To have chemo or not :)

Dear BC family

I had a lumpectomy and sentinel node biopsy in September and at my follow up appointment I was so pleased to receive the news that they got all the nasty stuff, with good margins.  Lymph nodes were clear too.  Whoop.  

However as the mass was Grade 3, my consultant sent a biopsy for a Prosignia (think that's right) test.  I saw the Oncologist yesterday.  Apparently scoring is 1-40 no chemo, 41-60 advisory and 61+ definitely chemo. My score came in at 58.   The Oncologist recommends Chemo followed by meds and 3 weeks radiotherapy.  She said there is no 'wrong answer' but wants a yes or no to chemo by Friday.  My understanding is that chemo will only improve my chances of the cancer returning by 3-5%, with 14% chance of returning within 10 years.  No guarantee that, even if I have the chemo, it won't come back.  

Any thoughts and advice would be much appreciated.  

Julia 

  • Hi JPP60, sorry to hear of your diagnosis. Unfortunately no-one can guarantee whether you having chemo or not that cancer will reoccur. I had grade 3 idc and was er,pr and her2 positive. I had surgery first x2 op to remove tumour and lymph node and then axillary clearance as 1 sentinel node positive. I then found I had 9 more positive nodes which was unexpected as nothing had shown on ultrasound or physical examination. Chemo was a no brainier for me. It helps to mop up any cells that may have broken off from the main tumour and travelled around my body. I then had radiotherapy next which targeted the areas the tumour and cancer cells were found. Now I’m on targeted treatment every 3 weeks for a year and hormone tablets for 5 years. I wanted to give it my all to help prevent it coming back. No one can tell me if having all the treatments will or won’t prevent it coming back I think it’s pot luck. Yes I could have not had it all done and skipped an element but then I would have been wondering later down the line umm if I had done that would I still be in the same position .

    Its a hard decision to make and it’s a very personal one. Everyone is different how they react to each treatment. Chemo is nowhere nearly as bad as it used to be. It’s not one dose fits all it’s very much catered around your particular cancer. Side effects can be treated with drugs to help. Unfortunately I did loose most of my hair but it has grown back thicker and curler than before. I also had down days during treatment with side effects but these did wear off and I had meds to help.  
    If you click on my name you can read my journey. 

    Wishing you all the best in whichever route you decide.

    Hugs from cuffcake x x x x x

  • Hi Julia

    I was in this position.  5% doesn't sound much does it? I kept thinking if I was told to eat sprouts everyday to reduce my chance of cancer by 5% I wouldn't do it (I don't like sprouts).

    After a lot of discussions with family and breast cancer nurse I decided to have the chemo.

    Part of my reasoning was it may come back and if I hadn't had the chemo I'd be thinking why didn't I just have the chemo last time.  And i would rather have it now whilst im younger.  Of course it may come back even though I've had the chemo that's out of my hands.

    I posted on here asking the same question, one reply came back they'd decided to go for it just in case there was still some of the cancer cells that had been missed.

    I'm having 12 weekly rounds of paclitaxel followed by 4 fortnightly EC.  I have round 7 tomorrow- its not as bad as I thought. 

    If you have any questions fire away.  I had more sleepless nights over this decision than I did over my surgery. 

    xx

  • Thanks so much AuntFlo.  Love the sprout analogy!  I keep swinging one way, then the other, as does my husband. Do I put up with potentially 18+ weeks of sh** with the knowledge that I've done everything I can or do I just get on with the radiotherapy and drugs and accept that I have made that choice and there's no going back.  I almost (almost) wish my score had been 61 then the Oncologist would have made the choice for me as such!  Family and friends are all supportive regardless of my decision but the majority think I should throw everything at it.  The clock is ticking.

  • I ended up having chemo before surgery to shrink the lump, but I was always going to take everything they offered. 5% ay not sound a lot but I thin that is huge when you look at other treatments too.

    I'm n 5 years of hormone therapy now and expect to finish treatment after that but if they offered me something after that due to new research I would take it.

  •   I agree with  I’m normally a less is more kind of gal but where my cancer was concerned I decided I’d only ever go the belt and braces route and throw everything offered at it. I’m only 50 and still want to live a long happy life. 
    When I was first diagnosed early stage (13mm IDC 4mm DCIS lymph node negative) I had wait an extra week after hearing I was high and ER+ PR+ to get my HER2 result which would determine if I’d need chemo.
    It was probably the worst weeks wait I’ve ever had. And when they told me I was HER2 positive on the phone I literally felt sick because I knew it meant chemo and the ground felt like it was falling out from under me. Ironically I got that news a year ago today! And the memory of that moment still feels raw today. 
    But a year on I can safely say if I had to choose I’d definitely still opt for chemo. Like  says (we’re also friends outside this forum now) for me I just didn’t like to think I wasn’t giving myself the best possible outcome. I had to choose if I wanted a radiotherapy boost because if my age (10 sessions instead of 5) and I took that too. 
    it’s never easy to make such decisions, I wish you all the best. 

    Have a read of my profile and friend request me if you like x 
    Heart

  • I had successful lumpectomy last November and results came back grade 3 no lymph. Additional oncotype test came back with score of 29 so as 30 and above was Def chemo husband and I decided to go for chemo. A shock as we had expected just radiotherapy but we felt I had to do everything possible to reduce risk of recurrence.. fortunately it wasn't as tough as we expected. 

  • Hi cuffcake 2000

    reading your story is identical to mine .i have another op this Monday 13th to do full clearance of the lymph noads as my previous op last month for breast reconstruction and 3 lymph noades biopsies showed they needed to operate further .

    can I ask you how long after your operation did you start chemo and how many rounds did you have as I know I have this to come .

    hope all is well with you and you didn’t mind me Asking x

  • I haven't started chemo yet and still haven't decided whether to or not - hence my chats on the forum!  I wish you well with your operation and any further treatment. x

  • Hi, I am in the same position. Initially told as it was caught early I wouldn’t need chemo. Had lumpectomy for a 22mm tumour. Lymph nodes clear. But they then told me tumour was grade 3 aggressive. It was sent for OncoDx type.. They told me only 20% of people in my category benefited from chemo. If my score was over 26 I would need chemo. My score was 56. They showed me my results and the final result was ‘high’ meaning I would get benefit from chemo. Tbf as soon as I was told it was aggressive I kind of knew chemo was on the horizon. Going through all the possible side effects is daunting. Cancer may kill you, but chemo may kill you. It’s a rubbish choice but I am going to trust the doctors. The OncoDX test is not cheap. Chemo is not cheap. I have to trust they are doing this with my best interests at heart. 

  • Hi Lhasa18, ask away I don’t mind at all.  I had my second op 3rd November and then started my first cycle of chemo 6th December so a month later. It was to give the op site time to heal. I had 4 cycles of EC and 4 cycles of Docetaxel. As I’m HER2 positive too I have 3 weekly Phesgo injections to which will finish end of January 2024.

    Wishing you all the best for your next op. 
    Hugs from cuffcake x x x x x