Young and Stage IV

hi everyone

I was diagnosed at 43 and have 5 children I am now 48 and am the same medicine(tamoxifen)that I started on. I was terrified when I was diagnosed just wanted to make it a year or two now I've gotten greedy and want to see my kids grow up and spend many more years with my husband. My son equates my cancer to the scary music you hear in horror movies-you know something is coming for you but you don't know when something is going to jump out around a corner. It stinks to live a state of perpetual anxiety but I have learned to channel it and exercise has been my sanity savor. My advice to anyone who has been diagnosed stage 4 is make sure you are educated about your disease,be your own advocate and I know it's hard but enjoy the small normal moments u get with your family.

I just turned 45 in January and got my diagnosis of stage 4 in February. When I first found out all I could think about is leaving my 16 year old daughter and my four grandchildren (just found out one more on the way). Before my diagnosis I was a work horse who left before the everyone woke up and didn't get home until everyone was ready for bed. In my current position I make what I did working all of those hours but I am only expected to work 30 hours per week and can take time off when needed. This has given me so much more time with my family; especially my daughter. I do find myself worried about plans for the future. It seems silly but my daughter has been wanting to go to Dolly Wood but this year we had the beach scheduled and was going to go next year ( I have contemplated doing both this year as I don't know how I will be next year and I don't want her to miss out).

Tiny turtle- it is great how you were able to channel your love into something that is helping others! I applaud you. And thank you for the advise of the ice pack; I will have to try it:)

Party of five- It's great that you have been 5 years on the same medicine! I hope for the same.

Hi Everyone!

My name is Brenda. I was diagnosed de novo one year ago (mets to bones) on my 40th birthday. What a way to become Over the Hill, right?

I am single, no kids, no pets. Not even a plant right now! (Although all I want is to have 100 puppies lying on top of me! I am an absolute animal person and I am so sad that where I currently live, there are no pets allowed - except I could get a fish!)

Things that are working for me:

1) exercise: I do 30 minute workouts - try for everyday but I definitely skip some days. I can't tell if the pain is from the AI's or if it is from my sore muscles, LOL! I use the following free workout sites, and love them very much, and switch back and forth between the two: www.fitnessblender.com (for cardio and strength training) and then www.doyogawithme.com (for free yoga videos). You can choose the length of the workouts...so even if I do one 10 minute yoga stretching, I feel better! I can say that the exercise has increased my mental outlook to be more positive, is helping me with body image, anxiety and depression (totally taking that away), and it gives me focus each day.

2) meditation: I am not doing this every day, but definitely try to meditate at least 3 days a week. It takes away my mental anguish and helps me "be here now."

3) having as MUCH fun as possible! This cancer craziness definitely made me get my life together as quickly as I possibly could. I have narrowed my work down to a 3 day week (I own my own business and so am self-employed).

My gripes: hot flashes, joint pain, fatigue and insomnia are tough.

Dating: this is like a weird area for me. I am back on OKCupid, again. I honestly do not have a strong desire for a partner, but the fantasy is there a bit...so I keep going out on dates. Biggest question for me is: at what point do I disclose my health status to someone? I have not figured this out yet.

I am sorry we are all here - but I am trying so hard to see the silver linings and be grateful for all the things to be grateful for: like flowers, and nieces and nephews, and dear friends, and belly laughs, and good nights sleep (Wooyeaaah!)

During this one year cancerversary time, I am doing much reflection on how I feel today versus how I felt a year ago.

- I feel in many ways physically and mentally better because the meds are working and cancer isn't ruling my body

- I feel MUCH less anxious and am starting to recognize that this diagnosis is not a death sentence and that I have many years ahead of me

- I feel as "normal" as I ever have, which isn't saying much because I have always felt a little bit weird lol

That's my personal update. I really appreciate this group and glad you started the thread TinyTurtle!

yay! Weirdos unite lol 😂 🤗!!

Thank you for the welcome!

And I’m sorry you lost all but one of your pups. Please give the surviving fella a good pet from me 🌈

I thought I Might join your board. Wasn't sure how "young" I needed to be but looms like 44 works. I was 39 when i found IT!

So....just need some opinions. I was in treatment for 3 yrs.... Feb of 2017 was last rads. I'm TNBC so no maintenance drugs. So a full yr with NED. Can't believe I got here considering first mets were in my liver.

