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

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.

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.

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

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

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!

My journey of B C | BCNA Online Network

24 Replies

Butterfly_40
Member
9 years ago
Thank you Mima and Adean for sharing your experiences.
Mima, I am sorry to hear you lost your husband 8 years ago. I can't imagine how hard it was for you. Now you are fighting with BC without him, It must be tough. It seems you have great friends supporting you. There are so many women here so inspirational and supportive.

BC definitely touches so many people surrounding us. I have 3 close friends had it, one is a 8 years survivor still taking Tamoxifen just for a peace of mind, one is a 3 years survivor, one is a 2 years survivor who is pregnant now. Two of them had radiotherapy, one works for the community like you , she had radiotherapy after finishing work every day. She said she really struggled to get up for work towards the end of the treatment and took her about one month to feel better. So she wouldn't recommend anyone to do it. I was planning to take time off work if I have radiotherapy, but unfortunately I need mastectomy. I am waiting to a plastic surgeon.

Wishing you have an amazing trip!

Lots of love and hugs for you!
adean
Member
9 years ago
Im 4 .5 years post diagnosis. Im an educator in aged care l told a couple of girls and then l got them to tell all the others then l just got lots of hugs and no one felt incomfortable.
Mima
Member
9 years ago
Hi @"Butterfly 40"
like you i was also diagnosed just before Christmas 2016. I am also a nurse working in community. Told my upper manager by showing him the results as I couldn't get the words out and asked him to tell my manager but with strict confidentiality, it was just before christmas and I felt bad enough spoiling my family's Christmas. I did tell my team just before I went on leave to have surgery. I am fortunate to have lots sick leave and because the day to go back to work was only a couple of days before booked annual leave i chose to run the two together.
Have kept in contact with a few colleagues and asked them to update the rest. Have told a few friends including one who is an 8 year survivor and we have compared treatments and scars. This was very helpful.
BC seems to touch so many people-hairdresser I went to before surgery her mother and grandmother had bc with many years survival and my best friends mother is a 30 year survivor.

Will have radiotherapy after my trip and not sure how this will affect me but I have oodles of sick leave anyway and only work 3 days a week now so hopefully will manage around this.
In the past work was my safehaven after death of my husband 8 years ago, would be fine with clients, though would bawl between them in car, pick myself up and go onto the next.
Am sure you will find your balance.
Butterfly_40
Member
9 years ago
Hi Paula,
Thank you so much for sharing your experiences and kind words! I am sorry to hear you had a recurrence. You have done so well not taking much time off work while having chemo. How are you doing now?

I often think I may be not brave enough and too emotional. I am so glad that someone is so much like me and a nurse too :) . I have come to terms with the diagnosis, but saying out the words "breast cancer" and hugs are definitely the two things that get my eyes welled up really quickly. I really like the idea you ask people not to hug and ask you how you were doing in public area and work place. I am so grateful that I am surrounded by all the caring families, friends and colleagues. I agree that most things the thought of it is worse than the actual event. I am sure I will be fine when back to work.

I have already joined the reconstruction group and young woman 's club( I love to be classified as Young woman here :) ).

Wish you all the best!

