Two months after finding the lump

EmimEmim CanberraMember Posts: 27
Hi BCNA community,

Today is exactly two months since 14 June 2018, the day I found the lump in my right breast that changed everything.  I thought it was as good a reason as any to introduce myself and summarise my journey so far.   It was cathartic for me to get this all out - but is longer than I intended ( so I fully understand if you skim or don't read it!). I am 41 and live with my partner and three cats, we don't have children.

Discovery and family history
Two months' ago, I put my hand on my right breast and felt a firm lump. My partner felt it too, to make sure I wasn't imaging things, as it seemed to have come from nowhere.  I previously found a lump in 2016, which was a fibroadenoma. This lump felt different. 
I have a family history of breast cancer on my fathers' side. So I knew it was important to get it checked. After my GP examined it, she arranged an appointment the next day for a mammogram, ultrasound and biopsy. I knew then what she thought it was, although she tried to reassure me that it might be benign. 

Scans and biopsy
First up was the mammogram, starting with my left breast, which while uncomfortable, went seamlessly. Next was the right breast. The lady seemed frustrated with me for not following directions properly, but it hurt so much I burst into tears. Up to that point, I had been almost numb about it all. She offered to get my partner from the waiting room, but I thought I might get more upset, so I sat in the change room until I regained my composure. Following an ultrasound, a doctor performed a core biopsy and two fine needle biopsies of other spots (since found to be fibroadenomas). The doctor told me that his job was to be thorough and prepare for the worst case scenario, and that I should try not to think about it until I got my results (which of course had the opposite effect). 

Diagnosis
My GP told me in a factual and caring way that I had a 24 mm ER/PR positive tumour (the HER2 results were unclear), and while it would be a matter for the breast surgeon and oncologist to assist me to decide my treatment plan, I would likely need a lumpectomy or mastectomy, followed by chemo, radiation therapy and hormone treatment for 5/10 years. Everything she said has turned out to be pretty spot on. The most difficult part was next - telling my partner and parents. 

Further tests and surgery
 As the breast surgeon my GP referred me to in Canberra was away, I went to one in Sydney. The breast surgeon said my family history was strong, and referred me for an MRI. While the MRI was costly, it was important to determine what surgery I required as my breasts are dense and the mammogram and ultrasound were not that clear. (I had no idea my breasts were dense or this affected the reliability of the results when I had previous scans in 2016). The surgeon repeated that my pathology showed I would likely need chemo, radiation and HT.

On July 27, I had a lumpectomy, which successfully removed the tumour, and a sentinel node biopsy, which was clear. The day of surgery was tough, because I had a migraine. Thankfully, I recovered and the surgery proceeded. My breast surgeon personally called my partner afterwards to let him know that it went well, which he really appreciated. All up, I have had six trips to Sydney, and my partner or parents have accompanied me each time, their support invaluable.

Next stop -chemo
Chemo starts next Friday, 24 August.  I had my first appointment with the oncologist last week. Just before the appointment, further results came in that it was HER 2 positive ( a previous ISH test reported it was HER 2 negative). As a result, I will have 12 months of herception. I was also advised that the pathology showed the cancer was aggressive and fast growing. I had a choice between two types of chemo - four cycles of TC, or 6 cycles of FEC-D. While the FEC-D may reduce the likelihood of recurrence by slightly, it was also more toxic with additional side effects.  I was given a couple of days to decide and read some material, and I have decided on TC. It was a difficult decision after only a short discussion with the oncologist, but now it is made, I want to proceed without regret. I have also now had a bone scan, CT scan and heart scan in preparation of chemo. 

Work?
As for work, my GP suggested taking at least 6 months off, if not longer to focus on my treatment and recovery. My work is open to me either taking the leave or working part-time, if I can. I think perhaps I should go with my Doctor's recommendation due to the likely/possible side effects from chemo, other treatment as well as fatigue and the emotional impact of it all. I would be interested to hear from others about whether you could work during this time.

Throughout this, my partner has been by my side and my parents cut short a long anticipated trip across Australia to provide support. I have still felt lonely and adrift at times, but it would be so much harder without love and support from close family and friends. Some people have been a bit disappointing, but that's how it goes. 

