Question for my stage IV/mets sisters...

Forever...
Dear Linda,

Most people don't understand the stages, especially with breast cancer. Some believe cancer is an immediate death sentence based on their experience when someone died from a type of cancer that has from the onset a terrible prognosis. Some believe that there is a cure for breast cancer. After all Komen has been racing for the cure for almost 30 years. They must have found it, right? I am not a Komen basher, Nancy Blinker took breast cancer and made it a very public word. I shall always be grateful.

I size people up on why they are asking me. It does depend on how much time one has, a luncheon or is it just a passing comment. Those who really want to know, it can be a teaching moment.

I've been in treatment more or less since I began this journey 17 1/2 years ago. I am ER positive. I recently took a break of seven great months. This was to allow my own estrogen to feed the cancer when it progress on Femara. When the tumors grew enough and returned in numbers, I slammed it with the same hormonal drug Femara that I progressed on. Though I didn't take an estrogen (Estradiol). I believe that was still treatment in the manner of "buying more time".

Over the years, I have been amazed especially with all the breast cancer propaganda in October, how little people really understand about breast cancer. Stage IV is not often discussed, though I believe that is beginning to change.

My reply is; I will be in treatment for the rest of my life unless, something else comes out, like a vaccine.

Best,

Doris

Linda, sometimes this is so hard to answer.
Sometimes I say 'hopefully, long enough for this to become a chronic disease'. If they keep pressing I will tell them stage iv. They either ask more questions or they get it. Sometimes I will answer as well as I can without making them feel bad. Other times I change the subject. It usually comes up when I don't want to think about it, then I just say that I have a few more rounds of chemo.

We have billboards up along I-15 here that say that Breast Cancer is now 99% curable and it is amazing how many people believe there is a cure! It is so misleading, it is sponsored by one of the Cancer Centers. Some bring this up and I smile and usually point out that if it was 99% curable we wouldn't be losing 40k men/women a year in the US alone each year and direct them to look up the "real" statistics on the American Cancer Society web site. So in some ways it opens up a door to educate others on why we need more monies going to research on advanced cancers!

I met a new gal at chemo last week who has a recurrence of Melanoma, stage 3 now. She was ned for less than a year. This was her first chemo this time around and she was very nervous. She was asking questions and I answered as well as I could, our infusion nurse was there and she is really good and knowledgeable. Then I had no problem talking about it.

Sometimes I just don't want to talk about it period. I haven't been getting out too much other than chemo and the store, and when I do get out to do something fun, I don't want to even think about it much less talk about it. It has taken too much of my life already, but then I start to feel bad because maybe they need to know.

Thanks for asking, because I don't always know either.
Carol

mom62 said:

Chronic Disease
Hi,

I tell them it's like a chronic disease and I will be in treatment the rest of my life. Hope this helps.

I agree..
I agree with what Mom62 said......I just say, as my oncologist told me, it's treated like any other chronic illness...I'll live with this as long as I live....but I also add...I'm still above ground and that's a good thing! That usually ends the conversation....I don't care to go into all the gory details with them...and I find that people who aren't close to me, aren't really interested......so I don't waste my time trying to educate them..it's like trying to tell someone what it's like giving birth...until you do it you'll never understand! ...it's not worth my time or energy...people who really care, I'll answer their questions as honestly as I can....I'm a pretty, private person.....and I have learned to cut toxic people out of our lives...has made a huge difference...

Hope this helps, Linda...
As always, I wish you the very best....
Big hugs, Nancy

camul said:

Linda, sometimes this is so hard to answer.
Sometimes I say 'hopefully, long enough for this to become a chronic disease'. If they keep pressing I will tell them stage iv. They either ask more questions or they get it. Sometimes I will answer as well as I can without making them feel bad. Other times I change the subject. It usually comes up when I don't want to think about it, then I just say that I have a few more rounds of chemo.

We have billboards up along I-15 here that say that Breast Cancer is now 99% curable and it is amazing how many people believe there is a cure! It is so misleading, it is sponsored by one of the Cancer Centers. Some bring this up and I smile and usually point out that if it was 99% curable we wouldn't be losing 40k men/women a year in the US alone each year and direct them to look up the "real" statistics on the American Cancer Society web site. So in some ways it opens up a door to educate others on why we need more monies going to research on advanced cancers!

I met a new gal at chemo last week who has a recurrence of Melanoma, stage 3 now. She was ned for less than a year. This was her first chemo this time around and she was very nervous. She was asking questions and I answered as well as I could, our infusion nurse was there and she is really good and knowledgeable. Then I had no problem talking about it.

Sometimes I just don't want to talk about it period. I haven't been getting out too much other than chemo and the store, and when I do get out to do something fun, I don't want to even think about it much less talk about it. It has taken too much of my life already, but then I start to feel bad because maybe they need to know.

Thanks for asking, because I don't always know either.
Carol

Deceiving the Public
Carol,

This group that is promoting "Breast Cancer is 99%" curable should be sued for deceiving the public.

