37 year old - just diagnosed

ninicaninica Member Posts: 2
edited February 14 in Newly diagnosed
Hi ladies,
I have been diagnosed with early stage, grade 2, DCIS in early January (ER+, PR+ and HER2 negative). Since then I had lumpectomy with clear margins and sentinel node biopsy. Sentinel node biopsy found a tiny speck of cancer cell (less that 0.5 mm) and oncologist is pretty sure it did not spread anywhere else and they call it micro metastasis. I have done CT scan and bone scan just in case which are all clear. I was expecting radiotherapy and hormone replacement therapy as a treatment as mentioned by my surgeon. I was totally shocked to find out that oncologist is recommending invasive chemotherapy as a treatment (i believe it is called AC chemo). I am totally scared and petrified and can not come to terms with chemo. Just thinking about it makes me go into panic mode. I have seen another oncologist for a second opinion and he also suggests chemo as a treatment for me purely based on my age and the other indicators which are kind of on border line. I have just ordered Prosigna test as recommended by oncologist. Just waiting for results it's making me so nervous. I have two kids aged 8 and 4 and don't know how am I going to go through chemo if I have to (i know it is totally up to me).
Wondering is there any ladies with similar age and in similar position and what is your opinion on chemo? Like I mentioned I am totally petrified of chemo and how would my body handle it. I am very skinny person and don't believe I would handle chemo good. Even breast care nurse told me I am too skinny for chemo and to try to eat up in case I decide to do it.
Any experiences shared would be greatly appreciated.

Comments

  • AfraserAfraser MelbourneMember Posts: 2,727
    Breathe! I am not your age and wasn’t very skinny when I had chemo (not quite sure where your bc nurse gets her information) but if two oncologists are recommending chemo, that recommendation deserves a hard, clear think! Try writing down what scares you - so you can analyse it rather than react. Chemo can be very unpleasant, it can also be quite manageable. Reactions vary wildly and very few are predictable (fat people don’t ‘do better’ than skinny people). If you find the side effects intolerable, you can stop! I did four rounds of A/C - yes I lost my hair, but cold cap has come a long way in the meantime and you may not. My only other side effect was certainly age related (30 years more than you). I worked through six months of chemo and no, I am not some sort of workaholic martyr. I was fine. 
    it is always the patient’s decision, but some identification of your biggest fears and what may be done about them may be useful at this juncture. Many of us have worried long and miserably about something that never actually happened while having treatment, we know that feeling. The aim is always the same however - a long life, cancer free. Best wishes.  


  • arpiearpie Mid North Coast, NSWMember Posts: 3,532
    So sorry to see you join 'the club', @ninica - but you'll get a wealth of support and tips here, from those who've gone before you.

    I was lucky & dodged the chemo bullet & went straight to Rads & Tabs - but my husband had one node affected (out of 50 tested) with his stomach cancer - and altho he didn't 'want to' - he did decide to go with chemo, as it is to mop up those 'randoms' that may have snuck thru the net.  :(   Both your opinions have suggested chemo - not everyone gets really crook - quite a few here have continued working thru their treatments - if you go down that road, fingers crossed, it may be you.

    There is a 'Young Women' group here that you may like to join, to discuss issues with in private (only group members can see the posts.) . You can raise any issue you like with them.  Clicking on it will show BCNA, @InkPetal and @jane84 as contacts for joining ...

