Could really use some inspiration from a positive experience

EastmumEastmum Member Posts: 32
Hi amazing  people - I'm new to this site and forum and so appreciative of all the information on here and the generosity of so many incredible people who have shared their stories.

I'm right at the beginning of things - just been diagnosed with invasive lobular carcinoma in both sides - ER/PR +ve, HER2 -ve - looks like I've probably had this for a year even though I've always had regular, comprehensive mammograms and ultrasounds. Very thorough investigations (2 mammograms, 2 ultrasonds + MRI) on large palpable mass and some architectural distortion 12 months ago still came up as nothing to worry about (suspected scar tissue from breast reduction 30 years ago) but further changes and architectural distortion got much worse over the year so off I went for repeat scans and this time it was obviously breast cancer. Lymph nodes look clear on ultrasound (no guarantees I know) and suspected low grade, stage 1 or 2 but again - won't know until they get in there. 

Haven't even had a proper post-biopsy consult with my Breast Surgeon yet because he's away until the end of the month but I'm about to go for staging scans - CT on chest, abdo, pelvis and full bone scan - and these freak me out so much more than the Breast Cancer diagnosis - is that weird?

Are there any stats out there on how many people have metastasized breast cancer right from the start? Do things like osteo-arthritis, old fractures, other inflammations show up as suspected secondaries? LIke, can you get a 'false positive' for mets? Or does Breast Cancer mets look very unique on these scans?

Right now all I can think of is the persistent cough I've had for a few months, the niggling pain in my lower back, headache and knee pain! I'm also quite overweight so that must contribute to some of those aches and pains. I've prepared myself for anything they will tell me (if you can ever really be prepared) but I'm trying hard not to 'write the chapter before it's happened' - as a very wise friend recently told me.

I don't want to give myself any false hope and I know I have to be prepared that there's always a chance they'll find mets but I'm obsessing over it a bit too much and I would really find some inspiration and it would help to get through the next few days if anyone out there might have also had aches, pains, coughs etc and ended up with clear staging scans at the start ??

Thanks again to all the 'warriors' out there. I hope that one day when I'm on the flip side of all of this, then I can also be of help and inspiration to someone :)

Eastmum 


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Comments

  • LMK74LMK74 BrisbaneMember Posts: 599
    Hi @Eastmum, sorry you have had to join us, but welcome. The body scans are standard to check if cancer has spread. I know how stressful the beginning is and all the what ifs. Try to just get through each hurdle as they come, easier said than done I know. You will find plenty of support here from all the amazing people. Arthritis I think shows up on bone scans and I would think looks different to mets. I'm sure someone else will be able to answer your questions. 
    Lisa.
  • SisterSister Adelaide Hills, SAMember Posts: 324
    Hi @Eastmum.  I also have ILC and was diagnosed 6 weeks ago after a screening mammogram.  I was incredibly lucky (?!) that the mammographer picked up that something didn't look right.  My initial diagnosis was 2.5cm tumour with no likely node involvement.  I had the CT scans which are, I agree, scary, and for me, came back clear. (I'm surprised that they could get a clear scan as I was shaking so badly)  However, with surgery my tumour turned out to be 4.5cm without clear margins and with 3/5 lymph nodes involved.  I went to see my oncologist for the first time the other day and when he started going through my CT scans, I immediately thought the worst and that he was going to say that they'd missed something, but yes, arthritis does show up on the scans so those achy knees and hips and back are just that.  Interestingly, he said that he could barely pick the cancer on the scan.  ILC is a bitch on wheels.  The only thing that has got me through all of this so far is the knowledge that whatever it is, it is and not knowing is going to change that.  Only knowing what's there can change it.  Try not to Dr Google, take support from your family and friends and the lovely people on this network.  If you're really not coping, try to access counselling from your local Cancer Council.  I only got by in the first few weeks with Tamazepan and Serepax - at least I managed to get a couple of hours sleep without the mind spinning.  Gaye
  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 1,636
    hi @Eastmum
    when it is early stages of diagnosis we are all in a spin. I can't help with information on  invasive lobular carcinoma in both sides - ER/PR +ve, HER2 -ve   I had TNBC you will soon learn the differences as you come on here and chat with us. 

    why not give the Helpline from BCNA a call 
    The phone number for the BCNA helpline is 1800 500 258.

    Helpline hours are 9am to 5pm on Monday, Wednesday and Friday
    and
    9am to 9pm on Tuesday and Thursday.
    Calls to the helpline are free of charge when made from a landline and charged at standard rates when made from a mobile phone.

    you might also like the following links to help you find your way around the forum. 

     

    The what and how thread.

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

     

    Breast Care Nurses- do you have a Breast Care Nurse? you can see where your nearest is and call them if you have not got one yet.

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

     

    My Journey Kits and other resources.  Have you ordered your kit yet?  

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


    Breathe, come on here ask questions and I am sure others will give you some information that will help you through this time. 

