New Mbc

[birdibelle]

I am scared and sad. I just found out I have MBC. a lump in opposite breast. Biopsy was positive .Any advice? Birdibelle

[SusieIM]

Feeling scared and sad, is VERY normal. We all react differently to this diagnosis, everyone here can relate. My reaction with my diagnosis was denial, as odd as that sounds (they must of made a mistake), after that I felt scared and sad. I suggest doing research. There really is hope. Sending a virtual hug and a prayer to you. This is a very good support group.

[birdibelle in reply to SusieIM]

Much appreciated. My feelings have been like a roller coaster.

[obeautifulgirl in reply to birdibelle]

Yes, a roller coaster! I was diagnosed with mbc early in April. My emotions and thoughts changed from moment to moment. I only calmed down once the treatment plan was in place, about 3 weeks later. Even my friends and family members who were upset about the diagnosis seemed to relax a little once the plan was announced and then begun on May 2.

It is a lot easier—for me anyway—to have a calendar that shows when I need to take this pill or get that shot.

I can’t remember how I got onto this online support group, but it has been of enormous benefit to me. I really was feeling there for a while that I was the only woman who had ever had this diagnosis!

Best wishes, Berdibelle.

[Barb5 in reply to birdibelle]

All normal reactions. If you read up on it like this site you will see there are so many different meds to try and some people are living 20 years with Mbc the tough part is getting the right meds to deal with side effects. I suggest medical marijuana they have so many things to help and without getting high.

[Mermaiden]

Yes of course, with each new diagnosis of cancer, it is normal to feel shocked and scared. I’m sorry for your new diagnosis. As this has occurred in your other breast, is it possible that it’s a new primary in that breast rather than metastatic disease? Try to remain as calm as possible (I know this is a tall order) until all the facts are in and you know what lies ahead treatment wise. Breast cancer, even metastatic breast cancer is very treatable today, and new therapies are always on the horizon. We have every reason to remain hopeful!

[birdibelle in reply to Mermaiden]

Thank you. Helps so much with words of encouragement.

[birdibelle in reply to Mermaiden]

I had her2 positive, er neg or neg infl breast ca last year. Last week er positive 40% weak, and pr neg and her2 positive in one lymph node axillary opposite breast. I'm confused on changes receptor.

[Mermaiden in reply to birdibelle]

Yes it is confusing. As I understand it, these receptors can change. My metastasis 22 years after my primary bc has different receptor numbers as well. Before, I was clearly Her2 neg. Now I'm Her 2 equivocal, but I'm still being treated with Ibrance and letrozole until otherwise indicated. And certainly if this is a new primary in your other breast, the receptors would not necessarily be the same. Am sure your doctor will address this with you with far more authority and science than me! I just want to wish you well, and hope this new tumor is not metastatic disease. Sending positive vibes your way! Hang in there!

[birdibelle in reply to Mermaiden]

Appreciate the explanation.I feel like a mountain is in my path to climb. Feeling overwhelmed. I am 60 years old and i miss my own mom and dad too.

[mariootsi]

Glad you are here! We are all scared but here to support each other! We are here for you!

[birdibelle in reply to mariootsi]

Reassuring, ya are like life

preservers.

[Survivornow]

Take your time to be sad but then get busy fighting! You can live many, many years with treatments both standard and self-treating naturally. And new medications and a possible cure are happening daily! Find a good Oncologist who plans on helping you survive and thrive! Prayers for healing for you!

[birdibelle in reply to Survivornow]

I needed the hope. Much appreciated!

[diamags]

Has your cancer gone outside your breasts? You might just have stage 1, 2, or 3 breast cancer. Which is curable. Listen to your doc is my best advice!

[birdibelle in reply to diamags]

The biopsy said micro metastasis er+ 40% weak, pr-, and her2+. One axillary lymph node on opposite breast. I go for bone scan on wed. I was er- with inflammatory b.c. last year 2018. Had 6 chemo(Cisplatinum,Taxol, and Perjeta, Herceptin). Had left mastectomy. 20 weeks radiation. Then on 5 of 6 IV Kadcyla. Found lump last week. I am overwhelmed. Also CT scheduled.

[Godbeforme]

i'm so very sorry you're going through this! It is definitely scary. One day at a time works best for me, that's all any of us get anyway, we do not have an expiration date stamped on our foreheads and only God knows when our time will be. With that said, I have read that even ER- HER2- responds to aromatase inhibitors and ibrance or verzenio as well; don't remember exactly where I read that, but it was a study type article, of that I am sure. Survivornow is right, so many new treatments, immunotherapy, ibrance, AI's, so much hope I just want to stay alive and healthy as possible until the CURE becomes known. The lady in Florida who was completely cured was treated with imunnotherapy! The Israeli oncologists announced in December of 2018, I think it was, that they have a cure for ALL cancers that will be revealed in a year! It's called mu-ta-to and I have great hope that something will become available that is less toxic and shorter treatment time, and they say it will cure it ALL, so we have to be hopeful for the future, that we WILL have a future and a hope! Read Jeremiah 27:11. I know God has the final say in how long we walk this earth, partly by faith and partly because I've watched my husband go through 3 heart attacks, 2 strokes, colon cancer, abdominal aneurysm and diabetic and he still has pretty good quality of life. We set everything up for him to go first, financial wise that is, and now it looks like it might be me! So, the old saying, if you want to hear God laugh, just tell Him your plans, definitely applies to us. On another note, I recently started taking ginger capsules and have noticed I'm not having hot flashes anymore, aches and pains are less as well as I was taking quite a bit of aspirin. The letrolzole had thrown me back into menopausal hot flashes and I sure didn't miss THAT! Maybe it will help you too, if need be! May God bless you and heal you in Jesus name, amen! I hope you live to be 120 like the bible says, above all, I hope you know Jesus Christ as He is the Healer and He will lead you and guide you into the treatments you should have. That is what I am doing, I am trying to follow the direction of the Holy Spirit for what is right for ME. He leads with His great peace. If I don't have peace with something, I wait on the Lord to guide me. He has healed me before so I know I'm in good hands and He is walking this road with me. For God so loved the world that He gave His only Son, that whosoever believes in Him should not perish, but have eternal life. For God did not send His Son into the world to condemn the world, but that the world through Him might be saved. John 3:16-17 <3 xo

[birdibelle in reply to Godbeforme]

God bless you for your kind words and prayers.

