Newbie

Penn
Penn Member Posts: 3
edited May 2013 in General discussion

I am newly diagnosed and waiting to see my Oncologist in Robina next Thursday to discuss surgery and treatment options. I have been diagnosed with Invasive ductal carcinoma - grade 1. I have received the My Journey Kit and read most of the material. The waitiing and wondering what will happen is killing me, but I try not think about it too much. I assume I will go through surgery but not sure about the treatment. Any feedback would be greatly appreciated.

 

Comments

  • Mich x
    Mich x Member Posts: 1,530
    edited March 2015

    Hey Penn

    Lovely to meet you but sorry you have to be here.  I am so glad you have already received your Journy Kit (my bible).  I have just referred back to it once again to try and put a bit of a plan together of my journey up to raiotherapy.

    Your journey may and will be different I am sure.  Every treatment is slightly different.  A lot depends of the grade, size, location, clearance around tumour.

    I had the whole kit and caboodle due to size, grade, lack of clearance etc etc.  but I was still one of the lucky ones as lump was found early and so on.

    You are lucky in that your diagnosis is a Grade 1.

    My story goes like this

    Lump found, mammogram and ultrasound, receive results, core biopsy, cancerous, meet breast surgeon, pre admission, injection of dye to find sentinel node, surgery 2 days before Xmas 2011, find out results middle of January which was Grade 2, 3cm, infiltrating ductal carcinoma, ER+ PR+, 2 nodes involved, bone scan, 2nd surgery for total axillary clearance, CT scan, post op appt, meet with radiation oncologist, meet medical (chemo) oncologist, heart gait testing, chemo education and tour, 6 cycles of chemo - 3 FEC & 3 Taxotere, 35 sessions of radiotherapy.  There is a lot of other things in between these but just keeping it simple.  You may not have to deal with a lot of this it all depends.

    I did do up a timeline as a document but I am unable to download on here.  If you want more detail please private message me your email and I will email this to you.

    i hope this has helped a little.

    All of us on here fully understand how the waiting, the unknown and you just want to get on with it is all about.  Keep as busy as you can so as not to think about it too much.

    Please come back on here any time to ask if you have any questions as we would love to help you.

    Lots of love, Mich xoxoxo

     

  • magicmum
    magicmum Member Posts: 285
    edited March 2015

    Hi there, welcome to the club no-one wants to join.

    Pretty much the same as me your diagnosis. I have fingers crossed that yours isn't HER2+.

    I had a lumpectomy, sentinel node biopsy - results HER2+ and ER/PR+. Followed with 6 rounds of TCH, then a further 12 rounds of Herceptin alone, (down to the last 2 now) 30 zaps of radiation and I'm on Arimidex for 5 years. I am hoping that with all that ammunition I won't get it back.

    I trusted my surgeon and my onc, I do everything they suggeest and I ask questions ALL the time. Anything, everything, whenever I think of something that I don't know the answer to. I Google a lot (which many say you shouldn't cos it's scary) but I like to know. Knowledge is power I reckon. Here is a great place too with so many ppl and so many stories and SO much helpful advice and friendship.

    Best of luck with results, do let us know.

    magicmum

  • Penn
    Penn Member Posts: 3
    edited March 2015

    Thanks for your reply. Do I have more tests to do even though it has been diagnosed as Cancer through the biopsy? What is HER2 and ER/PR? Sorry I have to get used to all this terminology.

     

  • magicmum
    magicmum Member Posts: 285
    edited March 2015

    As Tonya said they do extensive tests to find out exactly what needs to be done to help you.

    Her2+ tumours are generally more agressive and more likely to recur so even if it is a little one you will most likely have chemotherapy. They have an overexporession of a protein - human epidermal growth factor - which little cancers love. Herceptin is given with the chemo and continues for a full year to put markers in your cells which react to the overexpression and suppress the cells from multiplying. Hormone positive tumours will be treated with endocrine therapy, brings on menopuase if you haven't had it already.

    I found it to be more helpful once I had all those things over and explained - I knew what we were fighting and how. And you can then read up on the new developments in treatment with a bit of knowledge. Be sure to ask questions on anything you are not sure of, most docs will explain if you want them to.

    good luck

    magicmum

  • magicmum
    magicmum Member Posts: 285
    edited March 2015

    As Tonya said they do extensive tests to find out exactly what needs to be done to help you.

    Her2+ tumours are generally more agressive and more likely to recur so even if it is a little one you will most likely have chemotherapy. They have an overexporession of a protein - human epidermal growth factor - which little cancers love. Herceptin is given with the chemo and continues for a full year to put markers in your cells which react to the overexpression and suppress the cells from multiplying. Hormone positive tumours will be treated with endocrine therapy, brings on menopuase if you haven't had it already.

    I found it to be more helpful once I had all those things over and explained - I knew what we were fighting and how. And you can then read up on the new developments in treatment with a bit of knowledge. Be sure to ask questions on anything you are not sure of, most docs will explain if you want them to.

    good luck

    magicmum

  • Penn
    Penn Member Posts: 3
    edited March 2015

    Well I went into surgery last Wednesday with apprehension.

    Surgery did not go as planned. 2 more lumps were found in my breast on the morning of surgery by the Radiologist while they were putting in my wire for the first lump that was found. So all very uncertain going into theatre. I had a partial removal of the breast.

    It is now a week later and I am feeling great, almost back to normal. Test Results received today at the hospital this morning. I have NO cancer in my lymph nodes BUT they did not get all the cancer from the first surgery so I have to go back in next week for the surgeon to remove it. I also do not know whether I am postive for hormones present or not - still waiting for that result. so on the whole I am pleased with the result - no chemotherapy this stage still going ahead with Radiotherapy and no Masectomy. My right boob looks good, not deformed just a bit smaller than my left one. My scars have healed nicely as my arm is no longer sore either and have full movement back in my arm. So we will wait for next weeks surgery now.

  • TonyaM
    TonyaM Member Posts: 2,835
    edited March 2015

    Thanks for the update.I'm so glad your lymph nodes were clear and surgery went ok for you.What a pain to have to go back again to get clear margins but it's not uncommon.Sounds like you were making a good recovery-keep it up.

                                      Tonya xx

  • TonyaM
    TonyaM Member Posts: 2,835
    edited March 2015

    Thanks for the update.I'm so glad your lymph nodes were clear and surgery went ok for you.What a pain to have to go back again to get clear margins but it's not uncommon.Sounds like you were making a good recovery-keep it up.

                                      Tonya xx