My history of diagnosis : I am 6... - SHARE Metastatic ...

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My history of diagnosis

EZSZ profile image
EZSZ
78 Replies

I am 63, husband and 3 kids, the youngest is 17. I ad cancer and full mastectomy of my left breast on December 2005. Chemo, radiation, the whole process. December of 2020 I've been diagnosed with stage 4 metastatic breast cancer. Shocking, I thought I was done with cancer.

I am now halfway through chemotherapy, and don't know what is awaiting me. Like all of you ladies, I am hoping to stick around as long as possible, and avoid physical suffering.

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EZSZ profile image
EZSZ
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78 Replies
Wintervt profile image
Wintervt

Hello,You will find everyone here to be very supportive! Learning that you have stage 4 is certainly a shock but with time it does get a bit easier. What subtype do you have? How was your recurrence discovered?

I was dx in 2018 and have 2 school aged daughters, so I’m hoping to be here for a while.

Best,

J

EZSZ profile image
EZSZ in reply to Wintervt

It is a shock, I work so hard to remain healthy :)I had pain under my left arm, then realized that my hand has swollen. I though lymphedema. I should have known that you do not develop (I think) lymphedema after 15 years.

I am triple positive.

Wintervt profile image
Wintervt in reply to EZSZ

Where do you go for treatment? Has your oncologist discussed next steps after chemo?

EZSZ profile image
EZSZ in reply to Wintervt

General hospital Ottawa. Probably continue H & P

Wintervt profile image
Wintervt in reply to EZSZ

How are you feeling? How often do you receive the treatment?

Jpl5036608 profile image
Jpl5036608 in reply to EZSZ

I worked at the Montreal General in psych ( I am an OT) in 1976-1977!! Probably you were just a teenager!!!

EZSZ profile image
EZSZ in reply to Jpl5036608

Actually, 1975 - 1777, Israeli military. What's an OT?

Shevic55 profile image
Shevic55 in reply to EZSZ

Occupational therapisd

in reply to EZSZ

My experience is similar. I had BC, mastectomy and chemo in 2004 and then noticed underarm pain in 2014. Thought it was from exercise. Nope! Taxol etc.

In June 2018 dx with MBC. Real kick in the teeth as you know. I’m on Ibrance etc.

I was floored. Devastated. Terrified. I crawled into bed. Then, weirdly, after about 6 weeks I realized I wasn’t dying the next day or next week. Somehow, that flipped a switch for me.

I got on with living. Pre covid we traveled. I bought a pedal assist electric bike and rode 1100 miles in 2020 cuz we couldn’t travel!

My point is you are entitled to mourn and be angry. The women on this board will help you navigate and you will find loving support.

We are here for each other.

EZSZ profile image
EZSZ in reply to

Thank you so much for your response, I empathize. I went through the same process of panicking, thought I'm gonna die imminently. I am not angry nor am I mourning; I am frustrated with helplessness and feel profound sadness.

Can't be angry because this is not anyone's fault, just bad luck.

I wish Covid will be over though, I want to feel free - but that's true for all people, healthy and sick.

I appreciate this group. I am looking mostly for shared information that is unique only to us. It's great that we take the time to help each other.

rubyc1234 profile image
rubyc1234 in reply to EZSZ

Well, my story in Ontario is similar. Had a lumpectomy, chemo and radiation to left breast in 2004/05. Thought it was gone and then became short of breath in 2018. Mets to the lung and ribs. I was devastated and very sick for about 8 months and then with oral chemo I came back. It has been 3 years now and I am living a good life. I do not feel I am going to die anytime soon any longer. I talk to so many of us who have this disease and some have been around a long time.

EZSZ profile image
EZSZ in reply to rubyc1234

That's exactly what I want to hear. You are probably HER2 negative, because you take oral chemo, right?Anyway, thanks for sharing, always happy to hear such positive feedback

rubyc1234 profile image
rubyc1234 in reply to EZSZ

Yes, HER2 negative but I was taken off the oral chemo after a year and a half when the cancer stabilized. I now am on Ibrance and Letrozole since Dec 2019.

