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ChrisF's avatar
ChrisF
Member
6 years ago

Making The Hard Decisions

BreastScreen Qld used mammogram and ultrasound guided biopsies to diagnose a cancerous lump  in my right breast close to the chest wall which was removed by surgery on 17 May 2019, all went well.  When I went back about 10 days later for the post-op they said they did not get it all as it was unable to be seen on mammogram or ultrasound and I needed to have an MRI and he wanted to check both to make sure there was nothing else lurking in there.  I was booked for surgery on 13 June with the results to be looked at prior to that, if nothing then he would take out the bit missed plus a margin using the current scar.  I heard nothing about the MRI and when i arrived for the surgery i was told that my file said that it was going to be what had been discussed, so I thought great and was relieved knowing that one more surgery plus the radiation and possible chemo and we are on the home stretch.  They were running behind so i waited 2 1/2 hours when the surgeon came to me and described what we both had discussed and i commented that it was great the MRI had showed nothing else, he said he had not seen it but one of his junior doctors had so he went to have a look at it, he came back and said he was sorry but he would have to cancel the surgery as there was a line (mass) in my right breast and he would have to take my MRI pics to the panel the next day and see me on Monday to discuss their findings.  I had been very positive up until then, I was angry and cried myself to sleep that night and the next day was inconsolable, until I decided to get off the couch and get on with my life and not let them beat me.  I was not called with a time for Monday, so Monday morning rang up to check what time and told no appointment had been made and when I explained they made me first cab off the rank for the clinic.  Surgeon showed me the mass which they say is DCIS, I have the option of just getting a mastectomy next Thursday or having an MRI guided biopsy on Friday to see if the mass is cancerous or not and then decide whether to go for surgery to take out the bit they were going to do with a bit more then chemo and radiation or straight to mastectomy and no chemo and radiation.

Does anyone have any wisdom or insight into my situation to help me make this decision?  I am so confused and upset by them upending my world.
biopsy
lumpectomy
mastectomy
surgery

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  • ChrisF's avatar
    ChrisF
    Member
    6 years ago
    Thank you all for your support, the MRI guided biopsy was not as bad as I went for having sedation which kept me calm and lessened the stress and pain of the procedure, still a daunting test but went well, he took 6 specimens so they have plenty of material to look at so just waiting to hear the results.  Had a wonderful weekend, went to the local race meeting for a couple of drinks and social outing with some friends, just for an hour or so, Beefies pie for lunch by the river with my husband, lovely to listen to the river while eating some junk food under some trees.  Restful day on Sunday, did some baking.  Today, had an early coffee/hot choc with a friend who works away and has been very worried as this is the first time she has seen me since before the first operation.  So I feel emotionally uplifted and ready to face this week whatever it holds and have so much amazing support which is the key to all of this journey for all of us.  Together we can face anything life throws at us.
  • lrb_03's avatar
    lrb_03
    Member
    6 years ago
    Hope all went well today with your MRI/biopsy. 
    Rest, relax & recover over the weekend
  • jennyss's avatar
    jennyss
    Member
    6 years ago
    Dear @ChrisF , I'm glad you're getting better attention now - what a muck-up!*.  

    from jennyss in Western NSW

  • EAA's avatar
    EAA
    Member
    6 years ago
    Dear Chris F. Go gently, until you feel safe and satisfied. 
    I endorse all the above comments. I chose Mastectomy for my tumours mainly because of family history . I had Chemo but avoided radiation because of the Mastectomy. Although not conclusive until 
    you have a pathology report from your chosen surgery, they may have an idea of the type of tumour if it is ductal or lobular and the size if it.  They usually avoid this but you can ask them for a guesstimate! They’ll have some hunches. I’d also ask them to make sure they get all the tumour with wide margins as you don’t  want repeat surgery.. it’s all too human. 
    I just want to say, it’s all ok. Daunting at first but all will be well..
    Cry the pain.. it helps, do a bit of walking if you can.. it helps.. 
    oh! And give yourself lots of treats! Along with family and friends
    we on  this forum are all travellers with you. 
    Hugs.. 

