My journey of B C

Butterfly 40

Hi everyone,

I was formally diagnosed BC with multifocal invasive lobular carcinoma from biopsy 2 days before Christmas in 2016. I had lumpectomy and sentinel nodes biopsy 2 days before New Year. I recovered really well from the surgery. 

From the day I went to GP to check out a lump I felt on my breast to the surgery, it was only 2 weeks. I was in total SHOCK. I cried so much. I went through WHY ME. I am 40 years old, never smoked, no alcohol, no drugs, I go to gym 3 times a week, eat healthy, I am a nurse who always care for others. After the why me phase and after surgery, I looked at my two beautiful children and husband, I felt so lucky and grateful that I have them. I am surrounded with lots of love by my family and friends. 

I was at stage 1, grade 2, my lymph nodes were clear, but There were LCIS across the whole specimen. The multidisciplinary medical team recommended mastectomy based on my age. My breast surgeon expressed his opinion to me prior to the multidisciplinary meeting, he preferred not go for mastectomy, just regular check ups. Because of the recommendation from the multidisciplinary meeting, my breast surgeon referred me to a plastic surgeon and asked me to think about whether I go for mastectomy. I do want to keep my own breast, but I don't want to leave any chance for the LCIS turn into cancer again. I have been reading and gathering information about mastectomy and reconstruction. I don't know which one is best for me, implant or tissue flap? 

As I have been on sick leave since mid December, I will have mastectomy at some stage. I am planning go back to work soon while I am waiting to see the plastic surgeon and the date for surgery. I don't know how I am going to cope and start feeling the anxiety about returning to work. I will face so many very caring colleagues asking me "where have you been " "what happened to you ", because they would have seen my roster marked as "sick leave" for all this time. Can someone give me some strategies how to cope better returning to work ? 

I have been reading some of the discussions in this forum, there are so many of you are so inspirational and so supportive to others. Thank you for sharing your journey and helping others to get through the challenges

Cosette

Hi @Butterfly 40. I'm sorry to hear about your diagnosis. I'm sure members will jump in and share their wisdom, but I want to let you know about some resources we have that you might find helpful. 

The My Journey Kit is a free resource for people that have been newly diagnosed. It contains information and a journal. Your breast care nurse may have ordered one for your, but if not, you can order it online here or call us at 1800 500 258.

We have a group for Young women here. Our wonderful young women like @InkPetal, @Vivianna, @pink_pen, and @gurneys can chime in further.

We also have a group on Choosing breast reconstruction here and members like @Jane221 and @mum2jj are very knowledgeable on this subject.

primek

You know I decided to just tell my team of nursing friends. I created a facebook page separate from my normal one and invited people in. This became my journal. I updated what was happening including photographs etc. That way no one had to ask..it was there. It also gave them rare insight into what was happening to me. I often attached links about treatments. Reconstruction  stuff. Surgery. Side effects. All those things. That way not only did they see beyond pink sister but the real daily struggles of a woman with bc and the fears / treatment we endure. When people know they then become a source of support and strength too.

I emotionally found I couldn't work, and also physically. I work now in mental health. I had a bilateral mastectomy with immediate reconstruction with tissue expanders which took me 6 weeks to heal. I was then onto chemo which I found very hard.

I was able to claim trauma insurance against my life insurance which took the pressure off and used some long service leave also. Your employee actually needs to be able to provide you with alternative duties if your current work role is too demanding. That is something that can be considered. I have returned to work but gradually building my hours as the fatigue following chemo was hard and I needed to think of myself and family. 

Hoping all goes smoothly for you. I am happy with my choice of reconstruction. There are many different options and it is often easier to plan it for the same time. I miss my breasts, but my fear of return made my decision easier. 

Karenhappyquilter

I found group emails helpful.  Sent them every so often updating friends on my treatment.  I am sure some appreciated it, they didn't want to ask but wanted to know.

