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Just starting the journey - so many questions!

colthulcolthul Toowoomba, QLDMember Posts: 13
I have just been diagnosed with grade 3 invasive ductile carcinoma. The tumor is 2cm x 2cm and the hormone status hasn't come back yet. I saw the surgeon the next afternoon and he has sent me straight away for a PET scan which I am having tomorrow morning. I have read lots of posts and comments about bone scans and CTs but not PET. I'm a bit worried about why he has chosen to go down that path as it seems so different to many other stories.
I am a planner so not having any idea of what is going to happen and in what order is messing with me big time! My husband is FIFO and away at work (left the day before I got my results). He will be back on the weekend thank goodness and I am really lucky to have amazing friends who are really supportive.
I am trying not to get too scared and read too much but it is very very hard! I just need to try and have patience and trust the process I guess.


  • Cath62Cath62 Brisbane Member Posts: 787
    Hi @colthul, sorry about your diagnosis. It is all such a shock at the beginning and so overwhelming too. It just takes a bit to get that treatment plan in place and once you have that, as a planning person you will feel better and you will feel like you are getting somewhere. 

    Each doctor is different and every breast cancer is different. Once your doctor has the information they need  they will start treatment. That should not take too long. Can you ask your doctor why they want the PET scan. These scans are like body scans to check for any other issues. I guess your dr wants to look at the whole body and is being extra cautious. 

    My cancer was a grade 3 cancer too, hormone positive and her2 negative. I got this information from my initial biopsy. Within 2 weeks I had surgery to remove my 2cm cancer. It was invasive carcinoma too.  (Don't get too hung up on the word invasive, doesn't mean it has spread necessarily. It is most likely very treatable. ) After my surgery, which found no lymph involvement and clear margins around the bit removed from me, I started 4 months chemo. Chemo for me was basically because of that high grade. I then had radium for 1 month and now tamoxifen. I was diagnosed in April last year and finished radium at the end of November. I feel good now. This was my treatment but everyone is different and cancer treatment is tailored specifically for you.

    It is great you have support and please don't hesitate to call it in. Any treatment might make you weary so help at home is great. Another tip is exercise, even walking. It clears the head, keeps you strong and will help you during treatment. Keep busy as it will keep you distracted and help pass the time in this initial phase. 

    When do you see the surgeon again? Do stay in touch and update us on your treatment plan when you get it. This online group is so wonderful and very supportive. It's great you reached out.  Sending you a big hug 🌻
  • noosa_blue150noosa_blue150 Buderim QLD Member Posts: 179
    I think having a PET scan seems fairly routine now, where oncologist wants to establish a baseline before treatment ( establish if any secondaries present in scan or not ). I had a 5cm tumour, was triple positive , and had that scan - no secondaries found. Phew. Then started on AC chemo,followed by taxcel chemo, then lumpectomy (lymph nodes came back clear) radiation and now kadcycla/T-DMI chemo because tumour didn’t completely regress/clear at surgery. I’m also on A1 hormone tablets now. This last chemo targets the HER2 cells that may be around -better results for me than herceptin alone . 
    Good luck with your journey - ask lots of questions about your cancer type so you understand that aspect of it as it can dictate treatment options . 
    Agree with cath62 - exercise , even just walking, when you can will,help,you cope with chemo better .
    if you have access to a Breast care nurse at your hospital do use them, they’ll help,you negotiate the system and explain processes to you .
  • arpiearpie Mid North Coast, NSWMember Posts: 6,122
    SO sorry to see you here, @colthul - to the club that no-one ever wants to join!  @Cath62 has pretty well covered it all beautifully ... and agree that keeping busy in between appointments etc is the way to go .... I hope you have someone to take with you to your appointments as a 2nd set of ears too, for support and maybe even act as a driver!  I recorded all my early appointments too, as it is easy to miss bits when under a bit of stress.   My BC was invasive too (you can read my story on my profile), but was caught early & I dodged the chemo bullet, just having surgery & rads & tabs ...... 

    Where abouts are you? (City/Town). You can add this to your profile - it can be comforting to find members nearby who, in non-covid times, you could meet up for a coffee & a chat.  Many of us have made wonderful friends on the forum, even from interstate.  Terrific that your hubby will be back on the weekend xx

    Remember to breath ..... and just take one day at a time & DON'T use Dr Google as so much of the info is irrelevant to your condition & every BC is treated differently too.  Put your trust in your Medical Team .... they will be discussing your options after your surgery/full biopsy results are in - and will be wanting the very best outcome for you .... so time to pull the big girl pants on ....  wishing you all the best. xx

    Check out my post here - it covers a lot of info on the blog for 'newbies' & @iserbrown has added some more links as well .....