    https://onlinenetwork.bcna.org.au/group/10-young-women

    All the best with your decision making xxx
  • Dory65Dory65 Member Posts: 54
    Hi ninica,
    I'm glad you are doing the Prosigna genomic test. I did the Oncotype DX, which is similar. One way or another, the results will give you more valuable information to help you and your doctors make a plan which is best for you. Good luck. x
  • CRMCRM MelbourneMember Posts: 64
    edited February 14
    Hi @ninica I was diagnosed last year at age 32.  Stage 1 (15mm tumor), Grade 2, ER+ PR+ HER2-.  I had the lumpectomy and radiation and am now taking Tamoxifen and having Zoladex injections for the next 2-5 years.  Chemo was never suggested to me by my medical team.  From my perspective I would ask if your medical team are suggesting chemo just based on your age or are they suggesting it because there was a small trace of cancer in the lymph node or perhaps your DCIS is of a significant size.  I suspect if I had had any trace of cancer in my lymph nodes then my treatment plan may have included chemo.  It's a tough decision to make and I hope your team are able to provide you with the answers you need before you decide x  
  • primekprimek Broken HillMember Posts: 5,295
    I was 51 at diagnosis. Mine was Her2 positive as well as Estrogen . Another lady I met 15 years older...same size tumor  had a different regime from me. I had ACT then herceptin...purely because of my age. My nodes were negative. 
    They do look at long term survival rates with treatment. The first 5 years all much the same. The next 5 years there is a bit of difference but by 15 years it really does have much varied stats with survival rates. This is significant when you are 37.

    ACT is hard but doable. You are stronger than you think. I was a mess the day my chemo started. Cried in the shower beforehand. But I put my smile on and in I went. I didn't want to have any regrets in 2 years of not giving it my best shot of being cured. 

    You can do it. Many if us here have and thought we couldn't also. X

  • youngdogmumyoungdogmum Gold Coast Member Posts: 233
    Hi, I was 27 at diagnosis last year and further along than you so I scored all four; surgery chemo rads and hormone therapy. 
    I’m fairly slim, I started at 65kg and finished treatment at 61kg. Everyone is different your appetite may or may not be affected, mine was and I was pretty selective at what I wanted to eat and could stomach, but they also give you steroid injections which are notorious for increasing appetite and gaining weight. I’m a nurse and have seen this many times, the “steroid puff” assoc with chemo. I didn’t get any of it but I wasn’t wasting away after chemo. You can increase calories into whatever you can stomach quite easy these days.
    best wishes. 
  • kezmusckezmusc Member Posts: 1,382
    edited February 15
    Hi @ninica,

    Welcome lovely.  Chemo is the one with the big bad reputation on this trip. .  I was a little older than you (45) grade 2 stage 2 IDC and DCIS 5/24 nodes positive. strongly  ER/PR positive.
    As there was nodes involved chemo was a no brainer, it just had to be done no matter how much I didn't want to do it.

    I had the AC-T  as well, it's a pretty standard cocktail for BC. Your brain will conjure up every awful thing it can.  Especially after the bloody great long list of possible side effects. Remember, it does not mean you will get them all or even many of them.  A lot of us get through not too disgustingly at all. You get into a bit of a routine once you get going and will be able to pick the bad days and plan stuff around them.
    As far as being thin goes, the steroids sometimes sort that out.  I put on 5 kgs over the 6 months, goodness knows how as food tastes like crap.  Luckily chocolate and wine did not. Maybe that's what did it. :)
    I managed to work part time, never caught any bugs, kept my hair with the cold cap, ran my farm, renovated my dining room, went to horse shows and partied in the bar with the cowboys.  Anything to stay distracted and not think too much. There were some days that were crap along the way, but there were a lot more that weren't.
    It's just that you don't know until you get going.  That's the thing nobody can tell you.
    Take lots of photos of anything normal you do along the way with family and friends.  Then when you look back this time of your life won't be just all about the cancer.

    All the best sweet.  You got this and we're all here for support along the way if you need us.
    xoxoxoxoxox