This is deception of public information. Why don't other cancer centers, hospitals, doctors, and etc. don't take them on with a law suit?

Don't feel guilty about not informing people when you are tired and not up to it. I have done the same,
hmm works wonders.

If they need to know, there is the internet with lots of information, public libraries, book stores, more than likely every doctor's office has brochures on breast cancer. Sometimes I am to fatigue dealing with it all too.

Best,

Doris

Gabe N Abby Mom said:

I can easily see you being
I can easily see you being honest, maybe even direct...but brutal? Nope, I just don't see
that...

I am going to have to come up with my own version of "when my butt gives out". I would say "when my port gives out"...but that just doesn't have the same effect.

Hugs,

Linda

You will find your version
You will find your version of when my butt gives out, Linda. :-) Humor does always help me out.

I do agree with the other posts. The public is very confused--heck, sometimes I'm confused. Lol, maybe more than sometimes ;-).

BTW (speaking of confusion), while at Disney World, Danny came up with a new phrase that I really like, "free floating memory."

He had heard me talk about "free floating anxiety" (medical phrase for anxiety with no particular cause--it just is there floating around all the time). Anyway, we both kept forgetting things driving Katherine crazy and he told her to be nice because, one day, she'll have "free floating memory" too. That cracked me up. Next time someone accuses us of chemo brain, we can just say, "No, I have free floating memory."

Back to the topic, I try honesty, but, like everyone else, there are good days and bad and sometimes I talk more and sometimes less.

MyTurnNow said:

Linda, excellent question.
Linda, excellent question. I remember all to well being told in August 2011 that my cancer was now considered Stage IV as it has progressed to my liver. It took me a while to get my head around the fact that there was no cure any longer for me. I just couldn't fathom that I would be on chemo forever. I know, at first, that I asked my oncologist at every visit "how long will I have to be on chemo". They very gently told me I would be in treatment forever. When I have this question directed to me by someone who truly cares and really doesn't understand the "Stage IV" diagnosis, I tell them, like some of my other sisters responded, that I will be in treatment forever and it will be treated like a chronic condition. Some people appear to be as flabergasted as I was. I have had 9 Abraxane treatments, every three weeks, since August. I discussed on my last couple of visits taking a "chemo vacation". I know that chemo is keeping the cancer in check but there are also many "good" cells that are being damaged at the same time. My oncologist indicated that between 10-14 treatments, some patients take this chemo vacation. My daughter is getting married in July and I am planning on getting through 14 treatments with the last one being May 17th. Then, I will have 2 months of feeling good to look forward to. Who knows, I may even have some sprigs of hair come back. Plus, I truly want to see if my diet change has any effect on the cancer growing. I have estrogen positive cancer and quit eating any dairy or meat at least 4 months ago. My doctors at Mayo Clinic are certain that it is the chemo and NOT the change in diet.

Doris, if you don't mind, will you tell me about your "chemo vacation"?

Take care all you sweet sisters. You are all awesome and it is my pleasure to know you!!

Debbie

Drug Break
Dear Debbie,

A few years ago, my oncologist stressed that being stage IV, the treatments were not meant to be a torture program. Breaks were permitted. Take one and enjoy the time off. We all know they will end but, while your on one, enjoy it to the hilt.

The type of break I was on wasn’t chemo related. I am highly ER positive with an indolent kind of cancer. I have used Tamoxifen, Arimidex, Faslodex and Femara. When my tumors progressed last spring, I decided to take a hormonal drug “time out”. Only Aromasin was left and that one was to close to Femara for it to work.

In 2008, the SABC Symposium a study was presented by Dr. Matthew Ellis showing that women whose cancer became resistant to the hormonal therapy can once again go back on the drugs by first feeding the cancer estrogen first. This was funded by NCI and six major cancer centers in the US. It was an old concept brought back. My oncologist spoke enthusiastically back in 2009 about this concept.

My oncologist did have a patient who didn’t do well on Estradiol (estrogen). I was asked that I just use my own estrogen. I had notice that women who did use this idea, some did well, some didn’t. I just knew for me it would work. My 3 month ct scan showed minimal progression. Many of the women on Estradiol had no progression. I asked for four more months off.

By October, I knew the cancer was back big time with all the symptoms. I have had 3 recurrences, the worst was in ‘08 with lungs & lining metastasis. The side effects of bone & joint pain with Femara made me not so anxious on starting the drug up. I wanted my full 4 months. I have many other medical issues and a lot of them are bone problems. In preparation, I had cortisone shots to my ankle and knees.

My December ct scan showed it was back in good form. I saw my oncologist and began to take Femara. As the side effects of Femara returned, 3 weeks to the day, I also notice, I no longer was loose my voice and, the cough went away. I expect that the March scan will give me a good report.

About 1/3 of the women will have a good response for about six months doing this drug break. I am hoping for more but, will be happy with six.

The name of the game is “buying time”. Be it with chemotherapy or hormonal therapy.

Wishing you the best in this journey, Debbie,

Doris