Hi - I'm new here

[suzi-mac]

I've been poking around here for a couple of weeks and decided it was time to jump in. Diagnosed in 2008 - right after my 50th birthday - with stage 3 breast cancer. Bilateral mastectomy, removal of most lymph nodes on affected side, lots of heavy chemo & radiation. All stayed quiet on Letrozole until April of this year when my tumor markers jumped & a spot was found in my spine. Now in my 2nd cycle of Ibrance & just finished my first 3 Faslodex injections. This stuff is harder when you're older!! I'm on an emotional roller coaster looping between optimism & fatalism.

[mariootsi]

Welcome to a great site with wonderful encouraging women who really understand.

It definitely is an emotional rollercoaster! Perfectly normal to feel many, many emotions day to day!

Just know you will always find support here!

Love,

Marianne

[laurac1014]

I luv your crazy kitty picture, it fits !

[Julie2233]

I completely agree with Sandra's comments. The roller coaster is absolutely horrible to start with, but I know that for me it got better.

I found my new normal and like Sandra realised that I still have a life to live and it's not one controlled by cancer. But it takes time to get there.

Give yourself time to grieve for what you thought your life was going to be, but know that the rollar coaster gets easier.

Welcome to the site!

[Teddielottie]

Hello ! Hope your 2nd cycle is going ok ... the first few cycles are the hardest as we readjust but it does get easier after that ...ask whatever you feel on here , as the ladies are amazing , in both advice and support ! You mentioned in your intro that your onc believes your bone mets have been caught early and may be able to stop progression ... many of us on here have become stable after only a short time , so it is possible . Just keep busy and stay positive ! x

[Barbteeth]

Welcome...what a place to meet though!!All the best

Barb xx

[nstonerocks]

Lonely is a great word for the effects of this disease. You feel so isolated by the stigma and the fact that even loved ones with best intentions can’t know what living with mbc is like. It forces you to rethink how you fit into life and how to live without constant fear and anxiety.

[cpenberthy in reply to nstonerocks]

That's exactly how I'm feeling

[nstonerocks in reply to cpenberthy]

The worst is when you are newly diagnosed. It took me 2 years to really calm down, and it comes and goes depending on scans, life stressors, sometimes something someone says or news or story about cancer. How long have you been diagnosed and what have you tried to help these feelings?

[cpenberthy in reply to nstonerocks]

Only diagnosed in May so very fresh

[nstonerocks in reply to cpenberthy]

Sorry you joined our ranks, but glad you found this board as the women are very open and supportive of one another. We really know how you feel. If you look through the posts you will see we were all bewildered, to say the least, at getting this news. The important thing is not to get so panicked and depressed that you can’t find happiness in your life. Many. Including myself, have sought out psychological help and medications. I meditate and follow inspirational people like Kriss Carr (she has incurable cancer also). Check out her website. Let us know how we can help.

[cpenberthy in reply to nstonerocks]

Thank you so much, I have found this site so helpful to not feel so alone or just to know that others understand and also have those days when you're just miserable or grumpy.

[Hidden in reply to cpenberthy]

I agree. You will find lots of helpful advice and support on this site. It is where we can come to check in with other ladies who are in the same situation as us. We get what it is like dealing with this disease, not just for a year or so, but on a day-to-day, permanent basis.

Sophie x

[Red71]

I can’t say any more than Sandra did...I’m about a year in with a wonderful oncologist also. I’m 70 and was very active, but have resigned myself to doing less but as much as I can if that makes sense! Ibrance makes me very tired but I still spend time with young grandchildren. Don’t feel fatalistic...we all do in the beginning but then we learn to fight! There are things to live for. Elaine

[PJBinMI]

