It's been awhile

Hi all of you amazing people! i have been very busy trying to live life. Single mom, 2kids, 2 jobs in the cancer field, etc. I have been doing so well with the cancer until now. If some of you may recall i had humongous and multiple liver mets and small lung spots. I did taxotere and xeloda added herceptin and responded fabulously. Being er+/pr+ i swtiched to femara (chemo seemed to have made me menopausal). After about a year I started to cycle again proving that I was not menopausal. I began zoladex every 28 days and continued on the femara until last summer when there seemed to be a smidge of progression so we switched to aromasin. As time has passed it seems i am still not menopausal and we upped the zoladex to every 3 weeks. i have been hesitant to get the oophers out as i am quite attached to my femininity (earth mama, homebirth, chilbirth education, blah, blah, blah). So I have been dinkin' around with this hormone thing and now it seems I went too far. I woke up monday at 5:00 am with this stitch like pain in my side and it wouldn't go away, so I had an impromptu scan yesterday. My last one was 3 months ago and I was VLED, my markers have been normal for quite awhile with a slight elevation the last time about a month ago. So the verbal report from the rad to the onc was " there is a lesion right on the surface of the liver and there seems to be progression". i go in at 3:30 to day to discuss treatment options and all they told me on the phone is that they think i would really benefit from chemo. That scares me as I'm now afraid it is really progressing to bigger proportions. Is that possible in 3 months time? I would really like to get the ovaries removed-like today- and figure out the hormonals and go on, with herceptin of course.

i also have been noticing a wierd feeling in my hip, but bery off and on. I have chalked it up to actonel and aromasin side effects, but now I am thinking I need a bone scan and that has me freaked out too.

And I know that you all know this feeling, when there is a setback. I feel like I am losing this battle and how many times can i beat this? I have been blessed with such a phenomenal quality of life and I have gotten quite used to it. i felt like i was getting my life back together, although just like when i was rediagnosed, I am working myself crazy and hating that I don't spend the time with my kids like i used to. my girls are 8 and 6 and I HAVE to see them grow up, get married, get divorced, and live happily ever after like everybody else (kidding). I want to be an old grandmother, no different from any of you of course.

I need to be reminded that this is doable and that people do live a long time. i am very active in researching the newer breakthroughs, trials etc. i know that there are many exciting things going on. i just need real people to tell me how great life can be and how mangeable this is.

I recommend this site to so many of my clients as after all of my research and work in the breast cancer field, I feel this one is the most supportive and most knowledgable of all of the sites out there. Thank you to all of you for what you do for all of us in the club!

whew...thanks, joy

Hi Joy. Being HER2 I like this site too as I learn something just about every time I plug in here.

By now you may know more about your situation and options, so let us know how you are doing?

AlaskaAngel

Dear Joy,

I am also battling with the same feelings you are doing now. My children are 14 and 8 (boys) and I would really like to think that we are not losing this battle.
I also believe this is a very good informed place and I wish you the best and that we do not lose the hope.

Leticia

[Lolly]

Dear Joy, don't be so hard on yourself for living and enjoying your life, that's what we all strive to do while keeping cancer at bay. Just get your scans, put a plan in action, and then move forward, you can do it! Your girls are learning a great lesson from your example, how to face adversity and not let it consume you but instead take it's proper place as just another facet of your evolving story. If you feel you should spend more time with them for awhile, do it now and have no regrets. You can and will ride this out and we're here for you, so keep us posted :)

Love, Lolly

Joy, did you read Esther's post from Feb. 24...talking about met patients living 10 - 20 years ? When you're feeling frightened, just remember how well you've done in the past. You will continue living this great life and you will enjoy every minute of it with your children. Please let us know what you decide re treatment.
Happy Healing,
Celina

[Isabelle]

Dear Joy,

You will get through this setback and get back to some variety of a balanced life. You can still have a good life controlling your breast cancer. I have been doing it for 6 years with 3 kids now ages 7. 10 and 14. We are traveling to London and Spain this summer.

Make sure your doctors know that you are going for quality of life, long term. I have had oncs. who just think hitting you with sledge hammers today is all they can do. Preserve your energy and your treatment options. There are many things coming down that may work for you in a month, a year or two.

I had to get my ovaries out laproscopically. One day surger. Zoladex did not work for me at any dose. so aromasin could not work. I was very glad I did the surgery after riding a roller coaster of hormanal ups and downs for 6 months while my cancer slowly progressed. I may go back on hormonals again if for some reason I need a break from herceptin.

Everyone is unique. Your cancer, your life, your journey. This board is good for comparing stories. But, you need to do what works best for you.
Love,
Isabelle

THANK YOU ISABELLE. That was perfect!

[StephN]

Hi Joy -
You asked if mets can show up in as few as 3 months. The answer is "yes!" This was what happened in my case. In Oct. all was well and markers were well into normal range. By 1st of Jan. I had a side ache and liver mets were rampant. So, with Her2 and high grade, anything is possible. (Why we get checked so often!)

I was already just into menopause, so do not have answers about the hormonal questions. Lucky to have missed those problems! But, I think there are lots of women here who have had their ovaries removed and this "uncomplicated" their treatment plan. Menopause did not take away my femininity, and so many women are afraid that they will change a lot. Not necessarily. That is what I can tell you.

Keep us informed as we are here keeping positive thoughts for you.

thanks Steph. I'm sorry that has happened to you, too. I look at your beautiful picture and gain a lot of strength. I know I could search this info, but are you er+/pr+?
Love, Joy

[StephN]

Dear Joy -
Well, when this photo was taken, my brain mets were already growing, but I had no symptoms, so my smile hides a secret (even from me!).

I am hormone neg - both ER and PR. All my friends taking the faslodex and other hormonal therapies are all menopausal already, so did not face the same question as you.

Some of the good web sites like Dr. Susan Love have links in this site if you go to the Resources area at the top. You should gt some good info on hormonals in these sites.
Good luck!