Newly diagnosed - how to cope?

SoozSooz Epping, NSWMember Posts: 18
edited January 7 in Newly diagnosed

Hi everyone, there are so many inspiring stories on here and lots of support. I know that many on here have it way worse than me but I just wanted to reach out and say hi and get some advice on coping with what’s ahead. This is my story - I was diagnosed with stage 2 at the start of December having found a lump randomly while doing the ironing! I’m not even sure what made me go there – maybe an add on the telly – who knows. I'm 44, have 2 girls aged 3 and 8 and am (or at least was) happy and healthy. I have previously lost a kidney to cancer at age 29 and am 15 years out from that so was really hoping that would be it for me with cancer. I also work in cancer research so know a lot about kidney cancer and melanoma but not a whole lot about breast cancer but on the plus side it also means I have access to surgeons and medical oncologists in the building where I work. I've had a lumpectomy and was originally told that due to the size and no apparent spread to the axilla I might just have a lumpectomy followed by radiotherapy and tamoxifen – no mastectomy and no chemo.  After the surgery though I was told there were 2 small satellites and some isolated tumour cells in an internal mammary node so that even though I still remained stage 2 they said because of my age the treatment may be a bit more aggressive so chemo was on the table aswell as menopause inducing drugs and aromatase inhibitors. I was told that if I had the money I could do the Oncotype test to determine whether chemo would be of benefit or not. That was one of the hardest consults I’ve had to go through. I was in total shock. I saw a medical oncologist yesterday and we went through the works. His treatment suggestions without the Oncotype were 4 cycles of chemo, followed by radiotherapy, then 10 years of tamoxifen. Otherwise they can induce menopause and I go on aromatase inhibitors for 10 years. With the Oncotype we may get an answer as to whether chemo is of benefit or not and the chances of recurrence.  I have a real issue with becoming menopausal at my age with a 3 year old. They are 2 things that were never meant to co-exist! I don’t want to go through chemo unless I need to so we decided to do the Oncotype and use the money we’ve been saving for a car. At least we can know we are making the right decision. I am weirdly ok with the cancer part as I have been there before and survived and feel lucky the breast cancer has been found so early. I can put the chemo out of my mind for now as it is not a certainty.  What I am struggling with is basically the whole thing  but specifically the thought of 10 years of drug treatment. Again I know things could be a lot worse but that’s what I’m finding hard to deal with. I was thinking of going to a councillor to help me deal with it and most of all accept it. How have you ladies got your head around this? I am into exercise and meditation and I need to work on making sure I plan this stuff into my day everyday but it’s hard with the 2 kids but will give it a red hot go as you Aussies say! I’m from Ireland and have lived here 19 years and I am very grateful that the health system here is so good. It’s already saved my life twice. Thanks for listening.

Comments

  • kezmusckezmusc Member Posts: 1,136
    Hi @Sooz.  

    Welcome to the forum.  You will always find lots of great advice and support on here.  Nobody can quite no how you feel unless you've been there.

    Yes, out health system is very good here and the breast cancer train is a very well oiled machine thankfully.  I went public for the whole lot and couldn't fault it.

    I was 45 at time of diagnosis and the same as you found it totally by accident.  I found mine in the lymphnode so we already new it had spread and chemo was a given.

    So end up story was stage2 grade2. ER & PR + lumpectomy, axilliary clearance with 5/24 nodes positive. 6 months chemo, 30 rads, 10 yrs Tamoxifen.  Hmmmm

    Chemo ,while no walk in the park, is generally not as horrible as out brains conjure up and there are plenty of good drugs these days to combat any side effects.  Rads was easy for me with almost no problems.  

    Personally I found distraction was the best method to get through so I stayed super busy the whole way  and tried not to allow a lot of time for thinking. 

    Being thrown into menopause when your body wasn't even thinking about it does suck, I won't lie and for me has been the hardest part. The chemo will do that initially and then the HT keeps you there........if you want. 

    The decision for the hormone therapy is yours and yours alone.  They should be able to give you a % of extra coverage with or without the HT then it will be up to you. 

    If you search Tamoxifen, letrozole or any of the other drug names on here you will find a lot of discussions on the subject.

