The 3rd Time's the Charm

adavis

Hi. I was diagnosed Stage IV two days before Christmas 2016. I have mets in my lung and pleura and small lesions on my femur, pelvis and in a number of vertebrae.

I was originally dx in 1999 at 31. I should have been dx when i went to my doctor in 1998 with a large palpable lump, but she infamously said "Your are too young for breast cancer."In 1999 my ca had grown to a 5.5cm mass and 3/36 LN were positive, with one being 1.5cm. So...Stage IIIA

I had a mastectomy and C/A followed by Taxol. I was on tamoxifen. I was "experimentally" treated with a pamidronate infusion 1 x month. I had 36 RAD treatments.

I had a TRAM flap reconstruction.

In 2002 I was dx with a regional recurrence in my under arm where the largest lymph node had been removed. More surgery. I had a total hysterectomy/ooperectomy. I was put on Arimidex and continued on a bisphosphonate infusion 1 x month.

Sadly, after about 8 or 9 years of bisphosphonate I developed jaw necrosis so no more of that stuff!

I stayed on arimidex for 10 years.

A routine chest x-ray showed the mets in my lung late in December. After CT, MRI, PET, etc. the bone mets were discovered.

I am currently finishing up month 2 of Ibrance/Letrozole.

I am due for a repeat CT on Friday to check to see how the meds are affecting the cancer.

I spent a good portion of the last 17 years being a breast cancer advocate. I volunteered and was staff at YSC (Young Survival Coalition). None of that prepared me for this.

Right now I am living in a foggy state. I don't feel truly here. I guess I kind of always new this was going to happen. I knew I was extremely lucky that I got away with a stage iii dx for so long. I have known a lot more women who dies over the years from a much less advanced initial dx.

Honestly, I'm exhausted from fighting cancer. And the lack of statistics, info and support have completely boggled me.

I am grateful that there are these message boards. I used to provide the local support groups. They all died when I left my job and now there is nothing for me. Sigh.

Thanks for reading.

Bestbird

I am so sorry to hear of your diagnosis, which must have come as quite a shock after all this time. And it's great that you have found this forum. Although it may sound like scant comfort, it truly can be a good prognostic indicator that so much time has elapsed after your initial diagnosis.

The first weeks and even months after an mbc diagnosis can be quite challenging, but over time you will begin to see that many people can do well for years with a good quality of life.

Please feel free to ask questions, and I hope that things will go very smoothly for you!

zarovka

we understand being tired. I am 14 months and one treatment into this and quite tired of it all. Ibrance will be a walk in the park after what you've been through. There are a lot of women on ibrance on ther ibrance thread. Join us.

K

wallan

So sorry to hear about your diagnosis. I can only imagine your shock and how you must be feeling.

Hugs to you.

wallan

cive

You are still younger than I was when I was originally diagnosed in 2004, although we seem to have similar mets.  I had pretty much forgotten cancer, after all I was more than 10 years out when I was diagnosed with cancer juice in the pleura of my lungs in 2015.  A CT scan also found the bone mets that are pretty much everywhere although they are for the most part all sclerotic and my lung juice problem has been solved.  But I am 67 and I'm somewhat laissez faire about the whole thing.  I am sure if I was your age I'd be pretty bummed out.  Guess the only thing I can say is I'm hoping you'll find a reserve of courage after you've adjusted for a bit.  In any case I'm hoping you'll find what gives you strength and peace and agree it just ain't fair.

adavis

I appreciate all of your responses. It means a lot to me to be connected with people who understand. I am having a hard time fitting in with regular people right now. Despite their good natured efforts they don't understand that I just can't truly be diverted from reality right now.

You are right, my treatment now is a walk in the park compared to where I have been before!

And honestly, I feel guilty for complaining. Because at least I have lived this long without mets. Many young women never get the chance.

I am very lucky that I have a loving husband and two wonderful kids who are now 24 and 25. I know plenty of women who don't have that either.

But no matter what, it is hard. Now I see what this dx is doing to them (again). For my kids it is hard...they are still in school, not in relationships, still trying to find themselves in the world. And now they are foreseeing the possibility without me even in it. My husband and I just moved into our dream house lest than nine months ago...and now he is picturing all of it without me.

I am having a hard time. I honestly have nothing to say that can help them feel better. All I can say is I'm not giving up.

I am so tired of having cancer in my life. And right now I don't feel the fight in me. I know it will come back because that's just who I am, but boy I am deeply in limbo.

Tomorrow I have my repeat chest CT to see if the cancer in my lung has been effected by the Ibrance/Femara. Everybody is pretty wigged out but holding steady. I am hoping that by the end of the day I have a piece of good news to share.

Thanks again for your support!

Sue2009

Adavis, Hope u r doing better now. I know your pain. I lost my go to breast cancer buddy last Dec. I have been so sad, We had similar Dx & timelines. In my heart I think she just gave up the fight. I try to stay positive & keep fighting for my kids & hubby. My goal in 2009 was to live to see my middle schooler graduate HS. He graduated last June & is flourishing in college. My other son in college, 21y/o, has been fighting depression. I know it is partly due to my disease & that is breaking my heart. My oldest is not in a relationship, but working on her PhD. As a stage 4 mom I pray my kids have significant others to be there for them when things really start to go down hill. Lastly, I would like to see grandkids, but even though my oldest kids are age appropriate, no one is ready to start families of their own. Loving my granddogs.

singlemom1

Hi Adavis,  I just read your original post and wanted to check in to see how you are doing? You have been through quite a lot and I know the first 6 months after my stage iv diagnosis was very hard.  I hope the Ibrance and Femera are giving you positive results.  This is my current treatment and find it very doable. 

artistatheart

All I can add adavis, is take one day at a time. Grab on to any enjoyable distraction you can. right now it seems very dark and lonely. But the good days will come and make you realize you still have a good fight to wage. You too Sue, hang in there, find the joy in every little thing. That is what will uplift you when you least expect it.