Forum Discussion

Natalie_carr's avatar
11 years ago

So up and down

hi all,I was diagnosed with dcis on the 1st of May.my surgeon organised a lumpectomy followed by six weeks of radiation after that.Just to be sure two days before my surgery he sent me for another mammogram and ultrasound and the next day was called into his office and with less than twelve hours until my surgery told me I had to have a mastectomy. I took it really well and thought I was doing great.

my mastectomy went well the worst bit was the drain and armpit pain for me.Then the ten day wait began for results,which was so hard.but luckily got the all clear luckily as it was grade 3 and a twelve cm tumour area.Now I'm so worried about getting cancer again its consuming me,I have five kids a husband and I'm 39.my surgeon says I have a one in two chance of getting cancer back within the next five years and that having my other breast removed won't make much difference.does anyone have any stories for me pls? I also go tomorrow to get a growth inside my sinuses removed that the surgeon has no idea what it is so extra worried about that too.....

27 Replies

  • Hi Natalie,

    What a time you have had!  I hope your armpit feels better now.  Did the physio at the hospital give you exercises to do?  It really makes a difference down the track to do them as often as possible.

    I am also TNBC, and we are all usually Grade 3 (aggressive) when diagnosed.  My tumour was 3.5cm with no lymph involvement, and I had a bilateral mastectomy.   My Medical Oncologist  gave me chemo for 3 months and followed it with 28 radiation treatments. Have you seen your MO yet?  With treatment the statistics can be a lot better than one in two.

    It is now 3 years since I was diagnosed, and I only need to see my MO annually.  I hope your sinus surgery goes well.

    Stay in touch - we are all here for you when you need us - xxx Michelle

     

  •  Hi Karen, I also had a micromet in my sentinel node which worries me but the surgeon said for micromets they don't go back in and take out all the other nodes. Is that the case for you? But we do need to consider chemo, luckily for me I did the Oncotype test and got a score of 9 so low risk and chemo would be no benefit. My cancer was also a mucinous carcinoma which is very rare, only 2%. Is that what yours was? You mentioned a mucinous tumour.  Has your doctor considered an Oncotype test for you as if you may also be low-risk as the Mucinous Carcinomas are usually low-grade. Mine was a mixed 90% mucinous grade 1 tumour with a 10% grade 2 NST thrown in. I am 45 years old and am now on Tamoxifen. Hope you go well at the doctor today. Take care, Jacqui XX

  • Hi Natalie, I had a double mastectomy last November and am just going through reconstruction now with expanders. I think the constant fear of recurrence is so hard to get your head around. For me I am trying to walk most days, kick my Coke Zero habit and eat more veggies and fruit. Regular exercise I was told can cut your recurrence risk by 50% so that sounds like a good reason to get out in the winter sun and go for a long walk. Take care. Jacqui xxx

  • Thanks for the reply Karen and all the best to you.wow what an exhausting time you're having also!!!yes let's hope the thoughts leave us alone soon xxxxxx

  • Hi Robyn thanks for the reply,the cancer was also triple negative which I forgot to put in my post.im having no other treatments also so that is good.but just can't shake the feeling that there is still something wrong.xxxxx

  • Hi Natalie,

    Welcome to the network.  You've come to the right place.  It's been my lifeline of info and support this past month.  Sorry to hear about your diagnosis and how changes in treatment can just floor you.  I can certainly relate to the changing goalposts. 

    I'm currently sitting up in bed (my morning office) 9 days post op from a mastectomy.  It was my 3rd surgery in the space of 5 weeks after initially having lumpectomy/sentinel node biopsy showed a bigger and more irregular mucinous tumour than was expected with DCIS in tissue margins. After a second shot at getting cleaner margins was unsuccessful, I had to have a mastectomy (as I didn't have much boob to start with).  During the month of May I was constantly thinking that I may need a mastectomy so I had a bit more time to get my head around it than your 12 hours. 

    I'm finding the scar is healing ok, and it's still a shock when I see it. Reconstruction will be later.  I go to the dr this afternoon for the drain to be removed finally and the pathology results.  I know I had micromets in 2 of 5 nodes and will need chemo. I'm a bit older than you, 48, but the prospect of going into early menopause doesn't rock my boat either.  But I've got to do it. I've got 2 beautiful teenagers who are still cuddly! 

    Oh dear, what do you say about recurrences? Yes I think it's on the mind of everyone who gets cancer.  Hopefully as time goes on, it won't dominate my thoughts (especially at night).

    Stay in touch and be kind to yourself

    Karen xx

  • Hello Natalie,and welcome to the online network:) Here you will get all the support you need to get you through the coming weeks and months.What a shock for you to find out you needed a mastectomy,and so quickly! But what you need to try to focus on,is that with clear margins,you have an excellent prognosis.Are you having chemo or just radio? Do you know if you will be taking medication? Breast cancer these days is very treatable for the majority of women,and having the other breast remove makes NO difference at all.If you got cancer in the remaining breast,it would be a totally new primary cancer. NOT connected with the cancer you have now.There has been a lot of discussion on this forum over the past few months about the fear of recurrence.It is common,and I am sure that as time goes on,you will start to realise that you think about it less and less.I am sure that many others will be on here shortly to tell you their experiences,and hopefully put your mind at rest a little bit.Sending you a BIG hug:):) Cheers Robyn.P.S. Stay in touch .xox