I am retired so I can't help specifically with advice about going back to work.  However overall I found I wanted people to ask me how I was going.  I found it odd and a bit hurtful when people didn't ask me how I was going.  No doubt people had various reasons for not asking.  So when you go back to work it might turn out you appreciate being asked what happened.  There are a lot of kind caring people out there and their supportive interest in you will help you.

i couldn't have worked through my treatment in any event.  Everyone is different, some people cope better with the treatment than others, but it is very fatiguing for some of us.  Nursing is hard work and you are on your feet most of the day, not for everyone while undergoing cancer treatment.  Very best wishes for the treatment.  Karen 

Afraser

I was only away from work for a week (mastectomy, no reconstruction). I felt strongly that I would be better working if I could and I had told my boss and co-workers immediately I was diagnosed, so they knew what was going on from the start. Telling others (apart from family) was more gradual. Sharing it or not is a very personal decision, and I can only really talk about what I did, Others make different decisions, for good reasons. Being open about it made it easier for me. I took the day off for my chemo day when it was once every three weeks, but only took a morning off when it was weekly. I was lucky and had no nausea or fatigue, so it was pretty much business as normal. I chose to wear a wig - it was light, easy and comfortable and while all my immediate colleagues knew (at least three wanted one!), I liked the fact that I could walk into a meeting (or a conference) and my health didn't become an immediate topic. As I actually felt very well, this was good. It's hard enough to deal with people asking (kindly) about your health when you are unwell, but it's pretty weird when you are feeling alright. I found people did ask how I was, but to a certain extent that  may have been because I opened up about it first.

It may help if you set the tone about going back to work. A staff member of mine who returned to work after a very painful bereavement, worded me up first - no "so sorries", no condolences, just business as normal and some funny stories would be much appreciated. So I worded up everyone else, and that's what we did. Perhaps you have a friend or colleague at work you can talk to about what you would prefer? 

Very best wishes

Butterfly 40

Thank you so much ladies for sharing information and your experiences . 
What a brilliant idea to create a separate Facebook page to share with your friends for your special journey, Kath. And group email is a great idea as well, Karen. I have been sharing my journey with my nursing friends through messages. It can be tiring to reply everyone 's messages though. I really appreciate that they are all care about me. I am not going to hide my diagnosis to my colleagues. I would like to see more women to be more aware of BC. My anxiety is how I am going to cope mentally when so many of them ask me throughout the day at work. There are about 30 nurses in one shift. I currently still get emotional and my eyes get filled up with tears really quickly, when I tell someone that I had breast cancer. 

I definitely will really appreciate when they ask me how I am going. I probably will feel a bit hurtful like Karen if some people don't ask me for whatever reason. I am going to have all these mixed feelings for sure. I think I am just going to concentrate on my patients. Thankfully my work is not so much demanding physically, besides just standing all day. But mentally can be stressful and challenging at times, looking after the sickest babies and stressed parents. 

My unit manager is very supportive for me returning to work. I will gradually building my hours and drop from 12 hours to 8 a day. I will request no night shifts for a while as well. 

Thank you ladies! Wishing you the best! Lots of love and hugs for you!

RNSW

Hi Butterfly40,
It is an overwhelming experience and definately hard to accept at 40. I was diagnosed at 40 also and I also was living a healthy lifestyle.  
Going back to work will be a good distraction. I had 8 months off work and people and kids I work with were wonderful. 
Sending you a hug and best wishes with your future surgery.
Rita xo

Butterfly 40

Thank you for sharing your experience, Afraser! 
You were so amazing only away from work for one week post mastectomy and worked through your chemo.  I am so happy for you did so incredibly well. I loved that 3 of your colleagues wanted your wig! 

Being open about it definitely has made it easier for me as well. I did exactly like you did, told my immediate family and my unit manager (otherwise I won't have my wonderful job back) soon I had the diagnosis. Because it was during Christmas and new year, i didn't want to dampen anyone else 's festive spirits, I told my close friends after Christmas and gradually other friends after new year. 