EZSZ profile image
EZSZ in reply to rubyc1234

Thanks

Rodi24 profile image
Rodi24 in reply to rubyc1234

How is it going with the ibrance/letrozole combo? I've been on it one month, joint pain in shoulders. 6 weeks past single mastectomy.

jersey-jazz profile image
jersey-jazz in reply to

Dear Marthas'Vinyard. Good for you that you travelled 1100 miles on your at-home bike.. That is brilliant! It is because I worry about dying before my house and my affairs are in perfect"House and Garden" shape that I am very busy turning the house upside down, ridding my house of unnecessary belongings, making new curtains, having bedrooms painted and wearing clean underwear ever day. I hasten to add that I wore clear underwear every day before MBC. Now, I make sure it goes in the wash, not dumped on the floor.Further, now that I have calmed down, I am making travel plans, again, with my little motorhome in spring and summer and reservations for a trip to South America in the late fall.

in reply to jersey-jazz

I get that too. We finally got around to estate planning. I organized things. Along the way I worked on not being consumed by it. Lord knows that with the pandemic winter I’ve had little else to do but clean and sort!

I now figure I’ve got things as organized as possible. My family knows my preference. I identified a nearby hospice when the time comes.

I like your motor home plans when spring arrives. A friend and I are researching a mid point between MA and VA where she lives for a long rail trail bike ride. I need something to look forward during the February gloom! I was walking wooded trails but the snow makes it too sloppy.

AvidBooklover profile image
AvidBooklover

When I was diagnosed with MBC in 2019 after 7 years since original diagnosis, my first question was, "Should I start knitting for my unborn grandchildren?" My doctor looked up and said, "How old are they?" I said, "29 and 24." She said, "No!" And I went home and made a skirt for myself instead. Way I look at it, everyone has something. This is my something. And at least there is something they can do about it. Welcome...great group here!

EZSZ profile image
EZSZ in reply to AvidBooklover

Thank you for the encouragement and kind words.

Jpl5036608 profile image
Jpl5036608 in reply to EZSZ

My daughter is 41 and was diagnosed with de novo stage 4 breast cancer her2+ october 2019. Her children were 5 months and 4 years old. She had chemo and continues on herceptin every three weeks as they dropped the perjeta several months ago. She is NED!! Liver lesion gone! So we pray this NED lasts a long time! She had a single mastectomy and is having 19 rounds of radiation. So the treatment continues but she is in “remission”. It does happen

EZSZ profile image
EZSZ in reply to Jpl5036608

First, allow me to express my best wishes to your daughter. I too had kids late in life: 40, 41, 46 🙂I hope she'll live yo hVe grandkids. It's great that she has a supportive mother like you.

Jpl5036608 profile image
Jpl5036608 in reply to EZSZ

I am not sure she is always happy with us though my husband and I moved across the usa and have been living in an airbnb the last 16 months to help her and the family. And by the way, I grew up in Montreal and my oldest, best friend lives in Ottawa! She has been so supportive.

So one of your children is still a teen! There are some Canadians on the facebook site called Stage iv breast cancer truths. I just finished updating a names and locations document so people could connect all over the world. I even met someone who went to my same high school in montreal!

This site here is amazing for support and good information. And just know there are so many lines of treatment now and new drugs are being approved all the time.

EZSZ profile image
EZSZ in reply to Jpl5036608

Chapeau for your support of your daughter. I too am a mother on a mission. If you'd like, I have a new website milkingnuts.com/It ain't easy for anyone. Children want their freedom, and sometimes they resent their parents for needing them.

Jpl5036608 profile image
Jpl5036608 in reply to EZSZ

Not sure I get the milkingnuts connection

EZSZ profile image
EZSZ in reply to Jpl5036608

A mother on a mission story. Sold our business to take care of my youngest who was diagnosed with Crohn's disease. Worse day of my life. That's why I sold my house too and moved to sn apartment next to university. So I am familiar with devoting myself to my family. Now I must leave sometime to myself and rely on my husband's devotion. Not easy.

