Just need someone to talk to.....

Shirleyt67 Member Posts: 3

Since my my diagnosis in Feb this year I have read through online discussions but never had the confidence to join in.  After being up all night looking up websites etc I have decided my time would be better spent seeking support rather than looking up scary statistics (I know! Everyone tells me to stop looking up things but sometimes it actually reassures me). 

Anyway a week after diagnosis I started neo adjuvant chemo which was hard but I did really well.  Surgery was performed just over a week ago and whilst I am healing really well I'm devastated that I need to go into surgery again next week as my margins weren't clear.  As I am very small (A cup) they have said I will now need a mastectomy as they can't remove anymore tissue without it looking terrible. I'm actually okay with this (or in a bit of shock) but what is really worrying me is that they now want to do more scans.  The oncologist said they wouldn't redo scans unless there was a reason but now the surgeon says they need to be done to restage the cancer? My tumour did shrink with the chemo but it was still there and nodes were also positive. I'm so scared they are redoing scans because they think it has spread.  The nurse said it was routine? 

I feel like I'm back at the start again - waiting, worrying.......  Hopefully I get a bit of sleep tonight! 

C x


  • WavingNotDrowning
    WavingNotDrowning Member Posts: 48
    Hi There.  Hello.  I was also diagnosed in Feb had neoadjuvant chemo, surgery and just started radio.  I have found this forum to be very helpful and supportive.  Sorry you have had to go back for more surgery.  I won't say not to worry cos I know that doesn't help me.  Trying to figure out what the surgeon/oncologist/radiation oncologist is thinking has also taken up a lot of my time but at the end of the day I know they have my best interests at heart.  If your surgeon has said it is for restaging and the nurse said it was routine I would go with that.  Enjoy a good sleep - it helps. xx 
  • primek
    primek Member Posts: 5,392
    I would be stressing too. It's  normal to worry. I guess though as there has been a lumpectomy previously the breast size and shape is different from your original scans.  I had a skin sparing mastectomy and they needed to be sure of the tumor location to ensure enough clearance from the skin etc and muscle wall....and the location to any potential nodes. I like to think of the surgeon as being thorough and ensuring not only are you cancer free after but have the best cosmetic outcome too. Hope all goes well. Kath x
  • Bevkk
    Bevkk Member Posts: 26
    it is a very worrying time especially having to face it all again. My situation is different because I had my surgery first and then chemo. I was given the option of lumpectomy or mastectomy. I chose masectomy as I wanted to be sure that everything was taken the first time. Every person is different and every treatment is individual. I'm sure your medical team has your best interest at heart and need to reassess your situation before recommending further treatment. Talk to your breast nurse for reassurance. 

    All the the best for your future journey.
    love and hugs Bev
  • SoldierCrab
    SoldierCrab Member Posts: 3,449
    oh Shirley I hear your pain and stress, it is very hard when we have to reface surgery But I would like to agree with the other posters and say your team have your health at the front of their focus when deciding what to do next. Ask questions here and we will always support you point you the direction of good information and laugh and cry with you if need be. 
    I would like to encourage you that you have been strong and gotten through the Bl**dy journey so far ... rest assured your team are working in your best interests. 
    There are so many advances in the treatment  that what was proposed even in Feb this year can be changed as they find better options for allowing us to survive and get back to life... a different life but still life.... I am 4 years down the track and I can say I am happy with the choices i made back then Double mastectomy and chemo and rads.... I am grateful to be alive and here with my kids 4 years later .... 
    Always come and share your fears and worries we are happy to chat 
    hugs and energy to deal with this bump in the journey 
    Soldier Crab xoxox 
  • Shirleyt67
    Shirleyt67 Member Posts: 3
    Thank you everyone, I feel so much better tonight after having read your supportive comments. I have held it together for a long time and just needed a moment to let myself cry (without upsetting my kids). Going to go and try to get a good nights sleep. xxx
  • rowdy
    rowdy Member Posts: 1,165
    Hi Shirley it is a tough trip and our emotions run wild. I started with a lumpectomy and then had to go back because not good margins, Then had second and still not good margins. In the end I had chemo and a mastectomy. The treatment can vary so much from doctors,, we have to trust the doctors which is hard to do when you are feeling so crap. I'm still trying to find my new normal time helps. The best advice I ever got was stop being so hard on myself as my body and mind were going through so much and I needed to give it time to heal. Take care and visit often
  • Ann-Marie
    Ann-Marie Member Posts: 1,142
    @Shirleyt67 welcome to the online network. As you can see the members are here to provide you with the support you need on your journey xx
  • whoever
    whoever Member Posts: 1

