Increase in tumour size after Chemo

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Hello I have just joined the group in the hope that someone is having a similar experience/or already been through the same as me and can offer some encouragement.  I was diagnosed with Triple Negative Breast cancer end October 2020.  My treatment plan is two phases of Chemo, followed by a removal of the tumour and then breast saving operation followed by 21 days of radiotherapy.  I finished my 1st phase of Chemo which was 4 x ACdd (Doxorubicine and Cyclosfosamide). I had the MRI scan once this treatment was finished but unfortunately the tumour hasn't shrunk in fact it has doubled in size!  This has really given me a knock as I just didn't expect to hear the bad news I just assumed the chemo would work.  Has anyone else had the same case.  I have now been told the breast will be removed ( possibly both depending on the results of the genetic testing).  I have started the second phase of chemo treatment which is 12 weeks of Paclitaxel.  Of course all my hopes are pinned on this working but its a waiting game and I am finding it hard to handle the not knowing.  

Would love to hear from anyone going through the same ordeal.

  • Hi and a very warm welcome to the online community

    I'm sorry to read about your recent diagnosis and that you've discovered that the tumour is now bigger than it was before you started chemotherapy. I can understand what a worrying time this must be for you and it's natural that you'd want to hear from others in the same position as yourself.

    I had a different type of cancer, but noticed that your post hadn't had any replies yet, so I hope you don't mind me suggesting that you also join and post in the main breast cancer group. You'll find lots of people with TNBC also post in that group too as it's busier than this one. If you'd like to do that then clicking on the link I've created will take you straight there and you can then join and post in the same way as you did here.

    Wishing you all the best with your upcoming treatment 

    x

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  • FormerMember
    FormerMember

    Hi

    I am so sorry to hear this, must be terribly disappointing + frightening for you.

    I don't have experience of this but wanted to reach out Hugging  I have heard that this can happen with tumours but also that Paclitaxel has very good results in shrinking tumours from other ladies on the forum so I am sure that you will see that tumour getting its butt kicked soon.  Hang in there lovely + try to stay positive (I know how incredibly hard that is).  As Latchbrook has said, pop a post on the breast cancer group + I am sure someone will be able to offer some advice + encouragement from personal experience.

    Sending lots of love Sparkling heart

  • Thank you Latchbrook, I have just re-posted my message on the main breast cancer group.  Appreciate the best wishes and advice.

  • Hello Pippypop, thank you so much for your words of encouragement and comfort.  I have now reposted my message on the main Breast Cancer forum.  Good to hear that other women have experienced the same issue as me, it really helps in knowing I am not alone.  Big hug.

  • I was diagnosed with TNBC in Nov started ACx4 2 weekly Dec. Similar to you had no response to AC tumor did not shrink according to ultrasound. Just had 4/12 weekly pax/carbo and there is definitely a difference in size and texture. I get another ultrasound to assess after 6/12s. Depending on the results we may go straight to surgery. The initial plain is breast saving lumpectomy dependent on tumor shrinkage. My genetics have been done with no genes identified. My oncologist was encouraging and said it was not unusual to see no response to one combination and the next one works. There I am being positive this helps me. I know what you mean about that feeling hearing it hadn't shrunk took me back to the initial diagnosis and that shock. 

    I have just seen your post so you're ahead of me I think. I would love to hear how you're getting on

  • Hello Abc63, glad to hear your tumour is responding to the pax/carbo.  That must give you confidence in your treatment.  Unfortunately I can't say the same for me, my tumour is chemo resistant so hasn't shrunk at all.  The rest of chemo treatment has been stopped and I have to have my surgery earlier than planned, waiting for a date but about a month away.  I will have to have the left breast removed to be followed by radiation therapy and probably more chemo.  I am going to post a separate message in the hope another lady is having/or had a similar experience as me.  It is very difficult to be positive when I read other posts on here that normally tumours respond to chemo.  I am sure I am not the only one but I feel like it is.  I wish you all the best with your treatment, it sounds like you are on the right path.  

  • Hi Coco66

    I’m so sorry to hear your chemo hasn’t worked. It sounds like we have maybe had a similar experience. 