  • ChrisF's avatar
    ChrisF
    Member
    6 years ago
    Thank you all for your great comments, has helped.  I have been lucky to have my wonderful husband drive me so I don't have to focus on driving (don't need an accident on top of it), some of our appointments are an hour and half away at the sunshine coast.  He has been wonderfully supportive and so have my two children (even though one is in Perth), I also am part of a couple of groups of ladies who have also been wonderfully supportive and offered meals, driving and anything else I need or want or I need to do is call them.  Some have also been down the breast cancer road but most of them are over 10 years so some of the information is a little dated but their support has been amazing.  Unfortunately my breast care nurse is away but I got hold of another one yesterday from the sunshine coast hospital and she was wonderful.  I have giving a lot of thought to the information given as once you have a mastectomy you can't go back where as if you have a lumpectomy you can progress to a mastectomy if things don't go well.  I am off to the MRI guided biopsy tomorrow so hopefully get some more definitive information.  They are bringing in the big guns to do the biopsy tomorrow since the mishap with the operation, they have doubled their efforts to ensure I am looked after, so that has been great.  Thanks again to everyone I feel so much better about this.
  • Zoffiel's avatar
    Zoffiel
    Member
    6 years ago
    @ChrisF these decisions are difficult at the best of times when we are well prepared and well informed. It's not something that should be done on the fly unless there are very pressing conditions.

    You are not welded to your current specialist. If you have lost any degree of confidence in them, see  someone else. At least take some time to ask more questions. I can absolutely understand the desire to get whatever it is out of your tit but a week or so will not, realistically, make much difference if they are ambivalent about your diagnosis.

    What ever this is, or isn't, you are likely to be in the system for a while, either in active treatment or under observation. Pick your team carefully--and yes, you can do that to a degree in the public system.  Mxx
  • Beryl_C_'s avatar
    Beryl_C_
    Member
    6 years ago
    Agree with the '2nd set of ears' suggestion. Have you discussed this 'run around' with your Breast Care Nurse? Your head must be spinning so if there's someone who can attend all appointments with you ask them now! Ask them to help you make a list of questions and as this is your life there is no such thing as a 'dumb or silly' question. It isn't a crime to let Drs and others know of your distress - you are not a 'medical case' but a person who's life has become a bit tough. Hugs and best wishes.
  • arpie's avatar
    arpie
    Member
    6 years ago
    I am so sorry you've been given the runaround - having your surgery cancelled like that would have done my head in too - and been very angry & upset at the same time.  

    Do you have someone else to attend your appointments with you?  A 2nd set of ears can be vital in them picking up info that you may miss, in the heat of the moment.  My sister in law has attended most of my appointments & has been a Godsend!  She also asks intelligent questions, that I hadn't thought of!

    All the best with your decision making and take care xxx
  • kezmusc's avatar
    kezmusc
    Member
    6 years ago
    Hi @ChrisF,

    Welcome to the forum lovely.  So sorry they have messed you around so much.  This thing is hard enough to get through without plans being changed and lack of communication.

    Unfortunately no body can make this decision for you.  I expect it's just dependent on how you feel about the mastecomy VS lumpectomy. If your gut is swaying you one way even just a little more then that is probably best for you. Trusting your instincts through this is no mean feat either.  Everything is just so confusing and you will second guess yourself all the time.

    I found the original lump in my lymph nodes.  No mammogram or u/sound could ever detect the primary breast lump, nor could you feel it.  The MRI was the only thing to pick it up.  In saying that though, MRI's are notorious for picking things up that may or may not be anything drastic.
    My decision was easy.  I wanted the lumpectomy unless there was absolutely no other choice. I had no reservations at the time and have not regretted the decision at all. I had two surgeries (one for clearer margins), chemo and rads.

     Some people feel more comfortable with the mx to save worry at a later date. Statistics say that the lumpectomy with radiation are as good as the mx these days.

    It is a difficult choice and I know none of that is particularly helpful in making your decision but rest assured we all understand the fear and confusion along the way.

    Best of luck with your decision.  I am sure there will be others along soon with their stories.
    xoxoxoxox
  • BlackWidow's avatar
    BlackWidow
    Member
    6 years ago
    I'd be insisting on another conversation with the specialist before making any decisions.  You need the correct info to make the right decision for yourself.  DCIS appears to be a bit of a black area for them as to take the 'wait and see' attitude or not as they cannot determine which will turn bad in time.
    If you are a worrier and your breasts are not the most important things for you then go for the mastectomy - get it all over with.
    Was reconstruction mentioned ?  If possible have this at the same time to minimize the times you will be in hospital.
    Is time on your side ?
    Ask ask ask and don't make any decisions until you are comfortable with what is happening.
    You are in my thoughts.