Nervous about next step

Schwen
Schwen Member Posts: 34
edited May 2018 in Newly diagnosed
Hi everyone, I was diagnosed on 13th April with grade 3 invasive breast cancer, had a Mastectomy and lymph node removal/biopsy on the 9th May, on the 25th May I was told that they seem to of got the cancer in the breast with the mastectomy, but it has spread to the lymph nodes so have to have another op on the 6th June to remove them, tomorrow I have to have a whole body CT scan and a radioactive bone scan to see if it has spread anywhere else, I have also been told I will have to have a course of chemo and go onto hormone therapy.  Is anyone able to tell me how long a course of chemo is, how often will i have to have it, how long after i finish chemo should i wait to travel, had plans to go to Bali at the end of July. Sorry for the essay lol, any advice etc will be very much appreciated..... Thank you in advance... 
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Comments

  • Sister
    Sister Member Posts: 4,960
    Hi @Schwen, Firstly, welcome to this site - you'll get lots of info and support here.  Treatment isn't a one size fits all and your oncologist will tell you more when you have your first appointment.  For me, chemo didn't begin until the surgeon cleared me as recovering from ops which was approximately 1 month from second surgery. I had grade 2 lobular carcinoma, a partial with sentinel node biopsy, then a mastectomy with axillary dissection ( 3 out of 8 nodes positive) - OR/ER+, HER-. I am currently going through chemo 4 X AC 3 weekly, then 12 X paclitaxol weekly, then it will be rads and hormone therapy.  Your treatment might be similar or might be different. Talk to your doctor's about your planned holiday. It may be that you can fit it in between.  
  • kmakm
    kmakm Member Posts: 7,974
    Hello and welcome! I am sorry that you find yourself here. I hope you find it as helpful and supportive as I have. You never have to apologise for any question, length or otherwise. Yours wasn't that long anyway!

    Your chemotherapy will probably be about six months long. As @Sister says there's no one size fits all, so we can't be definitive. Some people have some types of chemo once every three weeks or every two weeks. Other types are weekly. Your oncologist is the doctor in charge of this though your breast surgeon should be able to give you a good idea.

    My chemo commenced about five weeks after my lumpectomy, though it was somewhat delayed by Christmas. Mostly they like to crack on with it, especially if you're in reasonably good health otherwise.

    Let us know how you get on. Hang in there, K xox
  • kezmusc
    kezmusc Member Posts: 1,544
    Hi @Schwen,

    Welcome to the forum.  Plenty of warmth and advice always available on here. It's all  so scary and horrible at the start,  Once you have a plan you will feel a little more in control.  Everybody is different with their treatment plan and the way they respond to it.
     
     I had a lumpectomy. re excision for better margins and full lymph node clearance.  There were 5 out of the 24 with cancer in them so got the works as well.  Highly ER and PR positive so am on Tamoxifen.
      I began chemo 6 weeks after surgery. Same chemo regime as @Sister. 4 weeks after that 30 x radiation.  All told from surgery to the end of rads it was about 8 1/2 months.  I did alright with the treatment and most likely would have been able to travel straight away.  It just depends on how you get through and unfortunately nobody can tell until you start.

    No question is too long or too trivial. There is no judgement on here so keep asking, keep talking we all understand how you feel.

    All the best 
    xoxoxox
  • Kiwi Angel
    Kiwi Angel Member Posts: 1,952
    @Schwen - sorry u have to joint us but welcome. I had lumpectomy, partial mastectomy and then full mastectomy in jan/feb of this year - CT scan and lymph nodes clear. Had 4 x doses of TC chemo 3 weeks apart starting about a month after surgery ehich I have just finished and will be going on hormone tablets too. Your oncologist will be the one to decide what your course of treatment will be. Sending u big hugs xoxoxo
  • Schwen
    Schwen Member Posts: 34
    Thanks everyone for the heads up, I have my oncology appointment on the 19th of June so will probably have most of my questions answered then, today I had my contrast CT scan of my body, and Nuclear bone scan, my poor left arm is just about had it now, because they can no longer use my right arm after the mastectomy, since the 9th May i have had 6 different Cannulas in, my veins are shitty now lol, and each time i have a Cannula put in it hurts more and more, especially when they move it around trying to get the vein....Just wish it was all over, so i can get on with living....
  • Zoffiel
    Zoffiel Member Posts: 3,372
    @Schwen if your veins are already crap, get a portocath. It's a monster idea, having a creepy little box under your skin, but it works. Well, they usually work. No stabbing or jabbing and you have both hands free during treatment. This stuff sucks, but some technology can help. Marg xx
  • duxx1234
    duxx1234 Member Posts: 128
    @Zoffiel  I totally agree! Best thing I ever did was have the portacath inserted.  After having an axillary clearance as well in my left arm and then a cellulitis infection which meant four days in hospital on an IV drip, I had four cannulas inserted in four days.  It was so very painful as the veins kept collapsing.  The portacath makes blood tests so much easier too @Schwen. Good luck. M
  • Sister
    Sister Member Posts: 4,960
    @shwen I have a love/hate relationship with my port.  I loathe the thing and can't wait for chemo to finish so I can have it taken out.  I love it when I only have to have one small jab through the skin for everything at a treatment and know that my veins are thanking me.
  • SoldierCrab
    SoldierCrab Member Posts: 3,445