Lots of love and hugs for you! 

Butterfly 40

Thank you for your sharing, Rita.
I believe going back to work will be definitely a good distraction. It has been an overwhelming and emotional roller coaster, not so much physically. I walked into theatre for the lumpectomy and walked out straight back home within 4 hours. I rested in bed that afternoon, got up and put on my normal clothes the next day. I never felt I was a sick person. 
How long has been since you were diagnosed and how are you doing now? 

Lots of love and hugs for you! 

RNSW

Hi Butterfly40,
I was diagnosed a year and a half ago, but mine was stage 2 which meant after lumpectomy I had to have 6 months of chemo. I then had 6 weeks radiation therapy and now on Tamoxifen.
I am going well thank you. I have never felt like I was sick and just went through the motions of what I had to do.
I have 2 kids also and made sure I spoke to them about what was happening (hardest thing I have had to do). 
It is so good that you have caught it when you have. A year after I was diagnosed my work friend went for her first mammogram at 40 and they found early breast cancer. Alot of women don't realise they can have their first mammogram at 40. I am so glad she listened and went because we are both doing well.
Bestest wishes
Rita xo

melclarity

@Butterfly 40 So sorry to hear of your BC journey so far, its still very raw and new! Its great that you are early stage too and they are onto it so diligently. I was 43 at first diagnosis lumpectomy and rads and tamoxifen 4yrs. I had a recurrence at 47 inspite of those things, was devastating! It came back in my lumpectomy scar, undetectable, IDC Stage 2 Grade 3 ER+, did Chemo and now 1yr post and on Arimidex. I had 2 major lumpectomies and am big breasted, 2015 surgery had lymph nodes removed also. My Surgeon always recommended based on my diagnosis the lumpectomies that they were equivalent and I had nothing to gain by Mastectomy. BUT....whilst I am happy and healthy 18months on from diagnosis, I have to have a Mastectomy due to the recurrence. I had to pay $800 for BRCA Gene test and is negative, only my Mum is history. Genetic Counsellors said based on all that information that a single only is warranted. So I have opted for that pending next month. My Surgeon will do Mastectomy and Plastic Surgeon will Diep Flap recon as I had radiation 2011 so cannot save my skin for an implant. Lots of women on here had flap or implant, with loads of information which you'll find so very helpful! Join the Breast Reconstruction Group too. 

BC doesnt discriminate, no matter how healthy you are, or not...Big Hugs, its a tough journey! In terms of colleagues and friends, I only told who I wanted to know, it didnt bother me at work who knew, it became apparent when I lost my hair though had a fantastic Wig!!! but was off work for about 3 months due to being so incredibly ill on Chemo. So people became aware. 

Sorry you found yourself here, but you are in awesome company!!! with some incredibly courageous women!! Hugs Melinda xo

socoda

Hi Butterfly 40, I work in a predominantly male work environment and had been selected to work on a special project that I had to promise that I would not take holidays or time off from. I had to notify my boss (for that project) that I had to have a day off to find out my results and one of my male colleagues walked in as I was explaining. That was the beginning of my team finding out. My appointment was 11:30 the next day and by 12:30 they were on the phone to me to find out how I had gone. From that time on I was wrapped in cotton wool, questions were asked so that I could talk and de-stress. I joked around and that allowed my team to joke with me. I had bought a wig because I was told I was to have chemo and wore it to work one morning and then answered yes I had been to the hairdressers on the weekend - whipped it off and then it did the rounds of the team so they could all see what they looked like blonde! I was thrown a good luck party where they had all made home made dishes and bought them in. It has been a total bonding experience and their kindness and compassion have been an incredible support. I in turn have been able to listen and assist when health issues have arisen in the team and I consider myself so very lucky to work with such wonderful people. One of the lovelies even went so far as to offer to give me regular breast examinations to ensure I was okay - Bwahahahaha!!!!! Cheeky bugger!! I'm sure you will deal with the queries regarding your health with no problem and if you do have a little cry there is no shame in that. You are on an emotional roller coaster and sometimes your emotions are low and you cry, other times they are high and that's fantastic. Please let us know how you are going Xx Cath