    Sending you hugs... Trust your team, they know what they are doing. I have had a whirlwind experience and it feels like you are on a merry-go-round that no one will let you off. Keep in touch on here. x

  • socoda
    socoda Member Posts: 1,767
    Hi Shirleyt, Wishing you all the best with your further scans. I can totally understand you being anxious and nervous about having to
    have a mastectomy after your margins not coming back clear. I did have a mastectomy as I was told that far too much tissue was going to need to be taken and my remaining breast would look very deformed. It's so much to get your head around particularly when you are expecting a certain outcome and then you don't get those results. I'm sure that your kids would totally understand you being upset,  but I can also understand you shielding them too! Please come back and let us know how you are going and wishing you all the best for your next surgery. Big hugs Xx Cath

  • melclarity
    melclarity Member Posts: 3,524
    Hi Shirleyt67!
    Im so glad you decided to pop in and post! The journey is so very difficult and I have found it so helpful to be able to come here and vent and know I am completely understood. I dont get that anywhere else! Understood that is! It is a roller coaster and its hard to find your feet when they are constantly knocked out from under you. It does sound like you have a very thorough medical team and I would have faith in that. The Scans I know immediately your thoughts would be the worst because that is what this journey has taught us???!!!! BUT I honestly feel this is just a process and something they need to do and not for any other reason other than since youve had Chemo so to see how things are now. In 5 yrs Ive had 2 major lumpectomies, Breast Cancer twice and treatment and I am all clear and moving on!!! I do however have to have a Mastectomy because of a recurrence. So big breath, one step at a time, and I find dont look too far ahead but what you have at hand, it helps you cope better.

    Melinda xo
  • Melhay
    Melhay Member Posts: 157
    Hi Shirley,
    Hope you get the answers regarding your scans soon.
    Having been diagnosed with Breast Cancer twice in the last 13mths (right & then left breast) I still think the waiting is hardest part!
    Wishing you all the best

    Mel xx 
  • lrb_03
    lrb_03 Member Posts: 1,269
    Hi Shirley. Hope the scans go well when you have them. This might sound stupid, but I'm almost jealous. I, too, had neoadjuvant chemo. I had minimal response to chemo, the biggest change was a reduction in the proliferation rate. 9+ months after finishing radiotherapy I still don't really know what it all means for my future. 
    Thinking if you as you wait again on tests & results, Lyn
  • Ne
    Ne Member Posts: 336
    Hang in there chicky, you came to the right place for love and support.  Please keep us posted.  I hope you will soon have the reasurance that you need to keep going on your road to recovery.  Best wishes xxxxx
  • Brenda5
    Brenda5 Member Posts: 2,423
    They are just probably doing extra scan to be on the safe side. It wouldn't hurt to be checking nodes as well so they know just how many to extend surgery to. I did the straight out left mastectomy and one sentinel node but that node came back positive so I had to have all nodes removed with surgery. My surgeon didn't bother with further scans though, he just operated. Turned out they were all fine in pathology and it was just the sentinel affected.
  • iserbrown
    iserbrown Member Posts: 5,606
    Easy for us to say don't be scared however we've all been in that frame of mind at some point along the way.  For me they took out the sentinel node and two guards at the time of Mastectomy.  You are on that roller coaster but heading in the right direction, a new you that will be rid of Breast Cancer.

    Take care and take a few deep breaths as we are all here supporting you and yes keep away from Dr Google and the statistics, it doesn't do your blood pressure or demeanour any good!

    Sending you a virtual hug from Christine xx