Jpl5036608 profile image
Jpl5036608 in reply to EZSZ

You are on here because you have metastatic breast cancer no? That should be your focus no? Someone can be there to help you during treatment no?

EZSZ profile image
EZSZ in reply to Jpl5036608

My husband supports me. What I'm saying is, it is so much easier to give than to receive. Sometimes the receivers are resentful :)

EZSZ profile image
EZSZ in reply to Jpl5036608

There is a "my story" video

jersey-jazz profile image
jersey-jazz in reply to AvidBooklover

Dear book lover. I love the pep rally attitude you are expressing. You are right. There are things we can do about it, and we are going about doing it.

AvidBooklover profile image
AvidBooklover in reply to jersey-jazz

Thanks! I see what other issues that my friends have. I will take my something over other somethings!

jersey-jazz profile image
jersey-jazz in reply to AvidBooklover

Well, maybe if we had a choice ----? Let's not go there.XXX OOO

jersey-jazz profile image
jersey-jazz in reply to jersey-jazz

I am sorry I answered you that way and absolutely get where you are coming from. I am really coming from the same place. We are the chosen ones and we can choose how we are going to live it. Let us live it with our best self and make a positive difference to those loved ones around us!

AvidBooklover profile image
AvidBooklover in reply to jersey-jazz

Trust me....I would skip this if I could...I joke that I am a frequent flyer at Sloan with 4 different cancers since 2010 (three dealt with --- melanoma, breast, thyroid, all one spot; one dealing with, MBC, also one spot) and would prefer never hanging out there and have more United miles. But I love my team there. There are so many other things that people are living with...and they are still trying to figure out what to do.

EZSZ profile image
EZSZ in reply to AvidBooklover

You're one positive woman, I like that, and the humor 😉

AvidBooklover profile image
AvidBooklover in reply to EZSZ

And for humor on my last surgery in Nov for my thyroid, my surgeon referred me to an endocrinologist and he said, to save you time checking, we all agree on this doctor. I said, wow, that saved me checking! He said we all know you!!! Now mind you first surgery was in 2010 and that dr still is there for me. Huge contributor to my attitude!

EZSZ profile image
EZSZ in reply to AvidBooklover

Indeed. I had one for 25 years in QC. Moved here lady year to be with my boys. My last surgery, second mastectomy, I said to the staff of the operation room: my Dr. and are like a married couple, once every 10 years he sees me naked

SeattleMom profile image
SeattleMom

Hello!I am 72, with two children, ages 31 and 28. I was diagnosed with early stage BC in 2000, followed by double mastectomy (my choice.) No follow up therapy (which may or may not have been oversight by surgeon.)

Fast forward 17 years, and I discovered hard lump in right armpit; it is MBC with spread to spine and iliac. My treatment was 10 rounds of radiation to spine, followed by 33 months on Ibrance/Letrozole combo. In August, after mild progression to iliac, my treatment was switched to once monthly injections of Faslodex.

As others have offered, the first six months are the worst, similar to the stages of grief. Once you have adjusted to the shock and have reached a level of acceptance, the whole ritual of monthly bloodwork, pet scans every 4-6 months, and the accompanying anxiety as you await results, you can and do fall back into the rhythm of life. It is doable! God bless you!

Linda 💗💗🙏🏻🙏🏻

EZSZ profile image
EZSZ in reply to SeattleMom

Thanks Linda. Interesting story. I appreciate your kindness.

Alimonro profile image
Alimonro

So sorry to hear this news, but thought I would tell you about a treatment I'm on. I'm also stage 4 secondary breast cancer. I was diagnosed almost 4 years ago. It's spread to spine vertebrae and lymph nodes in my chest. I'm on palbociclib and letrozole and it's still working it's not moved at all. So all really positive. Good luck and stay positive x

EZSZ profile image
EZSZ in reply to Alimonro

Thank you so much. Hopefully, we shall all find the right treatment for us and die of old age

jersey-jazz profile image
jersey-jazz in reply to EZSZ

Dear EZSZ. I have told most of my family and friends that my aim and goal in life now is Jodie of old age, not cancer. It makes all of us feel better about my situation.