To end on a happy note, a month ago, we got a beautiful kitten from a pet rescue to join our other two cats and he has brought a lot of joy, laughter and cuddles. 
«13

Comments

  • SisterSister Adelaide Hills, SAMember Posts: 4,242
    @emim While there's differences, so much is familiar in your story.  This disease is isolating, even with the best of support from family and friends, which is why this forum is so valuable.  

    I can't comment on the chemo regimen you are having - others will be able to - as I was on AC-T.  If you are able to take time off work then seriously consider it.  Or you may want to consider trying to work if and when you can, if your employer can manage that.  I have been off work since 5th December for 2 reasons - I could not have worked with any reliability and if I went back for any period of time, I would have had to start my wait again to qualify for income protection from my Super fund (do check out your fund to see if you are entitled to anything).  I kept thinking I would be back each term but it won't be now until Term 4. On the other hand, some have worked right through.
  • AllyJayAllyJay Member Posts: 592
    Hi there @Emim ...so sorry you've had to join our club, but you'll find plenty of support and advice here. You ask specifically about whether or not others have been able to work, either full time or part time. The thing is that each person's reaction to chemo (of any combination) as well as the emotional fallout is so variable. For some, they pitch up, have the chemo, and have very little or no significant issues. Others have a dreadful time, with almost every side effect, and that at an extreme level. You really won't know until you start, how your body (and mind) will react. In life generally, my mindset has been...prepare for the worst, but hope for the best... That way, you won't get knocked sideways if things do go pear shaped. Your employer sound very reasonable and understanding so far. Would they be open to an as yet undecided arrangement. You could put in for leave, and if things are going well for you, then start slowly part time. One day a week first, then building up to your regular hours, or the other way. Hoping all will be well and working as before, but cutting back, or temporarily stopping for the duration? I think being upfront and being flexible (both parties) might be the key. So happy to hear you have a new fur baby to cuddle and spoil. I am a Crazy Cat Lady with four such kitties and it is true that they provide much joy and comfort. Hugs to you and yours. Ally
  • kmakmkmakm MelbourneMember Posts: 7,432
    Hello Emim. What a well written, concise telling of your story so far! Everyone here can fill in the gaps. The emotion, the reactions, the fears. It sounds like you know yourself well.

    Chemotherapy is cumulative, so one plan of attack could be to start off working and give yourself the flexibility to slow down or stop if you need to. I had TC. My infusion was on a Monday. I'm on home duties at the moment, but if I was working I would have taken that week off, and worked the other two in the 21 day cycle. For the first two cycles. But for the second two I would not have been able to. @Kiwi Angel managed to work through TC though not every day I believe.

    The emotional impact is just as important to consider and I'm so impressed that your doctor has spoken to you about this so early. This is where knowing yourself is helpful. I haveca difficult family history with this disease and the emotional impact for me was huge, and continues to be. Some people take it more or less in their stride. It sounds like you've got terrific support. Be prepared for the long slog and be guided by your gut. And go for some counselling if you need to, please don't hesitate.

    When you're ready you might like to look at this TC thread. Myself, @Kiwi Angel and @Finch have all had it this year. If you've got any TC specific worries I'm sure we can help you out.

    https://onlinenetwork.bcna.org.au/discussion/18193/tc-chemotherapy

    It's an isolating disease BC, but this forum is a bulwark against that. It's been a great support and help for me. Enjoy the next eight days, and check out the Otis Foundation. They offer free holiday houses all over the place for BC people. Most of them have long waiting lists so you might want to book something now for when you're all finished. It's good to have something to look forward to!

