Newly Diagnosed

Mez_BCNA
Mez_BCNA Administrator, Staff, Member, Moderator Posts: 1,144 ✭
edited April 2023 in Newly diagnosed
Moderator moved discussion for member @manzganz from the activity section to the main forum:

manzganz
Hi all, I was diagnosed with blood clots in my lungs in January this year and my GP sent me for mammogram and CT on my pelvis to check my malignancy markers to determine how the clots were formed.  I was advised that I had a 6cm mass on my ovary and an unusually enlarged uterus and was booked for a full hysterectomy on 16 March.  I was then also diagnosed with an ER+, OR+, HER-2 negative invasive lobular carcinoma in my right breast on 9 March.  Due to the cancer diagnosis, the gynae advised to continue with the hysterectomy and the pathology was good thankfully.  I then had a partial mastectomy and 4 lymph nodes removed on 28 March, 2023.  The lymph nodes were all benign too so I am also extremely grateful. My recovery for both surgeries has been long and slow but I am finally feeling more like myself.  I start 4 weeks of radiotherapy in 2 weeks time and will then go on oestrogen blocking medication after I am finished which is yet to be determined. I am on blood thinners for my lung clots and after a recent test have been told they are yet to reduce in size but at least they haven't grown. I am 53 years old and before this enjoyed great health and fitness. 
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Comments

  • Cath62
    Cath62 Member Posts: 1,482 ✭
    Wow you certainly have had a tough time @manzganz. I had big recoveries from multiple surgeries over several years. It does take time to get over all the wounds and anaesthetics etc. I had chemo, radium and now hormone blockers. My cancer surgery was in 2020 and so too radium and chemo. I had 2 more surgeries related to my breast cancer in 2021. I started the hormone blockers in  November 2020. 

    Radium was a little easier for me than chemo. Talk to your breast care nurse about mepilex or the cream that can be used on that radium area to minimise any discomfort. Drink lots of water too and if you are up to it do some gentle walking. It all helps. I had 4 weeks of radium and I  did get a couple of areas that were more red that the rest. One area that was a little painful was where my lymph node removal scar was. I guess it is a very tender area of the body so take care of the scar lines.

    In terms of hormone blockers some people have no problems with side effects so hopefully you are lucky there. I started on tamoxifen and was going well for 18 months and then experienced some side effects so my oncologist changed me to Letrozole and I have been ok since then. My message there is always let your dr know any issues because you don't need to suffer and there are other options.

    Good luck with your radium treatment. I hope it goes really well for you.
  • manzganz
    manzganz Member Posts: 2 ✭
    Thanks @Cath62.  It is so nice to feel like you are not alone on this scary journey.  I feel like I have only been able to process each stage as it comes up and not look too far in the future.  So radio in the next fortnight and once that is over I will tackle the blockers as they come!
  • Cath62
    Cath62 Member Posts: 1,482 ✭
    That's the way  one step at a time. Your younger than me. I was 58 at the time of diagnosis. You can do it. You know @manzganz you will be amazed at how strong you really are. We all are strong and amazing to get through all this stuff. I am glad you reached out here. It is a great support.
  • manzganz
    manzganz Member Posts: 2 ✭
    I am appreciating how supportive, useful and informative this page is @Cath62 - thanks for your lovely message.  I think this community is a really important part of our processing and I am only at the beginning! I am not feeling strong at the moment so thankyou for reaching out. 
  • arpie
    arpie Member Posts: 8,197 ✭
    SO sorry to see you join our 'exclusive' club, @manzganz ... the one NO-ONE queues to join!   Ask away ANY questions or topics & we'll do our best to give you honest, helpful answers. xx

    Golly Gosh - you've certainly been 'thru the mill' .... great that all your results have been good.   Mine is lobular too (you can join the lobular private group if you like - we try & post stuff that is relevant to Lobular ...) 

    @Cath62 has given you wonderful advice & tips xx 

    Feel free to jump onto this post for lots of info on the forum - (even fun bits) along with the serious bits - 
    there's also some tick sheets down the bottom that you can download - & sort of 'self assess' yourself between appointments (which I would suggest that you record on your phone, as it is easy to miss bits at the time.)    If you add your 'general area' to your profile - we may even have members nearby who you could catch up for with a coffee when you are up to it.  Many of us have made firm friends on the forum & some meet up 'in real life' too ....   You can share pics of your garden, your pets, your art & craft ..... or add to the 'funny file' as I reckon we all need a good laugh now & then. xx
    https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

    All the best with your Rads - if you notice any 'skin breakdown' or have areas of concern, always mention them to the Rads nurses (they usually check with you before they start the next session ....)  And remember that the skin will continue to feel 'warm' for some weeks even after the treatment stops.  You'll feel it 'warming up' in the first week or so, I reckon, too.

    In the mean time, just keep doing what you love doing - or even give something new a go ...  like you, I was 'fit & healthy' before this darned lump turned up ..... 5 years later, I am still enjoying myself, but slowing up a tad now, as I near 70 ... next month!  It doesn't stop me getting out in my kayak, fishing tho!  ;) 

    take care xx

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