    I was diagnosed with TNBC in November last year and have had 9 weeks of carboplatin / paclitaxel followed by 3 cycles of EC and my tumour didn’t respond to either regimen. 
    My tumour is 40mm. When I started chemo you couldn’t see anything but now it is purple and red and lumpy and angry. It looks awful and is starting to get quite painful. 

    I am having a mastectomy 2 weeks today and am looking forward to just getting rid of it now. 

    radiotherapy to follow and possibly oral chemo afterwards too. 

    I try to keep positive but I have felt so fed up at going through the chemo side effects and then finding it hasn’t worked. I also worry about the future as I am sure everyone with a cancer diagnosis does. 

    Have you had your mastectomy now? How are you feeling?

    Wishing you all the best. 
    xx

  • Hello Sausageroll

    We are definitely going through a very similar experience.  My 2nd phase of chemo was cut short by 3 weeks as it was confirmed my tumour was chemo resistant.  The surgeon wanted to wait a month after my last chemo treatment but it was brought forward by 2 weeks.  The tumour felt like it was growing and my skin was red and I also had some pain.  I had to have the left breast removed and that is now well over 3 weeks ago.  I am still recuperating but I am glad the tumour is gone and I had fantastic news that there were no margins (so all of it was removed) and the lymph nodes were clear, so no spreading.  I was so scared I was going to hear the opposite.  I am starting my radiation therapy in a couple of weeks, just waiting to get more movement in the arm.  Also I will have oral chemo as well, I see oncology next week so will find out more.  It has been a roller coaster but I feel the worst is over.  I really hope my experience has given you some comfort.  I know it is really difficult but try your best to stay strong and you can always ask me any question and I will do my best to help.  That is what I was seeking a few months ago when things were not going to plan, I know everyone is different but there is comfort and support being able to communicate with someone with a similar experience.  Let me know how you are getting on, wishing you all the very best xx

  • Hi I really do hope you are recovering well after your surgery and radiotherapy.  

    I was wondering if you could offer me any advice on the following:

    I was diagnosed with tnbc in May 2020, I underwent a lumpectomy, with sentinel nodes removed, I had FEC-T chemotherapy and 21 days of radiotherapy.  A few months after completing treatment I had a recurrence in the same breast and axillary nodes.  I have been advised that I will have a mastectomy with full nodes clearance.    I started Carboplatin chemo and after the 3rd cycle had a CT scan which showed that the tumours have increased in size and also there is a small tumour showing on my rib.  To hear this news is devastating, and it feels like it is always 1 step forward and 10 steps back Disappointed.  

    I had prepared myself to have surgery, but I have been told that the oncology team need to see if there is another regime that could be used to try and shrink the tumours to enable a clear margin to be achieved.  My fear is that if I have more chemotherapy before surgery the cancer may continue to spread to other areas as the chemo drugs already used have not worked on my tumours.  I know with tnbc, sometimes it is hard to get a drug that works to shrink the tumour and I really just want these tumours removed.  I'm just so worried about the choices being made for me which do not seem to be working.  I have an appointment with the Oncologist and will be asking what other options I have. Has anyone had another chemo drug for tnbc that has worked to shrink their tumour?  

    Thank you and take care

    FaithDe

  • Hello FaithDe

    Yes I am recovering very well, I started my chemo tablets a couple of weeks ago and so far so good no side effects.

    I understand just how you feel.  I also questioned my treatment at one point when the tumour was growing and the chemo wasn't working.  I had quite a few knock backs and it really undermined my confidence in the Doctors and treatment.  Everyone's treatment is different but it sounds as if they are doing everything possible and want to do make sure there are no margins when they remove the tumour, it is so important.  Ask them if it is possible the cancer can spread if they wait, ask as many questions as you need to.  When I heard my tumour was chemo resistant I thought that was it, I didn't think I would beat the cancer.  I was very lucky there were no margins and it hadn't spread so may be the chemo did do something but I will never know for sure.  So I am clear but of course I have moments when I still feel nervous it might come back.  I know it is really hard and how isolated you must feel at times but you can reach out to me anytime.  I hope other ladies respond to you as well, it really helps to talk to people going through the same ordeal.  I wish you all the strength in the World and try to stay strong.  Please let me know how you are going and again just drop me a line when ever you need.  Sending you lots best wishes and a big hug.