would gladly have gone through chemo rather than be told I was terminal.

However, I just heard this morning that my x-rays show nothing. I will get a CT and bone scan to confirm, but it looks like the Tamoxifen is doing its job.

ChelleG

Suems, I have my fingers and toes crossed! I'm newly dx. And on tamoxafin. You give me so much hope!!!!!

gaia0132

You give me hope too Suems. I was dx stage iv in August and started tamox a little over 3 weeks ago. I am also Herz 2 so started herceptin 2 weeks ago.

Rosieo, when i read your earlier post I was wondering your hormonal and H2 status. I figured since the chemo route is before you it's because you are TN. I know it's a hard decision. And we all make our choices based on what it is we are looking for in QOL.

I wish you the peace of mind in navigating this rough terrain

50sgirl

Suems,It sounds like your treatment is working well. I hope you continue to have great test results.

My DH and I were driving home from my grandson's soccer game this evening, and we saw the most magnificent sunset I have ever seen. I took a quick picture with my phone, and want to share it with all of you. The photo doesn't do it justice, but here it is anyway.

Have a good night.

Lynne

suems

Don't get too excited yet - the reason for the x-rays was that I have been getting pain in my left thigh - the one with 2 small bone mets. I also had chest x-rays because of a lingering dry cough. I'm not sure whether the Onc meant nothing at all showed up, or if he meant nothing new - ie the 2 mets are still there. I will have to wait for the scans to see what he meant when he rang me.

However, I am now left with going back to my doctor to find out what IS causing the cough and the sore leg - if it isn't cancer, what else is going on? Or is it all in my imagination?

Lauralind5

Exbrn I think Texas pointed out she's triple negative as she posted on the TNBC thread as well.  I think that's how we knew. Just to reinforce us Tnbc have no options outside of chemo/rads surgery. Hopefully that will change soon !!