    Below are a couple of links to help you find your
    way around the forum and also how to find a breast care nurse and how to order
    a MY journey Kit if you haven't got one yet. 




    It can be a a whirlwind when we first get a
    diagnosed.... Breathe and take it one step at a time. 



    The what and how thread.

    http://onlinenetwork.bcna.org.au/discussion/14879/the-what-and-how-thread/p1 

    Breast Care Nurses

    https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx 

    My Journey Kits and other
    resources. 

    https://www.bcna.org.au/resources/

    BCNA Helpline 1800 500 258

    If you have any questions, concerns or require any further information
    or support please call 1800 500 258.  The Helpline is open Monday,
    Wednesday and Friday from 9 am till 5 pm EST and Tuesday and Thursday from 9 am
    till 9 pm EST.

  • Schwen
    Schwen Member Posts: 34
    Hi all, just following up with the latest update, had the scans done and also had my lymph nodes removed last week, all going well the drain will be out tomorrow, had my first oncology app yesterday and walked out more confused then i walked in... she agreed i will need a port as my viens are shit, but to do that it means going under anesthetic again, and my partner hasasked if there is anyway to have it without going under general as both ops i have had i almost didnt servive, was put into icu both times, and my partner cant handle the thought of it again, so oncologist is looking into seeing if there is a specialist that is willing to do it under local...the main thing i am confused aout is..... when she first started talking she said that the scans etc i had, came back clear so far,  so hasnt spread anywhere else, and that the chemo was up to me, if i choose to have chemo, but i reccomend you do, that confused me as i thought i had to have it, also they want it to start in 2 weeks, and will be 4 rounds of 3 weeks, and 12 weeks of weekly, i asked whyi have to have chemo and she just said that is my recomendation, also no one seems to be able to give me an answer as to why iha e to start chemo within 8 weeks of my mastectomy if the seem to of got all the cancer, would an extra 10 weeks make such a huge difference....

    One last thing i read somewhere on here a link to a page to do with pathology reports or something anyone know the link please?? Thanks....
  • Kiwi Angel
    Kiwi Angel Member Posts: 1,952
    I had a mastectomy in February and all my lymph nodes were clear as was my CT scan. My oncologist said to me that chemo was up to me as well - she said she would recommend it due to my age, 43, and to prevent recurrence. I decided to go ahead - I didn’t want a “wish I had done chemo” 10 years down the track I’d it came back. What kind of chemo are u having?  It’s a completely individual decision though. It wasn’t the most fun experience of my life but it’s done now and if the cancer comes back at least I feel ok I did everything I could. I can’t comment on the port as they were able to insert a canula with me. Good luck and big hugs xoxo
  • kmakm
    kmakm Member Posts: 7,974
    That your cancer hasn't spread anywhere else is fantastic news! Hooray!

    I think a good doctor will always make it clear what they recommend, but also make it clear that you have a say, a choice. We see a doctor to get help for our condition, so the presumption is that we will take their advice. However ultimately it is always up to the individual how they would like to proceed.

    That your doctor is looking into ways to get around your problems with general anaesthetics is excellent. It sounds like you have a really good ally there in your oncologist! It makes a big difference. Most doctors are happy for you to email them some questions. Most of them understand that the amount of new information we're required to absorb is overwhelming.

    I'm no doctor and I don't know the details of your cancer (size, grade, stage, agressiveness) but my understanding is they like to start chemo fairly soon in case some random cells have escaped and are looking for somewhere else in your body to settle and multiply. The sooner they can nuke them, the smaller they are and the easier and quicker they are to destroy. But do ask your doctor. You could also ring the BCNA helpline and ask one of the nurses, 1800 500 258.

    Let us know how you get on. K xox
  • SoldierCrab
    SoldierCrab Member Posts: 3,445
    @Schwen
     you can ask for  Picc line   @primek can you explain or link for this ? 

  • Sister
    Sister Member Posts: 4,960
    Did your oncologist give you the survival stats with and without chemo?
    I had a similar situation - surgeon is quite convinced that the cancer is gone but chemo and radiation was still recommended for my age (54) in case any rogue cells had escaped.