Lots of love and hugs for you!
mum2jj
Member
9 years ago
Hi Butterfly 40, I have been away for a few days and just getting up to speed. I am one of the group leaders of the choosing breast reconstruction group. If you haven't already you are most welcome to join us (that's my next port of call). Once you join you may like to read posts and view our photo stories. When I was first diagnosed my husband told everyone. I was like you and was emotional and teared up when I said the words breast cancer . I'm not sure why this happened, even when I had come to terms with the diagnosis it happened. I put the word out at the school where my kids attended that I was happy to talk but that nobody was to come up and hug me and ask how I was publically as I didn't want to break down at the school. I am also a nurse and whilst all my team knew of my diagnosis I specifically asked them not to hug me and ask how I was whilst I was at work as I didn't want to cry at work. Work became a bit of a sanctuary where I could do normal things and not think about my BC. I have had a recurrence so lived this twice. I chose to work during treatment, but I always had the week off after chemo. That worked for me, but some find it too hard. You will soon work out what's right for you. i did the group email also. I used to send it out after each treatment. The feedback I got was really positive and people realize you just can't individually reply to everyone and my friends were fine with that. Going back to work also caused me anxiety but like most things the thought of it was worse than the actual event. Remember your friends family and colleagues all care for you and if you put the word out that you can't discuss things at work, they should understand.
Huge hugs
Paula xxxx
iserbrown
Member
9 years ago
It's amazing how when this journey starts you are hungry for information and you learn about specialists that you didn't know existed nor have a need for prior and lots and lots of terminology. Also you become hardened to look at photos of recons that you would've squirmed at prior, like your hubby did! I am sure once your options are laid out by your team the decision will become easier for you both. Take care
Butterfly_40
Member
9 years ago
Hi Jane,

Here I am back to the club. I checked out my beautiful plants, they are surviving well without my attention ( I am a succulents and cactus lover :)). They have been my saviour through my BC journey, I can be in the garden for hours not knowing the time has gone.

Thank you for sharing your experience. It seems that it was an easy decision for you. I am so happy for you having the great results from mastectomy and reconstruction. I have been wondering when those blue dye are going to fade away. It seems it will be there for a long time... never mind, it's the least thing I worry about at the moment. My husband got frightened when I showed him a picture of an abdominal incision from tissue flap reconstruction. Poor man! Since then he doesn't want me have the flap to go through having the tummy slashed open. I kept reassuring him the plastic surgeon might not offer me flap reconstruction. I am a relatively small person. I am sure there will be options and I will figure out the one best for me.

Hope you are enjoying Australian day having the yummy lamb on your barby :)

Lots of love and hugs for you
Hopes_and_Dream
Member
9 years ago
Hi Butterfly 40, my cancer surgeon is also a breast cosmetic surgeon so was able to give me all the options. I could have had a lumpectomy with radiation or a mastectomy. I am only small breasted so while I had the option of a lumpectomy it wouldn't have been the best choice for me. Without a lot of breast tissue there was the danger of not clearing the margins and there wouldn't have been much of me left!! I had a nipple sparing mastectomy with an immediate silicone implant.
He did an amazing job matching size and shape to my healthy breast so 6 months on I don't think anyone could tell the difference (except for a touch of smurf - 3 fading blue circles from the sentinel node dye :smile: )
We are so lucky to have lots of options for reconstruction - I'm sure you and your surgeon will find what is right for you.
I know what you mean about spending time on the site. It's hard not to check in as we do genuinely care about each other and really want to offer support.
Hope it is nice sunny day where you are and you can enjoy some time in your beautiful garden.
Let us know how you go after seeing the plastic surgeon. Take care, Jane x
Butterfly_40
Member
9 years ago
Hi Jane,

Thank you so much for sharing your experience!
I am so happy for you that you caught it early, no chemo and radio. Can I ask how did you make the decision to have mastectomy and reconstruction with implant? For me, my breast surgery offered me the option of lumpectomy or mastectomy, but recommended lumpectomy. He said to me I will need mastectomy if the pathology results show unclear margin. I made the decision for lumpectomy at the time, because I was in a shock state, I felt it was too much for me to cope losing my whole breast and I would like to give it one chance to be with me. My pathology results showed clear margin, but LCIS across the whole specimen. Although I am going to have mastectomy now, I don't regret for my decision for the lumpectomy . I am looking forward for the appointment with a plastic surgeon to see what options are there.

I love your tattoo of pink ribbon on your wrist!
I have found so many amazing, strong and supportive women here. I think I have been spending too much time here since I join in the club. I forgot my beautiful plants in the garden need me to look after them
Hopes_and_Dream
Member
9 years ago
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