    Stay in touch lovely.  All the best

    xoxoxox
  • TonyaMTonyaM Member Posts: 2,586
    Hi Sooz, so sorry to hear you have this crap bc journey ahead of you.It doesn’t seem fair for life to dish you out another dose of cancer! I was 47yr when I got a similar bc diagnosis(2003)- found the lump in the shower,stage 2, lumpectomy +full node clearance(all 18 clear!), radiation,NO chemo and Tamoxifen.My youngest daughter was doing her HSC so any age is a bad age. I didn’t follow through with Tamoxifen as it sooooo didn’t agree with me.Anyway,7yrs later it came back in the same breast so I had to have a mastectomy and chemo and then Tamoxifen.I took T for 4yrs as it was beginning to impact on my health.It’s now 8yrs later and I’m fine. It’s very overwhelming when treatment is laid out ahead for you. 10yrs of Tamoxifen feels like a lifetime but it maybe helpful to just take a bit at a time.My attitude was ‘take it and see how I go’.Some women have no trouble with Tamoxifen- we are all different. Nothing gets set in concrete and new info is always coming to light. Ultimately,it’s your body and your decision and it’s not one size fits all.Good luck with the onco test and I hope you avoid chemo.A psychologist can be helpful for sure and if you need a bc support group,I run one in the Hills area of Sydney and you’d be most welcome. 
  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 3,183

    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. 

    How to post on the main forum – use this link to get to the main forum and begin a new post. https://onlinenetwork.bcna.org.au/post/discussion

     

    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. 

    My Journey Online Tool resources
    https://myjourney.org.au/hp/step5

    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

     



  • arpiearpie Mid North Coast, NSWMember Posts: 2,672
    So sorry to see you here, @Sooz  -  mine was caught early, so I didn't have to do the chemo - just surgery, rads & tabs.  You have a lot of big decisions to make - I wish you well with them.   Being fit and healthy will assist in your recovery.  Most of us felt happy, healthy & fit before being diagnosed - so many people will say 'But you don't LOOK ILL' .....

    Take care, thinking of you and your girls as you get your treatment plan

    Yep, keeping busy definitely helped me thru the darkest times (and still does.) ..... Big Hugs coming your way xxxx
  • kmakmkmakm MelbourneMember Posts: 7,039
    Hi @Sooz. I'm sorry you've had to join us here.

    I had two ops, chemo and then a double mastectomy and reconstruction. Then on the 1/6/18 I embarked on 7 - 10 years of hormone therapy. I'm on Letrozole. I'm finding it hard, experiencing a number of side effects, but I've just come off a one month drug holiday that saw the side effects go away. So I've decided to not look at the decade, but at year by year, and after each 12 months I'm going to have a month off. Looking at the whole mountain is too daunting.

    My BS said I don't have a choice, so strongly ER+ was my cancer, and I have a genetic mutation that increases my chances, so I'm throwing the kitchen sink at it. It's not fun, but it's better than looking at the lid so I'm doing it.

    Keep your eyes on the prize, a cancer free life. And you may be one of the lucky ones who have little to no issues on it. Fingers crossed. K xox
  • SoozSooz Epping, NSWMember Posts: 18
    Thanks so much for the support and advice and for sharing your experiences. I really appreciate it. 
  • Tracey2800Tracey2800 Orange NSWMember Posts: 32
    edited January 5
    Hi @Sooz,

    My diagnosis was similar in that I had grade 2 BC, later on found I had one lymph node with a micro amount of cancer cells, and was offered the genetic test to ascertain whether chemo would be a benefit. 

    I’ve chosen a different path and opted for the chemo (I’ve had one round with 3 more to go) and will have a bilateral mastectomy once off chemo. I’ll also have 5+ years of hormone blocking medications. I’m a bit of an all in sort of gal 😆

    The only way I could wrap my head around it was to read reliable and researched material, talk talk talk with my doctor and then spend lots of quiet time reflecting on what I felt was the best for me. Initially I couldn’t make a decision either way but meditating and working out what was blocking me helped immensely. 

    Good luck with your treatment.
    Tracey xx 
  • SoozSooz Epping, NSWMember Posts: 18
    Thanks so much @Tracey2800. I have a lymph node with isolated cells so it's considered node negative thankfully.  I may be the same as you - 4 rounds of chemo. I hope it's not too  bad for you. Bilateral mastectomy -  you really are all in - Ah-mazing courage!  Without the Oncotype test I would do the chemo 100% but I just want to be sure it's the right thing to do. I did a workout just now and feel great - woo hoo almost 4 weeks post surgery but I'll be in agony tomorrow! 

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