Newly diagnosed at age 34

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Comments

  • Ro10
    Ro10 Member Posts: 59 ✭
    Thanks for all your replies. @Ne I actually saw some photos of you after your treatment and I noticed your pretty pink lip gloss in the photos which inspired me to go and get some!
    Im facing a dilemma at the moment deciding whether I should actually have chemo or not. I saw my oncologist yesterday and we discussed whether chemo is right for my situation. I have been told that having chemo will only increase my chance of survival by about 2% and as my chance of survival currently stands at over 90% without any further treatment, I'm not sure whether the risks of chemo outweigh the benefits. My oncologist has basically said that its my decision and he can't tell me which way to go and has also said that in my situation, the chemo could do more harm than good! But there's also the possibility that it could save my life! So I have to decide whether I want to accept the risks of having chemo or accept the risk of not doing it and my cancer spreading or coming back. For those of you that have been through chemo, would you have still done it if it was only going to increase your survival chance by 2%?
  • Emma T
    Emma T Member Posts: 42 ✭
    Hello lovely @Ro10, thank you for sharing your story. I'm sorry to have met you through these channels (it's the 'club' you don't really want to join but I'm so glad we have met!) and I want you to know that you're definitely not alone.  BCNA and all of the amazing women on here are incredibly supportive and have some fantastic advice and guidance which greatly helped when I was diagnosed. I was also 34 years old when I was diagnosed and my daughters were aged 2 and 5. I am very happy and excited to let you know that I just celebrated 5 years cancer free. I hope this gives you some hope :) 
    I kept a blog of my journey and am happy to share this with you in case you would like to read it but I completely understand that reading a blog isn't everyone's cup of tea ;)  http://emmataylorsjourney.blogspot.com.au/2011/06/not-what-i-was-expecting.html
    In relation to head scarves, I found a fantastic company located over in the USA and they ship to Australia (hallelujah!!). Here is a link for you to check out - https://www.headcovers.com/scarves/
    I ordered lots of bright and fun scarves which help me feel young and feminine.
    I hope some of this information helps. 
    Take care,
    Emma
    x

  • iserbrown
    iserbrown Member Posts: 5,731 ✭



    Hi I noticed your comment about the 2%.  My Oncologist had offered Chemo with only 3%.  I asked what else was on offer and we settled on monthly Zoladex injections for 2 years and tamoxifen tablets daily for 10 years.  You need to ask and understand your alternatives before deciding if Chemo is correct for you.
    Good luck and take care xx
  • melclarity
    melclarity Member Posts: 3,528 ✭
    Hi There,

    There are so many factors that decide Chemo or not, so your diagnosis is paramount, as in ER+ Her-or+, also whether you had DCIS or IDC and what stage and grade it was? also family history. When I was diagnosed 2011 with DCIS, I only had my Mum diagnosed same age at 40 thats it. My Surgeon still ordered very aggressive treatment, which was lumpectomy, radiation and tamoxifen for 5yrs, BUT I had a recurrence inspite of all that in my scar tissue and inspite of being checked yearly, in that time I had a Stage 2 Grade 3 aggressive IDC Breast Cancer ER+ only. The Oncologists rule of thumb he said was he suggests chemo when a tumor is Grade 3. But there are the other factors. Unfortunately I had to have another major lumpectomy, lymph nodes removed which were clear and 4.5 months of chemo and now on Arimidex. They also made me do the Gene Testing eventhough it was unlikely to be positive due to recurrence there was a chance. Thankfully negative, but am wondering if you should be having that??? and even through all this, The 2 Genetic Doctors I saw this week and Breast Surgeon and Oncologist ALL now want a mastectomy rather than gamble with another recurrence. Though thats just it isnt it?? a gamble?? because I dont know if it will or wont come back and thats the tough part.

    So I urge you to look at your full diagnosis which will give you more of an indication of where you are and how to proceed.
    Hugs
    Melinda xo
  • Ro10
    Ro10 Member Posts: 59 ✭
    My tumour was only 11mm and was a IDC, ER+, PGR+, HER2-. It's a grade 2, stage 1B. I had a lumpectomy and 2 nodes removed, one of which had micrometastases. I have been told I should have 6 months of chemo, 6 weeks of radiation and 10 years of tamoxifen. They are only suggesting chemo as there were early signs of cancer in one of the lymph nodes and they can't rule out the possibility that it has spread. I think also given my young age (34) they think chemo gives me a better chance of survival. I am looking at genetic testing aswell. Apparently there is a 6 month wait for genetic testing through the public system on the Sunshine Coast QLD so I am going to go private which is about $400 and a 3 week wait. My mum had BC at 34 and her sister had it at 65 but there is no other family history and no sign of BC on my dads side (my dads mum lived to 100 with no major health problems so I hope I've inherited some of her genes!)
    I think the thing I am most nervous about is the serious life threatening side effects from chemo. I know they aren't common but to be honest, I'm absolutely terrified about doing chemo and that something bad is going to happen. It probably sounds totally irrational but I can't seem to shake that feeling. I am otherwise healthy and have no other health issues and don't take any other medication so I'm hoping that will count in my favour!
  • SoldierCrab
    SoldierCrab Member Posts: 3,429 ✭
    Ro10 do you have a family history of prostate cancer in either side of the family it can be from the same gene..... ? if you do then you should be eligible for it under medicare