Welcome! A group none of us expected to join, that's for sure! I was diagnosed with bone mets from the get go (called De Novo) in March, 2004, the month of my 58th birthday. I'm 73 now and much more relaxed about the whole "I will probably die from this bc" business. It took time. The first year or so I got a knot in the pit of my stomach every time I drove into the Cancer Center parking lot, and the nurses would get a high blood pressure reading! My onc thought I didn't like her because I didn't like needing an onc! She retired at the end of last year, and that was the scariest thing I've had in awhile! I like my new onc but she isn't as experienced as my first one, who was exceptional. I was diagnosed way before Ibrance came along, and had gotten almost five years on Letrozole. When I started Faslodex, in was one shot, not two, and it got me stablized. When the FDA approved the larger two injection dose, scans and blood work were even better! I got over 9 years from it. I do remember that early in my time on Faslodex, I would need to take a nap the day I got the shot(s) and sometimes the next day too. When I was diagnosed, I had "extensive bone mets." Mets found in several vertebrae in lumbar area, pelvis, a shoulder blade and a rib. Even though there were so many spots in so many different bones, I have never had symptoms from them. No pain. I am tired and can't do as much as I used to. How much is cancer, how much is cancer treatment and how much is age? I just dunno. But I am still me, still love my husband, our grown daughters, granddaughters, my brother, and our dog and cats. I do the grocery shopping, most of the laundry, the bill paying and household "accounting" and manage to cook dinner at least 4 or 5 times a week. I haven't done much gardening lately and our house is messier than it used to be. But I don't think about cancer all the time. I enjoy friends and good food and good wine and good music. It really does get better over time. You have some factors that bode well for you--the length of time between first diagnosis and development of mets does suggest a fairly non-aggressive cancer, being older at diagnosis often means that as well, and both bone mets only and an estrogen receptor positive cancer do, too. We generally do not die with bone mets only. The one suggestion that I have for you is to have a second opinion evaluation with a bc specialist onc if your onc isn't one. The best places to do that are the Comprehensive Cancer Centers. That is a designation given by the National Cancer Institute, which is part of the National Instutes of Health, in Washington DC. The NCI website has a list of CCCs, but it can take a bit of looking to find the list. There are around 50 of them scattered around the country--more on the coasts than in the middle of the country but there are some there. Most of them are attached to medical schools, and they have oncs who both do bc research and see bc patients, both to treat and for second opinions. I went shortly after initial diagnosis, suggested by my onc, and recently, suggested by my new onc. Both of those appts have been very encouraging and worthwhile, even though they basically said "you are on the right track with treatment" and "you have alot of time left." I hope you will do as well as I have--more and more of us are living longer and longer.

[PJBinMI]

Addendum to the above (hard to believe I didn't say everything already! lol) I just discoved that the HealthUnlocked homepage for this group has a link to the list of Comprehensive Cancer Centers. On the right side of the page there is a heading that says Resources. Click on that and scroll down to the Comprehensive Cancer Center heading and click again and, ta-dah, there you are! Much easier to do that than search around on the NCI website!

[Tam-56]

Welcome to the club no one wants to join! I felt better immediately after I found this site. There is a wealth of information and support from a group of amazing women! I come here when I am struggling with an issue and find loving support always. I was Diagnosed WTF in January 2018 at age 68. That is when the world as I knew it came crashing down. I was paralyzed with fear. Being fiercely independent, I went through two hospitals before I found one where I felt comfortable. I found a wonderful, kind, patient oncologist who quieted my fears and gave me hope. I hope you find loving support and encouragement here, welcome! ❤️

[Hidden in reply to Tam-56]

Did you just use WTF instead of MBC on purpose? I almost spit out what I was eating — thanks for a good laugh.

[Tam-56 in reply to Hidden]

Lol I couldn’t find any other words to describe what it felt like! ❤️

[MyMiracle13 in reply to Tam-56]

🤣I like WTF!

[Hidden]

Hello Suzi!

Welcome to this site. Feel free to ask questions, chat, vent or just share how your day is going. We talk about a lot of different topics on this site, not just "the disease".

Take care,

Sophie

[Hidden]

You took the thoughts right out of my mind, Sandra! I have to say I have never been a fan of rollercoasters either. I'm not the right person to take to a theme park or a fair, because I scream on the teacup rides!

Being able to connect with you and others on this site helps normalise this disease more and makes me feel much less alone than I did when this all kicked off. Like you, I don't know anyone else who is living with metastatic cancer. All the people I know right now who have had cancer were early stage. They are now in remission.

Sophie

[MyMiracle13]

Hello Suzi and welcome to this lovely group. I’ve been diagnosed for just over a year so I still experience lots of fear and anxiety whenever blood tests and scans are due. But everyone here is so warm and very responsive to all questions and concerns so you are in good company.

Maria

[Missie31]

Hello Suzuki-mac. I was diagnosed with stage four breast cancer in 2018. At first I had radiation- misdiagnosis! Then letrozole and Ibrance for metastasis. I too fluctuate between optimism not cure but care and fatalism- why is this taking so long? I am lucky to have friends and family for support and two young grandsons to enjoy!

[Contrarielle]

Hi, what is your PhD in? Well done you, I hear you!