EZSZ profile image
EZSZ in reply to jersey-jazz

Great idea, resets the mind.

8576 profile image
8576

So sorry to that you are having this experience. You have found a very good place for information and support. If you have a question and you type in a word or two in the search box at the top lots of remarks will come up on that subject. Aside from that you will be ok. There is lots of meds to take and more to come. I have been living with met. breast cancer since 2011. 10 yrs. Take care.

Cheers, June S.

EZSZ profile image
EZSZ in reply to 8576

Wow! Thanks for sharing this. Are you triple positive? Can you share more about your treatments?

8576 profile image
8576 in reply to EZSZ

I am HER 2 Positive with bone mets to my left hip which has been stable except for pelvic fractures which are also stable but trying to heal and don't cause me any problems. Now I have lung mets just started. My cancer is very indolent. I think I am one of the oldest on here. There are more ladies in your age group though. Not that age matters so much. Cancer is difficult to deal with but we are resilient.

Cheers, June S.

8576 profile image
8576

I forgot to mention I am from Ontario Canada also. There are a few of us on here!

Cheers, June S.

EZSZ profile image
EZSZ in reply to 8576

You know what? Would be nice to organize a meeting once Covid allows. Maybe even a fun long weekend somewhere like the thousands islands 🙂

8576 profile image
8576 in reply to EZSZ

Yes, that is a great idea or a zoom meeting. One woman in the group here, Julie, who is in the UK. organized some zoom meetings for those who were interested. It was a lot of work and she ended up organizing meetings for 4 or 5 of us at a time. A fun long weekend is a good idea. I also forgot to tell you, I am 80 yrs. old. and I don't travel much anymore but others might be interested.

Cheers, June S.

EZSZ profile image
EZSZ in reply to 8576

June, good for you for making it to a young 80, may we all do. We'll celebrate your 85th, and then we'll see 🙂

8576 profile image
8576 in reply to EZSZ

Thanks for that. I would love to make it to 85! You have been through a lot especially with having a sick child. Hope she is doing better. But when one of our famliy is ill we make that our priority.

Cheers, June S.

EZSZ profile image
EZSZ in reply to 8576

It's my son. Thanks

Jpl5036608 profile image
Jpl5036608 in reply to 8576

If it is Julie2233 in the UK, she died during the night on Feb 1/2021. She and I emailed more than daily for months and I will miss her more than I can even say. That Zoom is a great idea. Of course she would have arranged that!

EZSZ where were you treated in QC? I love that Kamala’s mom did breast cancer research at the Jewish General and that is where my dad was an ENT and where I was born!

EZSZ profile image
EZSZ in reply to Jpl5036608

First, so sorry for Julie. So sorry.I went to Vallyfield hospital because of my wonderful surgeon Dr. François Le Mieux. He went out of his way for me. I never complained, was always grateful and always funny. Made it busy for both of us 🙂

Jpl5036608 profile image
Jpl5036608 in reply to Jpl5036608

Where were you treated for the breast cancer, like the radiation chemo etc? My friend goes to la cite de la sante and then to the royal vic for her special liver help. Then another goes to the Jewish General and loves her oncologist there! My brother in law is a GI person at St Mary’s!

EZSZ profile image
EZSZ in reply to Jpl5036608

Mary, we're talking 15 years ago. Chemo at valleyfield, radiation at the general (Montreal).Now I'm at the general ottawa

Jpl5036608 profile image
Jpl5036608

Well hopefully the chemo will take care of the metastases. You will be on some type of chemo or targeted meds forever. Where is the mets? What type if BC is it?

EZSZ profile image
EZSZ in reply to Jpl5036608

Ttiple positive, left arm lymph nodes and malignant pleural

Jpl5036608 profile image
Jpl5036608 in reply to EZSZ

What were you started on chemo wise?

