46 / Hi / Comfort of knowing you guys are here /(IVF link?)

Bean73

Hi all

I know this is a weird first post for “Newly Diagnosed”! but Im alone today, the day I got the call, and I literally just wanted to reach out to my sisters who know how I feel. It’s comforting to know you’re out there. 

Right now I can just say hi. I’m still numb and I can’t bring myself to write the details just yet. I will go into my story later but it’s literally only been a few hrs since I got the Big C phone call and then met with my lovely GP who stayed back late for me. 

The timing today was awful as my husband is currently overseas and he’s still asleep over there. I even called but he sleeps through anything!

I don’t want to tell my parents yet until I know more about what my diagnosis is. They will worry themselves sick and that would make me feel even worse. 

It is such a shock - no cancer family history! The “coincidence” is that I just had 3 IVF cycles - last one December 2019. it’s just making me think, all those oestrogen injections.... (I know the studies say the link is inconclusive - this may just be me trying to rationalise it atm)

Anyway thank you guys for humouring me - I will write more after my specialist appt. My GP got me in for tmr morning for which I’m eternally grateful. I’m glad I don’t have spend the weekend not knowing more info.

This is a whole new world to me and I admire each and every one of you. 

xxxx

kmakm

Hi @Bean73. Welcome, and congratulations on forming cohesive sentences at this stage! You're already amazing.

I didn't tell anyone outside my household what was going on until after the pathology was back on my tumour, it had been removed, a sentinel node biopsy had been performed (to see if the cancer was in my lymph nodes or not) and I'd had a second operation to get clear margins. And then I sent my husband to tell my parents!

There's no right or wrong in the shitshow. You just do you, and block out anyone who has issue with that. People are going to say a lot of weird shit to you. Take what you like and ignore the rest.

The first big decision you'll make is whether you go public or private. BC treatment can be very expensive so think carefully. We all have different experiences of both systems; again, there's no right or wrong.

Signing up to BCNA's My Journey online tool is a good thing to do. Good info clearly expressed. Stay away from US forums, their healthcare system leads to some dreadful experiences. Anything fro. Macmillan in UK is good.

If no one offers one to you, ask about a breastcare nurse. They can be a huge ally and a fount of information, comfort and a conduit to your medical team.

There's a ton of information but that's probably enough for now! Take things one day at a time, put one foot in front of the other and you'll get through. This is the worst bit I promise. The biggest of hugs to you lovely, K xox

PS And you might find this amusing along the way!

Tinks

Dear Bean73

I’m sorry to hear of your terrible shock today. Your GP has worked wonders to get you in to a specialist so quickly, but equally you have very little time to think. Is there anyone who can go with you? If not perhaps take a note pad and write down key things because it is normal to remember things patchily under severe stress. The helpline is great to debrief after you talk to the doctor and get support. So is this forum!

Huge hugs Tinks xxx

Bean73

Thank you @kmakm ❤️

That sounds like the way I would handle it in terms of letting the least possible people  know!

I have a med cert to take tmr off work in case I’m not up to it emotionally after my specialist appt tmr morning - but I’m here stewing over what to say my reason is for calling in sick! I certainly don’t want to tell my work the real reason at this stage. 

Then I’ve got my uni studies that I guess I’m going to have to defer on. It’s too early to know what treatment I’m gonna get but studying may not be the best thing with the side effects, I don’t know. It sucks, as my goal was to finish this 2nd degree before I turned 50. 

Thank you so much for all the information and the tip about private vs public. I actually only recently got private insurance and just figured that’d be the way to go. I will do some research. 

Today has been so surreal, numbing and almost like I’ve been superficially acting out my life and the necessary conversations, but being detached & not feeling it. I’m sure it will get better after the initial shock. Next my husband, parents and brother will have to go through the shock and I don’t want them to have to!  

Again thank you really soo much for reaching out. ❤️

I feel like I’m gonna spend tonight listening to YouTube for a distraction. Not sure if I’ll get any sleep!

cranky_granny

 hugs heading your way @Bean73 this is the best place to come to for help. 
My GP was on the ball as well with getting me in quickly I went through the local cancer clinic saw the surgeon in her room after my clinic appointment with oncology. Fortunately the breast surgeon operated public as well as private and I went through the public system for everything but her appointments. Hardest part for me was the loss of income. I was only casually employed at the time so super got hacked quite heavily. 
Going private or public is purely your choice. And also what you can afford to do. 
I did find I needed someone with me at my appointments the information overload was amazing and still is. I caught on quickly to having a second set of ears that took the notes and always had a list of my concerns at the ready.  
Telling family is the hardest part. My aging father didn’t take it too well. Took my sister-in-law and brother with me for that one. 
You do find out who your friends are throughout this
the People on this site feel like real friends those trusted ones that you can tell anything to without fear of feeling silly or stupid, even though I’ve  never met any of them in person.
Keep us posted if you feel like it. Or just browse the site. The search bar is handy

kezmusc

Hi @Bean73,

Stinks to be here lovely, but welcome.  It's a white hot fear that runs through you when you first find out.  The start is just plain awful and your brain just won't quit thinking about all the worst case scenarios.  The roller coaster of emotions is indescribable to someone who hasn't felt it.  Once you have  more facts and information you feel somewhat more in control.

Definitely seek out a Breast care nurse to help you navigate the brand new language you are about to learn.
Everybody searches for "what caused it" at the beginning.  Your injections probably had nothing to do with it considering how recent they were and so many of us have no family history.
Rest assured, you did nothing wrong. Just plain out sucky bad luck. There is no room for guilt in this trip. 
Check out your insurance thoroughly. A lot of people are very surprised at just how much you can be out of pocket.

