Unsure how to feel since diagnosis in October 2019

PampaPampa RockhamptonMember Posts: 4
edited December 2019 in Newly diagnosed
Hi all

I guess I can say my journey began in October 2000, I was pregnant with my son and on the same day my family found out my Mum had breast cancer, sadly we lost her in April 2014.  Ironically I was diagnosed with Breast Cancer on the same day she was some 19 years later.  I had my annual ultrasound but knew in my own mind going into my appointment what the outcome was, and as I watched my scan (yep shouldn't have done that but my Mum was a registered nurse and I learnt to much from her I guess) I saw this massive shape and knew.  I went to my GP the following day for the results, yep that day was a blur the words were Carcinoma, Cancer and I'm so sorry.....

To date all I know is that I have a massive lump in my left breast which has literally taken over 50% of my breast, and lucky me I have had one sneaky one get away and is in my lymph node.  2 weeks ago I am told one thing from my Dr following the MDT meeting, then last week told by another Dr following last weeks MDT meeting that my Bone Scan showed a "Bone Island" but just in case well send you for another scan this time a PET scan which was on Monday.  Anyhow this Dr informs me rudely I might add, "If it's in your bone there's not a lot we can do for you, surgery would be a waste of time so well sign you off from the Specialist Dept and wait to see what oncology do.  Needless to say I wanted to ask this Dr if he had any training on how to speak to patients as his manner is and was disgusting, but I just left my appointment feeling rather unsure and still am to be honest.

I have no idea as to what stage or grade my cancer is all I have been told is I have Ductal Carcinoma in Situ of intermediate nuclear grade.  Yep no idea what all that means.....

And I don't see the Oncology Dept until next Thursday and I guess am feeling somewhat lost.

I am a number to 3 not so young humans my daughters are 26 & 16 my son is 18 and I have a 1 year old granddaughter so life I guess is not so great at the moment.

I have an appointment tomorrow with my GP to discuss how annoyed I am with the shit ass Dr and his manner of leaving me hanging I guess is the only way I can put it.

Any advise would be helpful xx



Comments

  • AfraserAfraser MelbourneMember Posts: 2,687
    So sorry you are in this position but now’s the time to remind everyone that you are the patient and are entitled to some civility! Your appointment with the Oncology Department should help clarify your diagnosis and possibly your recommended treatment. Your children are old enough to both understand and to offer ways to be helpful. Let them do so. There are many on this site with advanced cancer who get a great deal of benefit from treatment. And you may not of course be in that number. Day by day is the way to go at this stage - don’t assume anything, seek as much clear information as you can. If you can, take someone with you to medical discussions, two heads are better than one. Things do become clearer as your treatment plan is developed and many people on this site will
    be happy to advise and help. Best wishes.


  • PampaPampa RockhamptonMember Posts: 4
    Thank you Afraser
  • CRMCRM MelbourneMember Posts: 58
    Hi @Pampa   It's a really scary time for you and I wish you all the best.  I am sure it's even more difficult as you have witnessed the worst possible outcome with your mother but try to remember no two cancer cases are the same and right now, you have every reason to believe you can beat this xx
  • Brenda5Brenda5 Burrum Heads, QldMember Posts: 2,367
    Sorry to hear of your diagnosis but first I will say, you are not your mother and treatments have come a long way since then.
    Do you have a breast care nurse to go in to bat for you and towel some of these doctors up? https://www.mcgrathfoundation.com.au/get-support/find-a-nurse/
  • NefertariNefertari Member Posts: 239
    @Pampa, good news re your bone scan. What an insensitive Doctor, he definitely need some more training.  Good luck with the chemo next week x
  • Brenda5Brenda5 Burrum Heads, QldMember Posts: 2,367
    One step at a time. Try not to dwell on the entire treatments or it will overwhelm you. Chemo is doable and we are all here to help you along.
    I would suggest you take someone with you every time to be a second set of ears and to keep an eye on you should the chemo nurse step away at any time. Also someone to go and do the mundane things like food shopping is a big plus.
    Drink lots of water or any liquid if you don't like plain water. You want to flush the rubbish out and stay hydrated. Also you will need to gentle walk even if you feel awful. Take someone with you then as well in case you get light headed. I never had any real exercise trouble but I had someone with me, just in case.
    The hair thing is tough to endure but each stage after the initial omg time, you sort of adapt and it will grow back, sometimes a bit odd for a while. I have dead straight hair and after chemo it came back in the most wonderful perm you have have ever seen and I didn't have to pay a hairdresser for it either. It only lasted a few months though and now I am back to straight hair again.
  • BewilderedButHopefulBewilderedButHopeful Member Posts: 22
    Hi Pampa,

    Sorry to hear your news. I'm still waiting for a treatment plan six weeks after my second surgery. I should know more at the second oncologist appointment tomorrow. The MDT meetings are only every fortnight, so that's the hold-up. I was surprised at the lack of communication and coordination between doctors/departments, but felt reassured after I emailed my questions to the Breast Care Nurse, who said she would be at the MDT meeting. That helped a lot, and I feel less anxious knowing the Breast Care Nurse will be an extra pair of ears and eyes to help me understand what's happening next.

    I hope you can get that help too. My surgeon allocated me someone, but if yours didn't:

    To find a breast care nurse near you, visit the McGrath Foundation’s website . Under ‘Get Support’, you can search for nurses in your area simply by entering your postcode.
    https://myjourney.org.au/article/2187
  • PampaPampa RockhamptonMember Posts: 4
    Hi BewilderedButHopeful,
    I have been allocated a breast care nurse actually 2 of them but they are difficult to get hold of.  I have results back from my PETscan and thankfully was good news, I had one of the doctors call me on Friday to tell me, as I did make a complaint about the way I was only given half answers at my last specialist appointment.  I haven't seen nor spoken to either of my breast care nurses since my last appointment almost 2 weeks ago, and some days feel like I'm travelling on this road alone although not alone but still left hanging. 

    Tomorrow is my first meeting with Medical Oncology, I do no that I am ER/PR + HER2 - not sure if that's a good or bad thing, my mum was ER/PR- HER2 positive and although completely different, I now know how she felt with the waiting game.  My GP has said that I have a good cancer but what cancer is good cancer when it's already confirmed in 1 lymph node and no further ahead of anything and left to wonder?  I will see what tomorrow brings and hopefully will have my long awaited answers I'm looking for, but will update my journey thus far and keep my spirits positively high, and hope that the outcome is good.

  • AfraserAfraser MelbourneMember Posts: 2,687
    A good cancer is a relative term, it can mean slow to develop, or responds well to treatment or a number of other things. Sure, no cancer would be better but that’s what treatment is for. I had one malignant node but, touch wood, no evidence of disease six years after my active treatment ended. Looking forward to tomorrow and being optimistic helps enormously with dealing with treatment and indeed living your life well. Best wishes. 
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