EZSZ profile image
EZSZ in reply to Jpl5036608

Chemo H & P

Jpl5036608 profile image
Jpl5036608 in reply to EZSZ

That is targeted meds for her2+. Most stage 4 get taxotere ( or taxol) and carboplatin and H&P 6 times every three weeks then continue on H&P forever every three weeks

mariootsi profile image
mariootsi

Welcome and I wish you well with your treatment.This mbc dx is definitely a shock! We are here for you.

EZSZ profile image
EZSZ in reply to mariootsi

Thank you 😊

Beryl71 profile image
Beryl71

I know the feeling. Mine came back after 26 years. But there's great treatments now. And this is a very supportive group where you can get a lot of information. Keep thinking and living normal life as far as you can. Good luck. Carolynx

EZSZ profile image
EZSZ in reply to Beryl71

I do my best 😌 thanks Carolyn

ChrisVict profile image
ChrisVict in reply to EZSZ

I am also 63 with two daughters and would love to see grandchildren had my daughters late. Diagnosed 2018 MBC 1 year after. I am going through treatments fast . On 5th line hope there are a lot more because I really want to do more!

EZSZ profile image
EZSZ in reply to ChrisVict

I am hoping for you, as we all do. Are you triple positive? I am hugging you. We are too young with many a dreams. Thankfully, there are many options. Hang on there my friend.

ChrisVict profile image
ChrisVict in reply to EZSZ

No Er+Her2- but I am starting to wonder if it’s time to check whether the cancer has morphed! Have to have a serious discussion with Onc I go to MSK in NYC. Hopefully have access to the latest and the greatest!

Jpl5036608 profile image
Jpl5036608 in reply to ChrisVict

There are a lot more. Keep

The faith!!

MaryCos profile image
MaryCos

Sending you lots of support and good vibes from Maryland (USA).

I was diagnosed de novo in July 2020. Joining this forum was one of the best things I've done for myself since I found out that I had/have bone mets... and I am not just looking at one tough year ahead with treatment for stage II or III. I found this site right before I started hormonal treatment (after a first oncologist started me on chemo). It has been an incredible source of both support and important information. Let's just say... I found hope here. I hope you will too!

xo

EZSZ profile image
EZSZ in reply to MaryCos

These are kind words Mary. Sending you love back.

MaryCos profile image
MaryCos in reply to EZSZ

I'll take all the love I can get, EZSZ!

😊

Jpl5036608 profile image
Jpl5036608

You were in the Israeli military??? Wow! OT is an occupational therapist

EZSZ profile image
EZSZ in reply to Jpl5036608

It's obligatory to all Israelis :)

Jpl5036608 profile image
Jpl5036608 in reply to EZSZ

I know that! You are israeli! Cool very cool! I knew we were same religion when you said “may her memory be for a blessing”

EZSZ profile image
EZSZ in reply to Jpl5036608

I am from Israel. Very secular, consider myself agnostic, but being Jewish means more than a religious, so yes. I am Israeli.

Jpl5036608 profile image
Jpl5036608 in reply to EZSZ

I am from canada but first generation as my mom was born in warsaw and my grandfather brought over whomever he could and the rest perished in Auschwitz. So yes I feel my religion strongly but not necessarily with visits to synagogue or kashrut. But I do love Israel! Last 16 months with my daughter having cancer stage 4, I definitely have questioned God.

EZSZ profile image
EZSZ in reply to Jpl5036608

My mother was born in Paris, her family was from Warsaw, most were sent back to Auschwitz too. My father's paternal family were from Kiev, Russia at the time, many were murdered by the Kozaks, immigrated to Israel early 1900. Many were persecuted. Don't go to synagogue, but do celebrate some traditions to remember our culture. I have three passports, and as I like to say: it says absolutely nothing about me. Just a woman of the world :)Where in Ontario are you from? Close to Ottawa?

Jpl5036608 profile image
Jpl5036608 in reply to EZSZ

I am from Montreal. Grew up in montreal. Now live in Mobile Alabama but have been in Denver to help daughter plus my son and wife live just north of Denver. I did live in toronto from 1972-1974 and worked at Toronto General Hospital. My best oldest friend lives in Ottawa.

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