Butterfly 40

Hi Rita,
Thank you for your reply. I am so happy for you and your friend doing well. I was very lucky caught it early. I felt one lump was only 5mm, the radiographer found another one was only 3mm when I went in for biopsy. The small one didn't get picked up by my first ultrasound and mammograms. I didn't know that there is offer of first mammograms for 40 years old. I am sure there are a lot of people don't know. 

I was very hard to tell my children about it, I cried so much when I was thinking what and how to tell them.  My 15 years old girl responded really well and gave me lots of reassurance after she did a little research online. I felt she suddenly became a mature young woman. My 9 years old boy didn't show much emotion initially, but since then he often comes up to me and asks me "do you need anything I can get for you mum?". He always hugs and kisses me and telling me he loves me so much. It gives me so much comfort. This school holiday has been the best ever, my husband has been able to take leave from work from the day I told him I have BC until next week. Both of us have been always working hard, we never spent the whole summer holiday together with the children. Despite my misfortune, we enjoyed so much spending time together. It helped me so much to get through this difficult time. 

I won't need chemo or radio if I choose to have mastectomy, I will need take Tamoxifen for 5 years. I am lucky enough not losing my hair, but I will lose my breast. 

All the best! Lots of love and hugs for you!

Butterfly 40

Hi Melinda,
Thank you so much for your reply! I have read so many of your posts from different discussions. You are such an incredibly beautiful woman who always there share your journeys and support others. You are so kind and inspirational. Thank you so much for what you are doing!

You have been through quite a bit in your journey. You are a very courageous woman. I wish you the best, hoping you get the date for your mastectomy and reconstruction very soon. I have an appointment to see a plastic surgeon in mid February, I will decide what type of reconstruction. I have joined the reconstruction group which is very helpful. 

Lots of love and hugs for you! 

Butterfly 40

Hi Cath,

Thank you so much for sharing your experience. You made me laugh. I am so happy for you that you work with so many wonderful people and you have so much fun working with them. Being a nurse, I work in a predominantly female work environment. I am sure my colleagues will give me lots of support. I will be very open about it and hoping they will be more aware of BC and take initiatives. 

I love your wise words about emotional roller coaster. That's exactly where I have been, I think I will be in it for a long time. Thank you for that. 

Lots of of love and hugs for you! 

Hopes_and_Dreams

Hi Butterfly40, so sorry you have had to join us but as others have said, you will find the most amazing, strong, supportive women here. 
I completely understand how you felt with the speedy timeframes from diagnosis to surgery. My mind was spinning but I wouldn't have it any other way, I just wanted that cancer out of me!!
I had a left mastectomy with immediate implant almost 6 months ago (1.3cm IDC, grade 1, stage 1 - no chemo or radiation).
 May team are all female (incl one who is 3 yrs post mastectomy). I told them I had a Breastscreen call back and I let them know my biopsy diagnosis straight away. 
I knew I had to tell others but really struggled with just saying the words out loud. 
I am a manager of a Gold Coast bank and sent a group email to all the other managers (for sharing with their staff) letting them know what was happening with me.  I said I had no symptoms and my cancer was picked up during a routine mammogram -  gave them a gentle prod to make sure they were checked. I heard later that about a dozen younger women did just that!  
I still find it difficult telling people and yes, even after 6 months my eyes well up. Saying it out loud makes it real and brings it all back.
But I also want to get the message out there so I had a pink ribbon tattooed on my wrist in November. People will notice and I will tell them.
Wishing you all the best with your surgery decision, let us know how you go. Don't forget that we are all here for you! Sending a hug, 
Jane xx