    Oh and this thread is a great spot for photos of rescue kittens!

    https://onlinenetwork.bcna.org.au/discussion/comment/144194#Comment_144194

    Let us know how you get on. Big hug, K xox
  • Kiwi AngelKiwi Angel Sydney, NSWMember Posts: 1,914
    @Emim welcome to the group. I was diagnosed end of January this year and had 3 surgeries in total that ended with a single mastectomy with auxiliary lymph node removal. CT scan and nodes all clear. I had 4 rounds of TC and managed to work somewhat in my busy and physical job as a vet nurse. I also had the white blood cell injections and never got sick. I had my infusion on a Monday, would work Tuesday and Wednesday (apart from the last cycle where I had the Tuesday off) and then I would be off work from Tuesday through till Wednesday the following week. After that I would work normally u til the next infusion. I found work really helped to give me a sense of normality and take my mind off the whole BC thing but everyone is different in their reaction to it so u have to do what if best for u. My fur nurse was invaluable during all this - when I was home after chemo she would t leave my side and laid in bed with me all day. I almost think she doesn’t like the fact I am back to work now.  :D. I’m also on tamoxifen now for the next 5-10 years and a month I’m apart from major sleep disturbances I seem to be going ok. Xoxoxoo
  • EmimEmim CanberraMember Posts: 27
    edited August 2018
    Thanks so much @AllyJay @Sister @kmakm and @Kiwi Angel for your kind and helpful responses.

    @kmakm, thanks for referring me to your TC thread from earlier in the year. I have had a bit of a look at it, and I am sure I will refer back when I am in the thick of things. You are right that it is important to wait until I am ready, as learning too much can be quite overwhelming. My medical team have all been very good at telling me about the big picture in general terms while advising me to focus on and learn about the next step in front of me, and I have been trying to do that. I am learning about the side effects I will or might experience from chemo, which I am a bit nervous about. I have always been a person who likes to know a lot about what is going on and my work involves a lot of reading and research, so I have had to try to limit myself from reading too much, especially if I am having a not so good day. 

    @sister, I am fortunate to have a lot of leave as I have been with the same workplace for 15 years, so I could take the next 6 months off work on full pay without needing to dip into my super. This is a relief as I am out of pocket several thousand already (I am sure there is a thread somewhere about how costly some treatments and tests are - even with or despite medicare and private health insurance), and we have mortgage payments to keep up.  I would not be able to continue in my usual position, due to lots of urgent deadlines, responsibility and long hours. My boss has arranged for someone take over my position for the next few months, but there are other non-time critical projects I could do if I can work. I am not sure if I can work from home, which might be better than trying to make myself presentable for the office, and I want to avoid catching anything while undergoing chemo. As you mentioned @Kiwi Angel I might need to work for a sense of normality through all this.@AllyJay - I have thought about meeting with my boss to ask about whether I could have an arrangement where I take leave and come back if I can. It is possible from our previous conversations that he may be open to that.

     I am thinking of alternatives as well - like self study, art or craft or something not too demanding. It could be a good opportunity to do something different.

    My GP has been fantastic. She has a strong focus on overall mental as well as physical health and has raised that while I am coping well at the moment, this could change down the track and and I should see someone about it if I need to. What my GP said was very quite similar to Dr Carrie Lethborg's excellent speech at the Plan B conference (which was the only one I had time to livestream on the day). My GP has suggested that if I have the leave I should take advantage of it as recovery may take longer than I expect. I am aware that my GP has several other patients with BC, including other women of a similar age to me, so she has experience with this. 

    I will also check out the rescue pet thread. This is our new fur baby (hopefully this works). Your fur Angel is beautiful @Kiwi Angel - one of our other cats is a long haired grey that my partner found as a stray kitten. 




  • Kiwi AngelKiwi Angel Sydney, NSWMember Posts: 1,914
    Gorgeous fur baby @Emim ; <3
  • kmakmkmakm MelbourneMember Posts: 7,432
    Look at that FACE! So sweet. K xox
  • SisterSister Adelaide Hills, SAMember Posts: 4,242
    edited August 2018
    Love the moggy.  I'm a potential crazy cat lady.  Most of mine have been rescue cats.
    I think your GP's advice to try to give yourself some time is excellent.  Every one of my doctor's have said the same thing.  While the practicalities of living sometimes preclude it, if you can it is definitely worthwhile.
  • StorkStork Member Posts: 91
    @emim I had a male ginger cat spitting image of your cat Casper was his name I had him for 10 years, I now have 2 rescue cats brother and sister 
    Stork
  • j9kj9k Member Posts: 98
    @Emim - he looks very comfortable.  :)
  • arpiearpie Mid North Coast, NSWMember Posts: 2,936
    @Emim  - all the best for your ongoing treatment - it sounds like you have a pretty good handle on it!   What a gorgeous kitty cat .... great for cuddles.

