Newly diagnosed both breasts

Andrea_J1

I was diagnosed on the 12th November with cancer in both breasts.  Stage 1 in my right and stage 2 in my left.  The right one was found during an ultrasound.  
My Mum passed away from cancer - started off as breast and metastasised to her bones. She has been gone now for 18 years.
I work as a nurse.  I am terrified! 
I am having breast conserving surgery on the 12th December.  
What are peoples experiences for recovery with both sides?  

I would really appreciate any feedback.  Sorry if this doesn't make sense.

SoldierCrab

I had a double mastectomy in 2012 and no reconstruction I recovered quickly from surgery.  there is no need to be sorry @Andrea_J1

Below are a couple of links to help you find your
way around the forum and also how to find a breast care nurse and how to order
a MY journey Kit if you haven't got one yet. 

It can be a whirlwind when we first get a
diagnosed.... Breathe and take it one step at a time. 

Navigating the online community
formerly the what and how thread.

http://onlinenetwork.bcna.org.au/discussion/14879/navigating-the-online-community-formerly-the-what-and-how-thread

Breast Care Nurses

https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx 

My Journey online tool and other resources. 

https://www.bcna.org.au/resources/

BCNA Helpline 1800 500 258

If you have any questions, concerns or require any further
information or support please call 1800 500 258. BCNA’s helpline will now be open from
9am-6pm Monday to Thursday and 9am to 5pm Fridays.  

 

How to understand your pathology reports

https://www.cancer.org/treatment/understanding-your-diagnosis/tests/understanding-your-pathology-report/breast-pathology/breast-cancer-pathology.html

Andrea_J1

Thank you SoldierCrab 

poodlejules

Hi @Andrea_J1. You make perfect sense ! So sorry about your diagnosis . I didn't have it in both breasts just the one but there will be others here who can give you advice and comfort. I'm coming up to 2 years since my op on the 19th Dec. A rotten time of year to be in and out of hospital but you might get some tips from the Diagnosis at Christmas thread. Once you have a treatment plan, things really do fall into place and you get used to the whole idea.Good luck with it all, thinking of you !

primek

Hi and welcome. It makes perfect sense to me. 

I too am a nurse and I lost a sister to bc. But both myself and her daughter have gone through surgery and treatment following a bc diagnosis and both doing well. I'm almost 3 years. My niece is 16 years post treatment. 

I chose a bilateral mastectomy and reconstruction and also needed chemo.

Have they offered you genetic counselling? It may well be appropriate given the bc is in both breasts and family history.

@SoldierCrab could you add in your  wonderful links. 

Ask any questions as we are here to help as we can. Kath x

SoldierCrab

@primek
 you must of been tagging me while I put them up ..... 

Andrea_J1

@primek, apparently I am being referred for genetic counselling.  I only saw the surgeon on  the 26th Nov.  She said about having mastectomies, but also stated that there wasn't much difference between mastectomies and the racket something surgery (I should have written that down). There was so much info.  
 
Has this affected you with nursing? 
Thank you Kath xo

primek

I was unable to work during chemotherapy as was really unwell during it. I returned to work on reduced hours and gradually increased over 6 months. My job is in community so it involves very little lifting, just driving and walking a lot, and being able to focus on listening. 

I was unable to drive after initial surgery for 6 weeks but a lumpectomy wouldn't be like that.
It was my personal choice of mastectomies as my cancer was undetectable in a mammogram 5 weeks before I found a lump. My fear was recurrence or a new cancer that was undetectable. My cancer was aggressive but contained. As I live 500km away from many treatments avoiding radiotherapy was also something I was keen  on as I had 3 boys still at home. 

Thanks @SoldierCrab ...we must have all been typing at same time.

Sister

Welcome @Andrea_J1 It's perfectly reasonable to be absolutely terrified.  I lost my sister to this disease nearly 20 years ago and I felt like my world had collapsed when I was diagnosed.  This forum has helped me through some of the worst periods of my life and given me some great laughs as well.  As you move into treatment, you should find that you can regain some stability as you focus on what has to be done.

I had the genetic testing and it came back as negative for the known but will be reviewed as future discoveries are made.  The geneticist was pretty convinced that there is something going on but it could just be that my sister and I are an unfortunate coincidence.  For me, it doesn't really matter as that horse has bolted, but it may be useful information for my kids.

I can't comment on bilateral as I had one breast affected and chose, on surgeon's advice, not to take the other one off.  I had a wide excision and sentinel node biopsy followed a couple of weeks later by a mastectomy and axillary dissection once the path report came back.  I needed some help with some things for the first couple of weeks? (anything that I had to reach for such as hanging out washing) and I would get help in the first few days at home with getting in and out of the bath (more as a safety thing rather than a need).  The time frame is just a guess because it's a bit of a blur, now.  I'm a librarian in a school so my job involves a lot of reasonably heavy lifting and reaching.  I took the active treatment time off due to the impact of chemo but also because of the manual aspect of the job.  I have been back at work now for 7 weeks and I know that I do not have the same upper body strength that I had before but hopefully, I'll get there. 

Come and talk to us when you want to - there's usually someone around.

kezmusc

Welcome to the forum @Andrea_J1,

It is terryfing at the start.  So many what if's and unknowns.  Once a plan is in place after you get your surgery results you will feel a bit more in control.

The surgery is called a racquet mammoplasty.  Seems to be quite popular now from what I see.
I work in a hopsital surgical ward, I am non clinical though, this is just an observation from the bookings.  Apparently it provides a better cosmetic outcome compared to the straight lumpectomy. More even, they say.

I can't help with the double whammy I am sorry. I had right side lumpectomy and stage 2 axillary clearance. The drains are probably the worst bit at the start.  Even having a shower was a marathon effort with those things in. I needed help putting a shirt on and hanging out the washing for the first few week or so but a lot of that was from the axillary surgery rather that the breast.

I had three months off work but that was just because I had the time up so why not right?.  I knew I was doing chemo and wanted to see how everything went first.  I probably could have gone back to work after about a month I would say. 


Keep chatting to us.  There is a huge amount of love and support on here.

All the best lovely.

kmakm

Hi Andrea. I had a double mastectomy and reconstruction in April this year. However I started with a wide local excision and then a re-excision a week later for margins. No axilliary clearance. I had good range of movement (though not normal) immediately. You have to do the exercises the physios give you every day, they help a lot. If there are no problems you'll probably find three weeks is a good amount of time to recover reasonably well. Physically anyway. Emotionally it can take a lot longer. Some people are good after two, some after four. We're all different.

You'll need to prep your house so you don't have to reach too high to get something! You might need a hand washing yourself for the first few days.

Something you should mentally prepare yourself for is the possibility that the size of your tumours may be larger than estimated from the mammogram. This can change your treatment plan.

My sister died from BC 17 months before I was diagnosed. I understand your terror. We've all felt that cold hand grip our guts. I can promise you that it gets better. Once treatment is underway you adjust, and move forward. We're with you here. Stay in touch. Big hug, K xox

Andrea_J1

Thank you all for you positive comments and support xoxo
Tomorrow is my pre-admission clinic.  So the nerves will be frayed once again.

arpie

All the best for tomorrow & the lead up to your surgery.  The waiting is always the pits.     Try & keep busy doing stuff you enjoy doing, to keep your mind off it all ..... 

Take care xxx

babysaurs

Hi
I was diagnosed with stage 2 both breasts 2x different cancers at the same time back in September 2015. I had to have a bmx then 6mths of chemo and 5 weeks of rads. I found out after Im braca1 +
I found recovery ok my recon was long and uncomfortable though. Hope this helps.