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. 

 

  • Aah your welcome honestly I know it helps to talk.

    To be honest the side effects for my first part were so minimal I was weirdly relived when my hair started falling out cos it proved to me that it was in my system and doing it's job. I bought some really nice head dresses and mixed and matched them With my clothes when I could and to be honest they felt nice. I also sometimes just went out with nothing on.. I figured if I could walk around Aldi with a bald head it would set me up to never worry about the way I look or what anyone else thought ever again! Ha ha. I also got a really nice wig fir when I went out for special occasions but only wore it a couple of times. 
     

    you will get through it honestly and strangely it goes very quick. 
     

    xx

  • Hi, I had similar to yours but have had the Ocotyoe DX test with results yesterday 33. I am having a telephone consultation with oncologist next week. Like you I don’t know whether to have the chemo or not. It’s so scary. 

  • Hi, hope your doing ok,  it is the most scary time . I've never heard of the test you mentioned im sure I was told that they would do something similar to help me decide. I came out no wiser than I went in and was more or less just told that I was high risk due to certain factors and that they could not be sure there was no stray cells and to prevent it returning. It's a really hard decision but you just have to think what is best for you that's all you can do.

  • Hi Sarah, I think your so brave I wish I was as positive and didn't care like you . Has your hair started to come back yet? I'm worried about my eyebrows and my lashes aswell, so pathetic it's hair but it's how you feel inside if you know what I mean x

  •  

    Hi Pink,

    I am so sorry to hear that you find yourself in this dilemma. The way you feel about chemo is perfectly normal. Most of us are a bit wary of it, but there is no way of telling who will have side-effects and who won't. Saraheileen and Wifey have given you a good account of how they felt throughout chemo, yet both still felt that the gain was worth the side-effects.

    It is totally up to you what you decide to do. I thought that I would add a different perspective for you to weigh up. I was diagnosed with breast cancer 11 years ago and had a lumpectomy, followed by Tamoxifen. At the time I was advised to have radiotherapy as well. When my pathology results came back after surgery, they stated that my surgeon hadn't achieved clear margins. He informed me that he had realised this at the time and had removed another sliver and, assured me that he had definitely removed enough.

    This was a grade 1, Pure Mucinous Breast Cancer, which is one of the less aggressive forms. Just a few months after my surgery I discovered another larger lump in my other breast. My surgeon looked at it, but never examined or tested this and told me that it was harmless. Needless to say, I was not reassured by this and, as a result, I refused to have radiotherapy for one breast, while the other was being ignored. 

    We reached a Mexican standoff and, I was eventually referred to see the surgeon in charge of all the surgeons in the area, who had been told that I was refusing treatment, but not why I was doing this. This surgeon eventually agreed to examine me and immediately found the lump. He thought that it might be cancerous and, I had a mammogram, ultrasound and several biopsies. Fortunately this turned out to be benign. This new surgeon offered to take over my care at that stage and I accepted.

    I was then referred to see two eminent researchers in radiotherapy. One thought that it was still worth a try, but the other showed me a lot more research and advised me that there was no point in having it any later than three months after surgery. His argument overall was by far the more credible one of the two, so I didn't have radiotherapy.

    Almost a year to the day after my original surgery, I found another lump in my original breast. This time I wasn't so lucky and, I was told that it was another primary grade 1, Pure Mucinous Breast Cancer.  I had a double mastectomy followed by Letrozole for 6½ years. My suspicion and that of other surgeons who I have seen since, was that there may not have been enough margin taken originally and, that this may have been re-growth as a consequence. I don't regret refusing radiotherapy originally, because my other cancer wouldn't have been discovered until much later if I hadn't dug my heels in. I was told that I didn't need chemo or radio after my mastectomies.

    I am now undergoing further tests for a third bout and wonder if this would have been needed if I had been given chemo at the time. This just goes to prove that, even with a cancer that is not supposed to be aggressive, there are exceptions to every rule and none of us have the same experience as the next person. I guess what I am saying is that by having chemo now, your oncologist is trying to save you from going through it all again at a later date, when the disease may be more progressed. Your care team wouldn't be pushing you to haveit if they didn't feel that it was the best course to take.

    Whatever decision you make, I sincerely hope that it is the right one for you. Do please keep in touch and let us know what you opt for in the end. We are always here for you.

    Kind regards,

    Jolamine xx

  • Thanks hope you are recovering well.

    best wishes Julie 

  • Aah yes my hair is growing more and more every day it's coming in so fast. I did lose my eyebrows and lashes, which was the thing I was mostly dreading but when it happened it wasn't too bad I just drew on my brows and I bough magnetic eye lashes although didn't use them too often. 
     

    ive heard microblading is good and if you get it done before Treatment you have brows if they do come out. I was too late by the time I heard about it but might be worth having a look into it 

     

    Hope your ok 

     

    Sarah xx

  • Hi Jolamine,  so sorry to hear your story i hope your getting better now. Your story has really helped and put a different perspective on my situation. I agree as scary as it is it isn't worth the risk I don't think. This was definitely what I needed to hear to give me the kick I needed to go ahead. Thank you so much for your advice you have really helped and maybe saved me from myself. 

    Xx

  • Aww thats fantastic Sarah, my hair grows slowly so might not be as lucky. Yes i did think about microblading but I think covid has ruined that option for me. And magnetic lashes is a fab idea, thank you so much for the advice. I think my brain went down a dark hole that couldn't see an light. Xx

  •  

    Hi Pink,

    I didn't mean to sway you, just to give you a perspective from the other side of the coin, but I'm glad if it has helped you to make up your mind. None of the cancer treatments come without side-effects, but they are here for a reason and they save a number of people. I am currently undergoing tests for a 3rd bout and, I wouldn't wish this on anyone.

    I wish you all the very best with your cancer journeyand look forward to seeing you come out the other side. This time next year this will all be but a memory.

    Kind regards,

    Jolamine xx