    Soldiercrab 

     

  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 1,636
    @Mishie
    @Dany
    @Jane221
    @jjshep
    Can you ladies answer some of the questions that @Eastmum ; has  I see from previous posts you all have gone through this type of cancer. 

    thanks 
    Soldercrab

  • MollygirlMollygirl Brisbane Member Posts: 205
    Oh @Eastmum, I'm so sorry you are here. But, you'll get lots of support here. 
    I was diagnosed with triple negative grade 3 tumour last April. Had lumpectomy, nodes out (clear) five months of chemo the in November bil mastectomies no recon, no radiation. I'm now in recovery still and plan to return to work end March. 
    Can I just say the early days are bloody horrendous. Not knowing what's going to happen, makes you feel like your world is spinning out of control. So... Back up the truck. Try not to look to far ahead. Just focus on each next step, scan, consult etc. it's too overwhelming to look at everything as a whole. 
    Scans, follow the preparation advice exactly, try and focus on being as calm ( yeah I know right!) during your scans for the best clearest pics. 
    As soon as you get a breast care nurse discuss everything with her. They are a wonderful support and have so much knowledge. 
    And, of course come on here often, ask us lots, we are here for you. Biggest, biggest hugs. Bec xxoo

  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 1,636
  • JoannieJoannie Member Posts: 337
    @Eastmum ; when I was diagnosed in November 2016 with HER2 positive and in lymph nodes on the right breast, and the left with DCIS. I was informed my results would be with my GP the next day.  I followed up with my GP and mentioned then that on reflection I had nagging pain in my lower back and just put it down to some existing osteo arthritis.  She quickly sent me to have scans etc on my lower back to rule out any possible mets in my back. I also had mild headaches on the left side, and that was checked also.   My results came back clear, I was then able to relax somewhat until all the necessary biopsies and tests were done for my breast cancer.  Can you ask your GP to send you for tests in the meantime, and also for your knees since you mentioned pain there also. Perhaps you can push for those tests to relieve your mind a bit.  
    It is daunting in the beginning, but know that you will get through this, one step at a time, and we are here for you.
    Best wishes.xo

  • kezmusckezmusc Member Posts: 131
    Hi @ Eastmum.

    Welcome.  The beginning is the worst.  The waiting and endless waiting is unbearable.  I do remember being too afraid to even ring my dr for the CT results. Yes, they freaked me out more as well as I knew the thing had already got to my nodes up front. .

    I had no breast lump that you could feel or that came up on 2 x mammogramms and 2 x ultrasounds.  The lump I found was in the lymph node. (there ended up 5 positive ones) .Biopsy of that lump came back "highly suspicious for metastatic cancer"  That was the first result I got. That was a friday afternoon.  Shit! I hit dr google, BIG MISTAKE  and had myself buried by that afternoon. 

    But guess what?  All is well.

    So a CT, bone scan, breast and brain MRI and a couple of core biopsies later we found the culprit, all scans were good and no mets.  Dodgy bone thingys do show up on the bone scan.  Degenerative changes, old lumps and bumps etc.

     Lumpectomy, axillariy lymph node clearance, chemo to catch any strays, and radiation later all is good.  15months since DDay and 12 month scans are clear..

     It's a thing that is so different for everyone, there are similarities, but until you know what your dealing with the worry is endless.  Once you have a game plan you feel ,somewhat, more in control I guess.

    One day at a time, one step at a time.  Everyone is here for you, we know how you feel.

    Keep in touch
    XOXOXOX
  • TonyaMTonyaM Member Posts: 2,485
    Hi Eastmum,
    sorry you’ve joined us but big welcome.You are at the super anxious stage and there’s no getting around it.I can only suggest a drink to calm the nerves and lots of cupboard cleaning or other such distractions while you wait.Finding metastisies straight up is less than 10% but I can’t remember the exact stat.Arthritis shows up quite differently to cancer on scans.If you have no lymph node involvement and your cancer is  Hercept -ve then the odds are very much in your favour.Still,it’s very hard to be positive at this point and I think it’s the body’s natural defence mechanism to prepare for the worst
    We all do this and it’s quite normal. I had breast cancer back in 2003 and then again in 2010(same breast and still early bc).I’m still here,all clear and doing well.I still get anxious prior checkups-I just keep busy.Keep posting on this network as it helps to know you are not alone.Big hug. Tonya xx
  • EastmumEastmum Member Posts: 32
    Thanks so much @LMK74 @Sister @SoldierCrab @Zoffiel
    @Joannie @kezmusc @primek and @TonyaM
    for your encouragement, information and advice. Yep, the waiting is the absolute pits - but you're absolutely right, it is what it is and whatever it is, I'll deal with it! 
    Here's to being a wArrier with an 'a' not an 'o' :)




  • AfraserAfraser MelbourneMember Posts: 1,273
    I didn't get too nervous at the start - there's a great deal to be said for not knowing much as you can't worry as much!! - but I got ridiculously nervous and full of unexplained twinges and odd sensations every year before my annual ultrasound, mammogram etc. It's hard to stop the "what if....". I finally got over it in my fifth year - not that I was blithely indifferent, but I finally felt I knew what to do if the results were not good and how to handle it, and the dread almost vanished. Fear of the unknown is very hard. The known can be a trial and endurance race, but you know it for what it is. Best wishes - your "warrior not worrier" is a great line and a powerful sentiment. 
  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 1,636
  • EastmumEastmum Member Posts: 32
    thanks @Afraser - really appreciate your comments and @SoldierCrab I'm going to print this out and put it up in my office - Love it! 


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