  • Ne
    Ne Member Posts: 336 ✭
    Wow, that is a big decision to have to make.  I was 39 when diagnosed with 3 tumors (biggest one 3cm) hormone positive, Her2 negative.  No family history but my onc kept saying that with diagnosis at such a young age, they always recommend gene testing.  I had a mastectomy cause two lymph nodes were involved.  Turned out I was BRCA2 positive so decided to have a prophylactic hysterectomy and mastectomy of remaining breast.  I can never tell you what to do, but you are young and you want the best possible chance of survival. In my case If I wasn't offered a mastectomy I would have demanded one because I didn't ever want to have to deal with bc again ever and being so young with such an aggresive cancer as mine, I just wanted to my 120% sure I was doing everything possible to add to my chance of survival.  All the best with your treatment and the decision you make.  We are all here to support you as best we can x
  • melclarity
    melclarity Member Posts: 3,528 ✭
    Ok, so based on your diagnosis being Grade 2, Stage 1, Chemo is definitely not a given, so there are other factors as you say, I'm thinking the Her2- has something to do with it also in terms of treatment. The gene test cost me $800 because I didnt have a strong enough history! Ridiculous but have had BC twice!!!! So I think it would be worthwhile for you to do absolutely moving forward in terms of knowing treatment. I'd get your Surgeon to do an urgent referral thats what mine did, though took months to get in here in Melbourne. I had granddads on both sides with Prostate cancer and I didnt qualify Scorpion Queen. uuugh

    I also felt the same way about Chemo as you do!! I can say, I dont believe anything will happen to you at all, like everything there are risks! I was so against it, but I did it in the end and am 9 months post chemo...whilst very hard and I was so ill through it, I dont question If I could have done more you know? and I got through it!!! 

    My lymph nodes were clear, so as you say because there was something detected in yours is another reason they suggest. Its a tough decision and only one you can make as to what sits with you, hugs Melinda xo
  • Ne
    Ne Member Posts: 336 ✭
    @melclarity Hi Mel, If you dont mind me asking, so with your first diagnosis did you not have chemo then?
  • Ro10
    Ro10 Member Posts: 59 ✭
    I don't have a family history of prostate or ovarian cancer. My surgeon was saying that colon cancer can be in this group aswell. My dad was diagnosed with bowel cancer 5 years ago but is now cancer free after only needing surgery. He got some genetic testing done for bowel cancer and it came back negative. He thinks I would probably test negative for the BRCA gene as I am only the third person in our family with BC and he thinks maybe more people in our family would have had BC for there to be a genetic mutation. But who knows, maybe I do have it. I have already discussed the possibility of a double mastectomy with my surgeon if I do test positive for the gene and we have also talked about removing my ovaries aswell. And apparently I qualify for free testing due to my family history but there is a 6 month wait so I could fast track it through the private system and pay $400. Aarg! So much to think about at 34 years old. I must say, I never thought I would be facing this so young!
  • melclarity
    melclarity Member Posts: 3,528 ✭
    @Ne - No I had rads, lumpectomy and tamoxifen, I had DCIS so Chemo wasnt mentioned at all or necessary, treatment I had was aggressive for DCIS, my Surgeon is one of the elite in Melbourne and my recurrence left him gobsmacked!

    @Ro10 - Yes I think you are similar to me though Im 48yo, I have a cousin who had bowel cancer, 2 grandads prostate, my Mum Breast Cancer and an Aunt with Pancreatic. Thats it. I think you'd probs be negative too! There have been some ladies on here who tested positive though no family history so it is interesting. I agree you are sooo young!! I started mammos at 38 and glad as well twice now uuugh. Funny you qualified but I didnt mine cost $800 and no rebates private or otherwise. Strange! and yes your Surgeon can fast track it, I think its worth doing as same as you, I knew if positive double mastectomy and ovaries removed. Now I know Im negative, I will only choose a single mastectomy and thats it!! 

    So keep talking, maybe a 2nd opinion on your diagnosis even if youre undecided. 
  • Debza
    Debza Member Posts: 27 ✭
    Ro10 I hear you,we all do and I too had identical diagnosis.I am 20 yrs older but my mum was also diagnosed young 39.Had gene tests not carrying gene.
    I have just finished chemo half way then Radio and tabs for yrs.
    I also felt shatter e d when my shoulder length hair(red) was falling out.Lots of groovy ways to wear a scarce and look great,shaved was empowering,as it as inevitable to come out so just got on with it.As some girls have mentioned different sites are in all capital cities.there's a free wig service in Melbourne and Think Pink offer different courses and in rural areas too.Breacan Cancer Council etc.Please don't despair it's only temporary and a process.Let's us now how things are going.Remember knowledge is power,take your time ,breathe and feel supported.debza

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