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Melanie33's avatar
Melanie33
Member
13 years ago

Newly diagnosed and scared

Hi I'm new on here. I've read a few posts and stories. I was diagnosed with stage 1 grade 2 ductal cell invasive cancer on the 17/09/12. I found the lump only a week prior by accident while watching tv. It was 15mm x 9 but the invasive part was 10mm. No history of bc and only 33 I wasn't expecting it! I am married and have a daughter who is nearly 3. We were trying for our second. We had a miscarriage in may and I guess now I can see why that happened. I had a wide excision and snb. The 3 Nodes and margins were clear so that was the best news I'd heard in the preceding 2 and half weeks. I'm now waiting for radiotherapy. I don't need chemo. Or rather it would increase my survival chances by less than 1% and it obviously has its own set of problems so I'm lucky. But today (despite so many others with less positive pathology results) I just don't feel lucky. I'm scared of the rad a bit now that it's getting closer. But I'm scared that it will come back! And I haven't even had my treatment yet. I read stories of it coming back and it makes my heart race. Also maybe I should be just having a double mastectomy? Mine is ER +ve so I'll be having tamoxifen for 5 years. I think I'm having a bad day. Post surgery I was pretty good but waiting to find out when I start rad is hard. It's difficult to keep on top of thoughts especially at night!

16 Replies

  • Hi Melanie, Don't beat yourself up about feeling down, it's a natural emotion just try to back it up with a better day the next day, fake it till you make it!!! Yes I have to have a mastectomy not because of family history but because its in three milk ducts so they can't just remove it. I am currently deciding whether to do a double because of family history. The genetics are saying that I'm not at high risk of it re occurring in the other breast but I have a 20% chance. Whilst this isn't high enough to be too concerned its not low enough to not worry about it. I am leaning towards a double as I just don't want to have to go through this again. Chin up darl, it will get better. Anne xx
  • Thank you for the words of reassurance. Yes I am luckily HER2 neg. I tried to phone my rad onc today with another list of questions but hopefully will hear back tomorrow. 

    I try to remain positive but I think as I haven't seen a specialist in 2 weeks and I'm waiting for my rad to start I am starting to worry and get irrational. I just look at my daughter and feel so scared about what I may miss in her life. Which is not they way to think I know but it happens. I am seeing a psychologist next week too so hopefully I can get some coping techniques. 

    I will be looking at having tamoxifen. The dr did say we could reassess things after a couple of years if I still want to have a child but I'm thinking maybe i won't be taking that risk. But I do feel a bit sad as we were hoping to be having a second next year some time. I know I should (and I am) so grateful for what I've got but I still feel a bit cheated. She talks about having a baby sister and it breaks my heart.

    Anne MP - do you have to have a mastectomy because of the family history? I just wonder if that is what I should be doing. They (surgeon and rad onc) don't seem to think so but now I can't remember why. As I said i will chase up these questions with my dr. 

    Emotionally I've been pretty good apart from the initial waiting for results (knowing my lump was highly suspicious) and just the few days post diagnosis. But since seeing the surgeon I felt like things happened quickly and that was a good thing. But perhaps thing are hitting me a bit now. Anyway I will continue to use this site as a moral boost! 

  • Thank you for the words of reassurance. Yes I am luckily HER2 neg. I tried to phone my rad onc today with another list of questions but hopefully will hear back tomorrow. 

    I try to remain positive but I think as I haven't seen a specialist in 2 weeks and I'm waiting for my rad to start I am starting to worry and get irrational. I just look at my daughter and feel so scared about what I may miss in her life. Which is not they way to think I know but it happens. I am seeing a psychologist next week too so hopefully I can get some coping techniques. 

    I will be looking at having tamoxifen. The dr did say we could reassess things after a couple of years if I still want to have a child but I'm thinking maybe i won't be taking that risk. But I do feel a bit sad as we were hoping to be having a second next year some time. I know I should (and I am) so grateful for what I've got but I still feel a bit cheated. She talks about having a baby sister and it breaks my heart.

    Anne MP - do you have to have a mastectomy because of the family history? I just wonder if that is what I should be doing. They (surgeon and rad onc) don't seem to think so but now I can't remember why. As I said i will chase up these questions with my dr. 

    Emotionally I've been pretty good apart from the initial waiting for results (knowing my lump was highly suspicious) and just the few days post diagnosis. But since seeing the surgeon I felt like things happened quickly and that was a good thing. But perhaps thing are hitting me a bit now. Anyway I will continue to use this site as a moral boost! 

  • Hi,

    I too have just been diagnosed, 2 weeks ago in fact.  DCIS so I'm lucky its been caught early.  I do have to have a mastectomy and I am deciding whether to have a double or a single.  Both my mum and sister have both been diagnosed in the last 12 months and this prompted me to get a mammogram (thank god).  Whilst our cancers are similar they are not high risk BRCA1/2 but I still am at a slightly higher risk of it reoccuring.  Im so confused as what to do, I sometimes wish the doctor would just make the decision for me.  The waiting is the worst I just want it done and over with so  I can get on with a "normal" life, if there is one after this!!

     

  • I'm sorry to hear you are on the bc ride at such a young age.It's so unfair and so random.So many of us don't fit the bc risk profile.But welcome to this network where you will get lots of information and support.There is a young women's group on here if you want to join.Some of us are going through treatment and some,like me,are over it all.Yes,middle of the night seems to be the worst time when your fears can overwhelm you.I would just get my husband's arm around me and I'd feel a little safer.Finding out all the info you can on treatments /drugs also helps you to make informed decisions.Have you ordered the "my journey kit"yet? It's helpful and it's free.I think it's good news that your lymph nodes were clear -that gives you a really good prognosis. I can understand you being scared about radiation-I was too.Have all your questions been answered?Pin your radio oncologist down and ask-  you need to feel comfortable with your decision.Radiation treatment itself,is not too bad.It's abit scary at first but you get used to the drill.By the end of the treatment I was tired and my boob was red.Now I was in the unlucky 8% whose cancer came back(7 years later) in the same spot despite radiation.I will say that I didn't follow through with Tamoxifen cos I had bad side effects from it at the time.I had to have a mastectomy and then chemo and am now on Tamoxifen.Because I'm through menopause,it seems to be agreeing with me this time.I've been all clear for over 2yrs now and enjoying life.I've beaten cancer twice so I'm not so scared now which may sound strange.You'll be ok Melanie-do your research and go with what feels right for you.I would say though,take Tamoxifen when the time comes and if you get side effects then know that there are drugs to counteract them.We are all here for you and know what you are going through so don't feel alone.Blog back here for support or to vent your feelings-it helps.

                       Sending hugs - Tonya xx

  • Hi there

    Oh honey I feel so bad when this happens to a young one like you,it's not fair.

    I presume that your are HER2 neg, you didn;t say. That usually comes with chemo attached. I too am waiting to start radiation having finished my chemo. Stage 1 Grdae 1 IDC, clear nodes and margins, ER+ and HER2+.

    I think the waiting in between things is the hardest. I just want to get on with it and get it over.

    After a bit you stop thinking about the ones that come back (well most of the time anyway) and just focus on treating THIS one and moving on. There is nothing to be gained from worrying about something you can't do anything about. The risks are there, of course they are, but the survival rate now is 90%, that's amazing ! Think about that and not the risk of recurrence. You'll drive yourself nuts. If it happens, you;ll deal with it then.The thought will sneak intoyour head whenyou least expect it- usually in the middleof the night when you can't sleep - but push it away and replace it with a happy thought.

    Live with and love your family. Make plans for the future, those are the things that matter right now.

    lots of love

    magicmum