Reaching out. Not sure how this works... - SHARE Metastatic ...

SHARE Metastatic Breast Cancer

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Reaching out. Not sure how this works or how much to write.

MammaRay profile image
8 Replies

Hello. I'm a 33 year old mother of one amazing 6yr old boy. I was originally diagnosed with stage II BC in June 2012. The same day they discovered I was pregnant. Crazy. The pregnancy didn't last. Went through radiation, bilateral mastectomy, reconstruction, hormone therapy, etc...

Discovered mets in 2016. Shoulder, pelvis, lung, brain. Went through Gamma Knife in May of this year. Due to the location of the Mets, and the swelling and fluid buildup that happened, I couldn't speak clearly for several months afterwards. It was extremely frustrating, but fixed itself. The tumor appears to have shrunk about %50 and now they want to zap it again. *Sigh* Not sure if I want to.

I feel like I am just beginning that stage 4 journey and I'm already exhausted and just done. I typically follow a BC forum, and in the past two weeks I have learned of five deaths among the stage 4 members there. It's just all so disheartening.

I know I am so blessed. Wonderful son, husband, faith, family that all support me. Sometimes it's just hard.

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MammaRay profile image
MammaRay
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8 Replies
daf10 profile image
daf10

Please hang in there I believe that you have come to the right place Many women here share the same fears and doubts I think that together, through sharing your stories, you can find the strength to carry on. You can also take advantage of SHARE's tele-conference support group for women who are stage 4 There are many women in the groups who can relate to your story.

Having MBC is like being on a rollercoaster with it's ups and downs, and I agree that it's depressing when there are deaths. I too was diagnosed with stage II, but in 2003. Then developed MBC in 2007. Spread to lungs and brain. Besides radiation, what other drugs are you taking?

MammaRay profile image
MammaRay in reply to

Right now the only BC related meds I am taking are Femera (AI), and Zometa (bone strength). Joan, may I ask what treatments for have done for the brain mets?

in reply to MammaRay

I had a craniotomy followed by 5 dosages of targeted radiation to the tumor bed (intensity modulated radiation therapy, or IMRT). I was disappointed not to get Gamma Knife, but my oncologist said that the tumor was kind of deep and controlling it would be better done with both surgery and radiation.

Rhwright12 profile image
Rhwright12

Hi MammaRay!

I had the bone mets also. So I'm taking Zometa for a year for that. And I had Perjetta which worked really well for me. I was diagnosed this past July with metastatic as a newbie as a cancer patient.

It's hard for all of us to look at numbers and stats and not get discouraged from time to time. But pray and leave it in Gods hands to guide your treatment and decisions. And enjoy this Christmas season with your 6 year old. Those were the fun Christmas's!

-Sending prayers

-Heather

Mariannem profile image
Mariannem

Mammaray, it is hard to hear about the deaths of others on this MBC journey with us. It hits me hard each time. I still hope that one day treatments will be found to keep us living. I have been on this journey for the past 3 years and 3 months. It is a roller coaster ride with lots of ups and downs. One of my sources of strength is my son. He is 12 years old and I want to keep living for him. Stay strong. It is okay to be sad when one of us is lost to this disease.

Partia profile image
Partia

Best wishes. I am on zometa, Ibrance and letrazole (femara). I get a zometa infusion once a month.first diagnosed Stage 2B in 2001. Was cancer free for 15 yrs. Now Mets to bone and small nodules in lungs.

janetjanssen profile image
janetjanssen

So sorry for your difficulties. It is hard sometimes. Prayers for help with your decisions and for blessings in the days ahead.

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