[Godbeforme in reply to birdibelle]

You're welcome and I'm so glad to hear from you because it is Jeremiah 29:11 and I had put 27! I realized this and didn't know how to find my previous posts. Also, I emailed the Israel scientist and told him I would love to be the first in line for the trial of mu-ta-to, heard nothing back yet but I definitely put my name in the hat <grin>. God bless you and stay strong in Jesus name, amen! When I am weak, HE IS STRONG! <3

[123048]

Bless you sweetheart, be strong. Love and hugs Xxxx

[Rbeth in reply to 123048]

The only revenge is to live well and enjoy every moment. Eat clean, drink green tea, tangerines are good and read and share your feelings. We are all hear to listen and offer encouragement. Blessings every day. Reenie

[birdibelle in reply to 123048]

Words can't Express ya'll special thoughtfulness . 💕

[LadyPastor]

It will take you a few days for your diagnosis to finish hitting home. But just keep in mind that your diagnosis does not mean you are going to die today. You still have some life to live and you should make the most out of it. I have been diagnosed with WBC which has gone to my bones as well. But I found that I had no fear or sadness about it. Don't get me wrong, it is very normal to feel those things but I know I have the Lord with me and either way it goes is ok with me. I am looking at this time as an opportunity to make sure I say things to my friends and family that I want them to know and I have time to write each one a letter for when I am gone. It has helped to listen to my three favorite songs, "The breakup song" by Francesca Battistelli

youtu.be/H0wpP5o7xpI(Not working as expected?)

and Maybe Its Ok if I'm Not Ok by We Are Messengers

youtu.be/hl5GcRrJLyw(Not working as expected?)

and God Only Knows by for King & Country

youtu.be/Q5cPQg3oq-o(Not working as expected?)

These three songs have helped me a lot. Even if I don't really feel like my diagnosis is no big deal, these three songs help me bring it to the surface and deal with it for a few minutes. I think we need to do that from time to time.

[obeautifulgirl in reply to LadyPastor]

Wow! Thanks for putting up these powerful songs!

[Kimr2081 in reply to LadyPastor]

I love these songs especially God only Knows. I sat and cried while watching it. Thank you for sharing these with us.

Kim

[PJBinMI]

I'm so sorry that you have to deal with this crazy cancer. Scared and sad sure sounds like what most of us go thru! The best advice I have for you is to seek out a bc specialist onc at one of the Comprehensive Cancer Centers, the top tier of cancer treatment centers in the US. They are listed by state on the website of the National Cancer Institute. (You may have to hunt around a bit on their website to find that list) Those cancer centers have very specialized oncologists who see patients and do research and are among the top oncs in the country. My own local onc referred me to one after initial staging, when bone mets were found, and I was able to get an appt within about three weeks. I was around your age when first diagnosed, the month of my 58th birthday, with bone mets from the get go and I celebrated my 73rd birthday a couple of months ago. Each of us has our very own set of cancer cells and a unique response to treatment. There are more treatments available now that when I was diagnosed and women are living longer. If you were to see me out and about, you would not suspect that I have an advanced cancer! I have fatigue but I have never had pain from the cancer. I hope you will do as well. But I also remember vividly that the first year or so was definitely the hardest for me emotionally! It's a crazy road with travel with this!

[birdibelle in reply to PJBinMI]

What great news your 73rd birthday. That made me smile. Hope. I am getting bone scan today . Yikes

[Kimr2081]

I think we were and are still at times sad and scared. It's f'ing scary!!! Some days its like its life as normal and some days I can't get it out of my head!! I try and live in the present and take one day at a time as cliche as that might sound. My best to you and sending you love and hugs.

Kim

[SeattleMom]

Dearest Birdibelle!

So sad for your feelings which have been shared by ALL OF US upon being told this same awful diagnosis.

I believe it is much like those stages of grief: denial, anger, bargaining, depression and acceptance. The disbelief when you are first told that your cancer has metastasized is DENIAL. This can't possibly be happening to me!

The ANGER is that feeling, sometimes never voiced, that screams inside you in the early months, "Why did this have to happen and why did it have to change my life so dramatically?" Anger at your body; anger at your bad luck; anger at healthy women.

BARGAINING arrives when the anger subsides and you start to wonder what you could have done to prevent this spread (in my case treating my BC with surgery 20 years ago and never having tamoxifen recommended as follow-up by my cancer surgeon). Could this have been prevented?

That fourth stage, DEPRESSION, is when you realize that there is nothing you can do now to get yourself out of your situation; for me, it still comes and goes; and I think I am in and out of the edges of ACCEPTANCE, that stage where you keep hope inside without being unrealistic and finally just enjoy every day and try not to wallow in despair.

I hope that this helps you to know that YOU ARE NOT ALONE and that you have a "safe place" to share your questions, your despair, your good news, your bad news, and your HOPE! God bless you!! Linda XXOO