I wouldn't write your studies off yet.  Some  of us get through this shit show relatively functional.  There is nothing to say you won't be able to continue when you've got your head around this mess. At the very least it will give you some distraction.

Keep talking to us lovely.  We get it. It doesn't feel like it at the moment but you've got this.
xoxoxoxo

Jwrenn

Hi @Bean73, big hugs for you. I was told by a nurse that she dropped her private health cover as you get just as good care ( if not better sometimes) in public. But it’s great that you can still see the surgeon privately and quickly as the waiting time to get appointments in the public system is frustrating. Christmas/ new year was not the best time to get diagnosed.

We told both sides of our families as quickly as possible as it was Christmas and hard to keep something like that to ourselves. For my family we sent a private group message to everyone which was a mistake in the end as my poor sister has a terminal brain tumour and it was a big shock to her. Should have been more sensitive. 

  

We had no history of cancer in the immediate family till December 2018 when my sister had brain cancer diagnosed, then my 25 nephew had testicular cancer early in the year and then me. I do have 2 cousins who have also had breast cancer. My sister had an ivf baby who just turned 21 so it is probably just a  coincidence.
 

 Hugs Jenny xx

kmakm

Reaching out is what this forum is all about @Bean73. Someone is always here for you. We all get it, precisely unfortunately! But you'll get through, rest assured.

There are a lot of services and charities out there to ease the experience. If you have chemo there's Look Good Feel Better. And the Otis Foundation provides properties for free holidays.

I got onto meditation early as a way to manage my distress and fear. It was a great help. There are so many apps. I tried a few and settled on Headspace. It has a course specifically for cancer.

Sleep is an enormous problem with this diagnosis and the treatments. Headspace has a huge suite of sleep meditations, wind downs and sleep sounds. I imagine many of the others do as well. Sleeping pills can be excellent to knock you out when you are desperate. Doctors seem reluctant to hand them out, so many of us have used them once a week as a 'treat' for example. Have a chat with your GP or oncologist if you think it's going to be an ongoing issue.

I hope today goes as well as possible. Hang in there and let us know how you get on. K xox

Dory65

Bean73,
fingers crossed it's very early BC. Good luck.

Afraser

If you need it, take time off. Blame it on Corvid-19 if necessary but do what you have to. But if you feel well (remarkably, some of us do) think about work as a great distraction from dwelling on things you can’t fix. Best wishes.

Sister

It's too early to make big plans.  This time after diagnosis is a vacuum and not one for making any decision that doesn't need to be made.  With your husband overseas, you probably do need someone to lean on and take to appointments - friend, family?  Someone with a level head that you trust.  And as for work, is there someone in a high enough position you can ask to keep things confidential but run interference for you?  (Actually, they're obliged to keep it confidential if you ask for that.)  Remember, you don't have to go into details with anybody, even friends.  You are perfectly within your rights to say that you're going to tell them something but you're absolutely not ready to elaborate or answer questions.  For me, I bunkered down after diagnosis.  My husband told his family (had no choice as his Mum was looking after the kids at the time), and I spoke briefly to 2 key friends and asked them to pass on the info to others but that I did not want people calling me.  Everything went out to the friendship groups through them until I started a blog a few weeks later.  At work, my line manager knew I had the appointment - I sent an email to her and another manager that night.  They acted on my wishes as far as letting others know.  

It's hard for you in particular with your husband away but we're here to sound off with whenever you need it.

Bean73

Hello everyone

Thank you all for your support on my first post here in March 2020.

What a difference a year makes!
I am now here sitting with my lovely chemo curls
after

- 2 types of chemo,
- 2 surgeries (lumpectomy and then went in again to remove all lymph nodes) &
- radiation
All finished in Dec 2020.

Post care is
- Goselerin  injections 1 x mo
- Exemestane tablets daily
- Zometa infusions every 6 mo for 2 yrs 

In June this year there was some calcification showing up in a mammogram. I went back today for a second mammogram  and the spots are slightly bigger, so I have a biopsy booked this Friday. 

I figure worst case scenario is that if it is malignant it has been caught early. 

Cath62

Glad to hear you are going well and all with your chemo curls too @Bean73. I am a year post treatment too. Congratulations on getting through it all. 

AllyJay

Great to hear that you're through the other side of chemo and surgery. You don't say if the calcifications are in the same breast as before, but if so, hopefully they may be scar related. If not, as you say, it would have been caught very early. I hope it's all just something of nuisance value.

Bean73

AllyJay said:

Great to hear that you're through the other side of chemo and surgery. You don't say if the calcifications are in the same breast as before, but if so, hopefully they may be scar related. If not, as you say, it would have been caught very early. I hope it's all just something of nuisance value.

Thanks. Ah! Yes it is the same breast so I am really hoping it is scar or radiation related. I guess the fact that it has changed in 6 months is concerning though. If it is malignant. I wonder if it will be treated with radiation or chemo?

Bean73

Cath62 said:

Glad to hear you are going well and all with your chemo curls too @Bean73. I am a year post treatment too. Congratulations on getting through it all. 

Thanks Cath. Wow, I just read your bio - we were diagnosed the same time. It weirdly worked well for me during Covid as I was able to keep everything confidential from my workplace since we converted to WFH during my chemo.
I am very private about my health and only my immediate family (and BCNA family!) know