newly diagnosed

jomareejomaree Launceston TasmaniaMember Posts: 12
New to this so not sure if i'm in the right place. Diagnosed in October, have had 2 surgeries. Lumpectomy and sentinel node biopsy and 2 weeks ago axiliary dissection. Have seen the medical oncologist and know I will have hormone therapy as oestrogen + also radiation therapy still waiting for appointment. Oncologist says my choice to have Chemo but not recommended as only 1% advantage for survival. My head says listen and follow medical advise but my gut is saying go for it, need to give an answer by next week. So confused.

Comments

  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 3,087
    HI @jomaree
    sorry you have need to join the forum. It is very normal to feel confused, angry and sad all mixed up together when we get a BC diagnosis. 
    I am sure others will come and post replies to your post soon. 


    I will put a list up for you here. 
    I always say go with your gut.... 

    I am now 6 years since diagnosis and cancer free. 

    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


  • kezmusckezmusc Member Posts: 1,016
    edited December 2018
    Hi @jomaree,

    Welcome lovely.  You are definitely in the right place for support and fantastic advice.  It is very confusing at the beginning, so many things to decide and a whole other language to get your head around.
    Most of us call it the rollercoaster as it is the best word to describe your feelings and emotions.  
    I too had lumpectomy,axillary clearance, rads and I did do chemo as the rotten thing was already through 5 of the lymph nodes and surrounding tissue.  The increased benefit for me was 11%.  Even then I ummed and aahhed about it.

     Chemo is a hard slog. It is very hard on your body.  There are side effects that vary from person to person and some hang around for years.

    Be guided by your team.  They see enough of this to know whether or not the benefits of the treatment are worth the risk.

    All the best lovely.

    xoxoxo
  • jomareejomaree Launceston TasmaniaMember Posts: 12
    thankyou just need some guidance from those who have gone before me, your input will help me make my decision xx
  • primekprimek Broken HillMember Posts: 4,766
    Hi there. Looks like you have duplicate posts. I have commented on the other one. 
  • arpiearpie Mid North Coast, NSWMember Posts: 2,270
    It's a tricky one @jomaree  .....

    I was lucky & not recommended chemo at all as no cancer cells were found in my lymph nodes (I had sentinel node test with 2 removed) ..... tho I did have 4 weeks radiation & am now on Hormone tablets. (I only get the 1% benefit from taking them - to reduce/prevent the production of oestrogen in my body as my tumours were fed by oestrogen.)  

    Can we assume that your nodes were clear (no cancer cells identified in them in your pathology report?)   Whilst not a guarantee of a recurrence - it is considered a bonus to have them 'clear'.

    So I am taking the hormone tablets - altho the original ones prescribed fro me gave me nasty side effects.  After 6 weeks, I changed to Exemestane (which suits me much better.) 

    All the best for your treatment - just look after YOU at this point in time .... DON'T rely on Dr Google for your answers on whether to have chemo or not - speak with your Oncologist and GP and other health professionals (your surgeon & Breast Care Nurse) for the most reliable information.  Then make the decision that you are comfortable with.

    Take care & I hope you have lots of family & friends to surround you with love & laughter over Xmas & New Year xx

  • jomareejomaree Launceston TasmaniaMember Posts: 12
    sentinel node was positive for cancer 17 lymph nodes taken and clear. My nan had breast cancer and have bad history for other cancers in the family both sides. my family not very helpful just say it my choice

  • iserbrowniserbrown Regional VictoriaMember Posts: 3,258
    edited December 2018
    . Have seen the medical oncologist and know I will have hormone therapy as oestrogen + also radiation therapy still waiting for appointment. Oncologist says my choice to have Chemo but not recommended as only 1% advantage for survival. 

    @jomaree
    For me it was 3% and I  asked what else was on offer. Onc had said if it had been 8% he would've convinced me to have chemo.  Trust in yourself 
    Hormone treatment is a long drawn out affair.
    Have you seen the booklet from BCNA?

    https://www.bcna.org.au/understanding-breast-cancer/treatment/hormone-therapy/

    Take care
  • SisterSister Adelaide Hills, SAMember Posts: 3,653
    Welcome @jomaree I can't remember now what my stats were that meant chemo was advised - I think I had forgotten by the time I left the onc's rooms - so I don't know what I would have chosen.  Originally, it looked as if I would not require chemo as they thought the tumour was smaller and that it had not started moving but the first path reports showed that it had moved into 3 nodes.  In the end, if it is being offered, it is your choice but do find out what both the short and long-term advantages and disadvantages are.  It is a long road.  I did it because my onc strongly advised it and I didn't want to look back and think "what if".
  • Brenda5Brenda5 Burrum Heads, QldMember Posts: 2,197
    I had a single mastectomy (my choice) but it turned out for the best as there were dubious cells on the other side of my breast they discovered on lab testing. My sentinel node was involved and I ended up with axillary clearance but no further cancer found. My oncologist said it was a definite given for me to have chemo because my lump had been so aggressively growing. I did not require radiation as everything to radiate had been surgically removed already.
  • kmakmkmakm MelbourneMember Posts: 6,449
    Hi @jomaree. If you have the financial wherewithal, you could ask your oncologist about doing a genomic test. This looks specifically at your tumour to see if chemotherapy would have a curative effect if some cells have escaped and are looking to grow elsewhere in your body. On the surface of it, my cancer did not warrant chemo, but given the strong family history and my curcumstances, my oncologist thought it would be worth it. I did the test, it indicated chemo would be of benefit, so I went ahead and did it. Not fun, but no regrets. I never wanted to have a 'what if'. This time last year I was waiting for the results. All the best with your decision. K xox
  • Shellshocked2018_Shellshocked2018_ Fleurieu Peninsula , SAMember Posts: 102
    Hi Jomaree, welcome to this forum where you will receive a lot of information and peoples experiences.
    Its your choice if you decide to have Chemotherapy, I’m with going with your gut feeling and what kmakm said, I never want to have a ‘what if’.
    Good luck, I’m sure you will make the right decision for you.
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