Anyways....I'm on LTD and SSD. Financially we're in great shape. I'm fortunate that I also get to work a few hrs a week. My employer recently asked me about returning to work full time.... my kids are out of the house. My Husband isn't really for it but would support my decision. Both disabilities give a grace period to try it and still be able to return without re-applying. So all that is good. My worries of course...my flexibility to visit my DD who is out if state, I still battle fatigue, I help some with my 89 yr old grandma who really don't want me to do it, what if and when will IT return putting my employer in a bind (they've been so GREAT thru all of this)....and my ONC...last time we talked about it...he really opposed.

So....you guys PLEASE chime in...i need it!

it’s whatever makes you happy as Mae says, for me work is a distraction but I don’t work full time. I have found that working 5 short days is better for me than full days part time. I couldn’t go back to full time and I am now office based rather than hands on, I’m a nurse by trade, manual handling is out of the question....ironically due to SE’s of treatment rather than the cancer!

Can you try it and drop down to less hours if it doesn’t work out? Well done on your 12 months NED, great news

Elen

It's great to have options to consider whether to work, whether one wants to work. whether one needs to work, etc...but it's a hard choice. I'm starting to think on this too. I'm 44, working full time, single mom to an 8 year old. I could stop working but my lifestyle would really have to change so I've decided to still work for now and do my expensive traveling. There's a big financial carrot if I can work 6 more years...the thought exhausts me but I love the idea of a nice trust fund for my son.

Reading your post, I was trying to discern whether YOU really want to work because it gives you something for your soul or if you are considering it since your employer has been so kind to you. I think this is the time for us to do what we really want, and trying to block what we feel we should do for others. That is so hard for me, but I put out there as one way to think of it. I realize this may not at all be your case and wish you every good thing as you contemplate this

Idajakoc - Are you on a Facebook? I have a friend in a local “Pittsburgh girls with Cancer” Facebook group who is Stage 4 and in her 20s. i can connect you with her via Facebook if you would like!

tiny turtle. Sorry for your crazy year but glad things are going well now. Sounds like you have moved into a more positive place

Hi, Liz. When you say arm pain led to your stage IV dx, what do you mean? Mine was found through a swollen clavicle lymph node, but my first pain was in my shoulder/chest/armpit.

It’s unfortunate, but I completely understand the guilt / resentment that you feel. I’m guessing it’s normal, but it feels awful. Don’t judge, but I’ve actually caught myself reminding them of my illness in times of conflict.

I hope to one day be NEAD. As it stands, it’s been 15 months and no such luck. I’m already on my third line of treatment. Just like me, my cancer is stubborn.

Take care andI look forward to getting to know you.

Liz,

We are the same age!

I feel just as you have written. Progression is also my future as I have also been lucky, extensive bone mets but stable. They seem to have been sleeping for a long time. My youngest son is 12 and I have two older children. The thought of leaving them devastated me, post stage 4 diagnosis and the first few months were terrible. I have no idea how we all came through in one piece.

I have so far had two years of stability on Tamoxifen following a course of chemo on stage 4 diagnosis. I try not to look too far ahead and we are just returning from a Baltic cruise that was fabulous and I’m working full time, something that I enjoy.

Do you take Denosumab Liz? I have struggled since the chemo with joint pain and fatigue and I think that it’s the Denosumab more than the tamoxifen.

I’m not complaining and whatever the future holds then we have to face it. I’m being treated at the Christie in Manchester...I see you’re from Doncaster. My oncologist there is fantastic and often talks about survival for decades. My next scan is in November.

Elen

Hi Ellen

Your cruise photo is lovely. I see you had a long interval between primary and secondary dx. Don’t know about you but I was feeling confident that I had beaten bc when all the drama happened in 2017. Your description of the shock and fallout is so true. I remember just crying for days on end but thankfully I am in a much better place now.

My brother and his wife live in Barry. They have a beautiful baby girl, Eira. They came up to Doncaster yesterday and we had a wonderful family day. I love travelling to Wales: the beach, the Brecon Beacons and Cardiff all in easy reach.

The Christie in Manchester- a friend is having treatment there as part of a clinical trial. When I was first dx stage 4 I wanted a second opinion. Ended up at The Royal Marsden, but the Christie was also of interest. I have been to the Christie and I felt that the hospital was a breath of fresh air.

My treatment is in York. This is because the oncologist at the Marsden recommended him. I wanted a fresh perspective, away from home and my husband works in York. This is a decision that proved to be wise as I have fantastic care. My York doctor was very pleased with my response. Back in March he was more optimistic than I have ever seen from a cancer doctor. The professor in London told me that he had a patient who had been on Herceptin for 13 years. There is much to be hopeful about but the fear is always there.

Great to talk to you.

Liz x

P. S A photo of me with my husband Richard and baby Eira.

Love seeing your beautiful photos!

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