  • Julez1958Julez1958 SydneyMember Posts: 402
    Hi there
    it is a whirlwind of tests and scans at first and a lot to get your head around, but you have come to the right place on this forum as we have all been there in one way or another.
    I was diagnosed in August last year and ended up having a mastectomy and radiotherapy, although I didn’t need chemo.
    I was grade 2, ER positive, 5.5 centimetres.
    I did have a PET scan and it showed something suspicious in my thyroid and a biopsy confirmed a tiny cancer in my thyroid that was completely unrelated to my breast cancer ( ie: not a spread of the breast cancer which is stage 4).
    I was of course completely freaked out but my Doctors were amazing.
    the breast cancer had not spread to my lymph nodes and a few months later I had my thyroid removed and got the all clear.
    It is most unusual to find a second cancer ( or a spread of the breast cancer- a metastasis) from a PET scan but I’m glad it was found otherwise it would probably have presented as a lump years later and ruined another year of my life!
    My three pieces of advice are:

    1.Take someone with you to all important medical appointments as you won’t take it all in.

    2.Take things one step at a time.

    3.Be kind to yourself and be a little selfish if you have to , the disease affects everyone differently but it is a tough time especially in the beginning, and it’s ok to cry.
  • HallaHalla Travancore, MelbourneMember Posts: 176
    I had a pet scan (I think!)that found nothing else throughout my body except a nodule on my lung, but they said they just needed to keep an eye on that. So 3 months later, yesterday in fact, I got the result that it had not grown- and no further action required! Yeay! 
  • Julez1958Julez1958 SydneyMember Posts: 402
    Hi @colthul , one more thing, if you are a planner ( so am I) you may find the Liz O’Riordan book referred to in one of the posts at the top of the page useful.The author was a breast cancer surgeon who got breast cancer.
    I actually found it in my local library .
  • arpiearpie Mid North Coast, NSWMember Posts: 6,122
     And Liz o’riordan’s story is well worth reading too, as she explains how unprepared she was for the actual effects (mental and physical) how her BC diagnosis and treatment affected her.  Her blog is definitely worth a read.   Pretty well any ‘feelings” that we had - she had (plus some!) 
  • Lisa1407Lisa1407 Elwood, VictoriaMember Posts: 244
    @colthul, Hopefully you have had your PET scan by now and have good news. As some of the ladies above have stated, a PET scan is the gold standard imaging technique used initially to stage breast cancer (ie to see if it had spread beyond your breast). Sometimes, the breast surgeon will not think it has spread and therefore doesn't order a PET which is what happened to me. I had a friend at the appointment with me and she insisted that he refer me for a PET. Low and behold the cancer had already spread to pelvis making me stage 4. I know have PET scans every three months (combined with a CT scan) to check on progress. I haven't had a bone scan since I was diagnosed. I am a public patient and therefore doctors order PET scans whenever they want. However, if you are a private patient, a PET scan is expensive and you have to pay for some of it so doctors are more reluctant to order PET.
  • colthulcolthul Toowoomba, QLDMember Posts: 13
    Hi all, 

    Thank you for your suggestions and experiences. I took some time out over the weekend to read Liz O'Riordon's blog, almost finished. I found it really interesting and gave me some perspective.
    I got my results back this afternoon. PET was clear and only showed the mass in my breast but receptors came back triple negative. Apparently this (along with the size - surgeon feels it is bigger than the US says)  means I still get to ride the chemo train. I am now waiting for an appointment to see the oncologist and then we will decide if it is surgery first or treatment first. Personally I really want this thing out of me ASAP but also know that shrinking it might save my breast a bit in the long run. 
  • arpiearpie Mid North Coast, NSWMember Posts: 6,122
    Great that the PET scan was clear @colthul- Bugger about the triple neg tho!  All the best with your Onc appointment ...  I hope you can have the surgery sooner than later, but if you need to have the chemo for a better end result .. I guess you will just have to trust your team xx. take care 
  • iserbrowniserbrown Regional VictoriaMember Posts: 5,033

    A link to the BCNA website that may help you understand and formulate questions for your next appointment 
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