Lumpectomy followed by chemo.

Hi, I'm new to this and really need advice please?

I had a high grade dcis and had it removed but did not get clear margins. The consultant wanted me to have a mastectomy due to not getting a clear margin but I didn't want this so she agreed to try again for a clear margin and lymph nodes removed. I had this donemail and got the clear margin and clear lymph nodes. The initial plan was lumpectomy and radiotherapy but now because they didn't get a clear margin they want me to have chemotherapy and radiotherapy. I really don't understand why I can't just have radiotherapy as I really don't want the chemotherapy with all the things it brings. I'm just wondering if anyone else has been in this position and refused? It's a really scary situation as they say it's to make sure there's no stray cells and to reduce the risk of it coming back but I can't find anywhere if people have refused and been ok. 

 

  • Hi Pink 

    I'm sorry I can't help with your question but I just wanted to say if you do end up having the chemotherapy don't be too scared if it. 
     

    When you first hear the word chemotherapy It's very scary and although it can come with some nasty side effects, it doesn't always mean you are going to suffer from them all. I had 5 months of chemotherapy before surgery and although I did get some side effects it wasn't anywhere near as bad as I anticipated. 
     

    I hope you get the answers you need 

     

    I'm here if you have any questions.

    Sarah xx

  • Hi, thank you so much for taking the time to reply . I'm just so scared I feel good again now but am also scared to risk skipping the chemo incase something bad happens I'm so stressed and confused but everything about the chemo scares me, it has so many side effects. Hope your on the mend now . 

  • Aah it's totally understandable to be scared honestly. Have you told your consultant about your worry's? It's worth telling them how you feel and they will be able to tell you more with regards to how much the chemo is needed etc. 
     

    I can't tell you that chemotherapy won't give you side effects but anytime I got any kind of effects from it I tried to keep it in my head that the chemo was Battering that nasty cancer for me but for it to do that it would have to hit me a little bit too.
     

    If I'm being completely honest I, myself would always go with what the Drs say on this. They have seen so many cases and would only put us through treatment if they thought it was necessary. 
     

    You are a lot Stronger than you think

    I hope your ok 

    Sarah  xx

  • Thank you Sarah it really helps talking to someone who understands .  Yes I had my appointment yesterday but they just seemed to sell it to me hard that I need it, which I understand but just feel pressured. It just seems extreme to me because I got clear margins I would be happy with just radiotherapy. 

    Thank you for your advice how are you getting on? X

  • Aah your welcome. It defintely helps to talk :) 

    do you have a breast care nurse? Maybe you Coould contact them and just put your questions to them see if they can help give you answers. 
     

    I'm good thank you :) I had 5 months of chemo last year and then mastectomy in January and now have 5 sessions of Radiotherapy left and then I'm done :) 

    xx

  • Hi, Pink.

    I had a lumpectomy in mid-December and am now on week 5 of chemo, to be followed by radiotherapy. My margins were clear as were the lymph nodes. 

    The way it was explained to me was that getting  chemotherapy is an attempt to kill off any other cancer cells in your body that you don't know about whereas radiotherapy is targeted in the area where the cancer was found.

    The side effects haven't been as bad (so far) as I was expecting although my hair came out in handfuls after 3 sessions - I'd been told that would happen. Not everyone gets the same chemo drugs so not everyone loses their hair.

    I thought the advantages of chemo outweighed the side effects but each to their own

    I don't know anyone who chose not to have chemo but I am sure there are ... hope you get some answers that set your mind at ease and help you make the best decision for you xx

     

  • Hi Wifey, thank you for the reply. So your in the same situation as me then? Hope your on the mend now. That's awful about your hair I'm sorry, they told me I can use a cold cap for 3 lots then not for the other 3 as their weekly . I'm just so scared of it it's untrue I feel like I've had enough stress I don't need any more.
  • Hi Sarah glad to hear your nearly finished, how are you feeling?  Yes I have a nurse but she's really trying to sell me the chemo hard, which I understand but it's OK for her it's not her body is it?  I'm just really torn I'm scared to have it with all it brings but scared of the risk aswell. Are you able to still go about your daily routine on the chemo?

    Thank you for your help x

  • Hey Pink

    I was able to carry on as much of normality as I could to be honest. My treatment was pretty harsh too. I had Paclitaxel every week for 12 weeks with another chemo called Carboplaitin added in every 3rd week and then following  that I had Epirubicin with Cyclophosphamide every 2 weeks for 8 weeks. 

    I got through the first 12 weeks not bad at all and I'd say the last 8 weeks were probably the hardest, as that treatment made me feel a bit rubbish but I was still cooking when I could and walking the dog(I got a puppy just after starting treatment which kept me active :) and still is .. she's amazing :) 

    The most deistic side effects was probably losing my hair but they do have something called a cold cap which can prevent this from happening. It wasn't available when I started due to COVID as it adds a bit of time onto your treatment and to be fair I'm glad really cos I don't think I'd of fancied it but it's an option if your worried about losing you hair.

    please keep asking questions if it's helping you to get things clearer in your mind. I'm happy to help 

    Sarah xx

  • Thank you Sarah.

    Mine is 3 monthly cycles of epirubicinema and cyclophosphamide and then 3 weekly cycles of paclitaxel and carbonatin. They said I could use the cap for the first 3 but not sure about the last 3 due to it being weekly . I sounds so superficial I know but I really don't want to lose my hair, I couldn't disguise it from work either the job I work in. So glad to hear you wasn't too bad that's made me less worried knowing you could still potter around. I have two dogs so I need to walk them as well and kids to chaise . 

     

    Thank you for your support really helps x