    Yes, getting it 'done' immediately can often have it's own 'unexpected' costs.  I started a thread a while back about 'gaps' - as I also have been a bit 'stung' by different procedures, tho it was 'sort of' explained to me (even tho paying top private Medical Benefits ... including my pathology costs, FFS!)    
    https://onlinenetwork.bcna.org.au/discussion/18935/no-gap-providers-in-each-state-who-doesnt-charge-out-of-pocket-expenses#latest

    I saw in one of the weekend papers that an APP may be available to search out surgeons in Australia who DON'T charge above the 'gap' - I'll see if I can find it again.

    If you are able to take off as much time from work as you can - that will be a bonus for you - and reduce stress.  Sadly,  It doesn't take much to add stress to an already stressful situation!  :(  I was lucky & skipped the Chemo side of things - I had the Breast Conserving surgery (incorporating reconstruction of the tumour area) and then had 4 weeks daily radiation & am now on hormone tablets for 5 years.  

    Like you, I had a terrific GP (but sadly, she has now relocated to Victoria!  :(  So I have to now decide on a replacement.)   She was wonderful & helped keep me sane!

    Just keep doing what you love doing, so long as you are up to it .....  tell us about it, so we can enjoy it thru you.  I love kayak fishing & playing Ukulele .... both keep me quite busy - which I think is part of the plan for helping us thru this shitty course of events!  

    Take care, know that we are here to help you with any query that may enter your head ....

    Take care xxx
  • EmimEmim CanberraMember Posts: 27
    Thanks for the suggestions and thoughts about work. I have been in two minds about it as it has been such a big part of my life.  After a flurry of medical appointments I have a bit of a break now until chemo start next Friday (which I know is not far away at all) and I have felt a bit at a loose end. As you have said @arpie that it may be best not to, to avoid adding stress to an already stressful situation. I had a dream about going back to work and there were all these problems there that I really didn't want to deal with- I think it was my brain's way of telling me not to do it just yet. I now want to use this time before chemo to be kind to myself - to exercise, rest, read and spend time with family and friends while I feel well. 

    @arpie I really wasn't given much information about how much it would all cost and mostly just got bills at the end. My GP and oncologist asked for some scans to be bulk billed, which has helped.  I will check out your discussion. I haven't been given any information about whether I have to pay anything for chemo. This article from July explains that until recently patients in the ACT had to pay, but that it was going to change soon. I will find out for sure. https://www.canberratimes.com.au/politics/act/act-cancer-patients-have-been-slugged-with-an-unfair-fee-until-now-20180626-p4znr8.html

    Thanks @kiwi angel @kmakm @Sister @Stork  @j9k and @arpie ;for your comments about our beautiful kitty Percy. He is such an affectionate, loving boy, and our other really good with him (now). He is very active and full of energy and needs lots of play time which is a good distraction. Getting a new kitten during this difficult time was the best thing we have done. My partner especially adores cats, and it is helping him while he is supporting me. 

    My mum and I are going to go and check out a shop that has headwear for cancer patients later today. I hope I find some things that I like that will help me feel less self conscious if/when I lose my hair. 


  • SisterSister Adelaide Hills, SAMember Posts: 4,242
    I have found scarves the best thing - there are lots of different ways to tie them (look on YouTube) and they look elegant.  I wear a wig when I want to go under the radar ( wig libraries are a cheap option if you don't think you'll wear one all the time).  Otherwise, beanies or bald.
  • AfraserAfraser MelbourneMember Posts: 2,419
    I had a light synthetic wig and found it invaluable but it's a really personal choice. I also worked through chemo (no
    nausea, no fatigue) and while I was pretty open about having bc and treatment, not everyone needed to know and I liked looking normal (I also looked well). It's very variable, do what suits you best in your particular circumstances. 
  • DoodooDoodoo Member Posts: 374
    I started losing hair big time this morning, so going for the big shave this arvo. Yikes!!!!!!!!!!!!!
Sign In or Register to comment.