     
  • primekprimek Broken HillMember Posts: 5,295
    Oh and in regards to being too skinny for chemo. This is irrelevant. Chemo doses are based on your weight. A significant number of women actually gain weight on chemo as steroids are used to assist with nausea as well as many other choices for controlling nausea. 
    My niece was always very thin and had no particular issue with her chemo treatment at all.
    I myself managed to gain 28kg on chemo, even though I felt a little squarmy a lot I'd the time the 1st week if each cycle. Most people don't gain that much, I was just a bit special. 
  • JodieRazzJodieRazz Melbourne Member Posts: 1 New Member
    Hi @ninica.. I too was diagnosed with breast cancer in early January and my cancer journey and prognosis is mirror image to yours, the only difference is that I’m older than you. 
    My surgeon and oncologists have suggested that I wont need chemo so it’s scary to hear that two oncologists have suggested you should have it. Maybe I should get a second opinion also?  I get the results of my Prosigna test tomorrow. I would love to know how you go when you get your test back and what you choose to do moving forward. Good luck! 
  • Shellshocked2018_Shellshocked2018_ Fleurieu Peninsula , SAMember Posts: 185
    Hi ninica , welcome to this forum full of information, and understanding on what you are going through and how you’re feeling. stay positive, you can do this...........
    Chemotherapy,most of us have been there and you will see that depending on your dose, how it will affect you. But one thing you will notice is that we all got through it, for one I put on around 6 kgs during chemotherapy from all the drugs, never lost .
    Side affects affect everyone differently, some of us were able to work and some of us couldn’t.

    I suppose it comes down to you in the end and no one can make that decision for you. 
    One thing that I had in my mind was I’m going to throw everything possible at this hideous disease and live with no regrets, that I have done as much as I could to beat this.

    Your oncologist and team of specialists would of discussed your case and made a decision on what facts they have in front of them, I listened to what my specialists had to say as hey they deal with this everyday and see the results, me I had no idea! But at the end of the day it’s your decision.
    Chemotherapy, yes it has side affects and we all deal with it differently, I just went with the flow, and there is so much medication available to assist with the side affects

    Let us  know how you go and what you decide, either way we are all her for you .
    Be kind to yourself, sending gentle hugs your way.
  • jintiejintie MelbourneMember Posts: 93
    My scenario is similar to yours, except I was 3 years older than you when diagnosed and my cancer was grade 3, multifocal with lymph node involvement.  I said to the BC nurse that I was worried about putting on weight.  She told me not to worry and said I’d probably lose weight.  She was wrong - I put on 8 kilos (most of this weight gain was during taxol and I put on 500gms a week over 12 weeks).
    Everyone reacts differently.  We all got through it.  I think being younger has its advantages.  
  • ninicaninica Member Posts: 2
    Thank you everyone for your answers and for being so encouraging. I am still waiting for the results of my Prosigna test, it should be ready in about week time. Still nervous as hell about it. Most of you ladies say chemo is doable so I guess I will be able to manage if I have to go through it. @youngdogmum I am even slimmer than you, I am 58kg and have been like that forever plus pretty tall as well, whatever I do I can not put weight hence I am even more worried how to go through chemo if needed. I have also lost 1kg since I found my diagnosis, from stress I suppose as every time I am stressed it affects my appetite.
  • AfraserAfraser MelbourneMember Posts: 2,727
    Just to reiterate @primek’s point, your chemo dose is calculated on your weight and height. If your weight alters during treatment, your dose will be adjusted accordingly. I don’t have any stats but it certainly appears that more people put weight on during chemo than lose it (I did lose weight and could afford to do so).  As everyone says, the first few weeks can be very stressful but things often improve when you and your medical team have agreed on a course of action and you actually start treatment. Best wishes. 
  • jintiejintie MelbourneMember Posts: 93
    Yep - you get weighed in before every chemo treatment.  They will alter based on your weight and height.
  • mtansyzmtansyz Member Posts: 10
    Hello,
    I was 35 when diagnosed in 2018. I was diagnosed while pregnant, and had my first 3 months of chemo while pregnant, then had baby and went on to have a different sort of chemo for another three months. I found chemo challenging...but somehow managed to get through it...one week at a time. We have two other children, who were 5 and 3 at the time...I let them cut / shave off all my hair before it started falling out...(which they enjoyed WAY to much ;)
    I get what you are saying, chemo is scary...and not a lot of fun. 
    At the end of the day, its your body and your decision.
    My husband took 7 months unpaid leave from work as soon as the baby was born, and he was able to access a government carers pension of some kind...so he become the primary carer for all three kids, while I was recovering from surgery, going through second lot of chemo / radiotherapy. (I'm not sure if you have a partner, but having someone who can step in and care for kids when are feeling a bit rough from chemo can be really helpful!)
    I wish you all the best, whatever your decision!!! 
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