Time to process

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JenD
JenD Member Posts: 18
Hi All, my intro post.  Such a roller coaster of emotions and processing suddenly going from perfectly healthy to not!
I had a Diagnosis 22/12/23 IDC with 2.9cm tumor and lymphnode involvement from BreastscreenSA.  ER and PR +, Her -.
(Xmas is harsh to get such news, both in the slow down of services and in telling nearest and dearest)

It has taken a while (necessary tests, scans and byopsies), but looking at treatment beginning Wed 28/2/24 with surgery (partial masectomy,  axillary node clearance). Then most likely chemo, radio, hormone therapy.  

Overactive imagination has been a problem, general stress/anxiety, and not sleeping well.  It is settling a bit now, as  Ive met surgeon and feel comfortable I am in good hands, met with Breast nurse (and now have a bright pink pillow and lovely accessories pouch for fluid tubes). I am participating in a clinic trial that I meet criteria on that I decided yes to assist.
I am going ahead on a planned and booked holiday next week  (which several family are also going), the surgeon was supportive on proceding with this as mental health positive.  Then it is full steam ahead!   

I am fortunate to have supportive family, and some great friends, some who have had a bc journey themselves.   
Was concerned about work for a while, but Ive let the h.r. depts know (two jobs) of upcoming medical, and am scaling back for as long as I need (casual events hospitality -  high energy, physical and customer facing, they will still be there when I can manage again!)

So I think I am in about the best positive I can be for now!  Not keen on whats to come,  but ok to get on with what needs to be done!       Thanks for reading, and thanks to all those sharing posts and info themselves - it has helped.
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Comments

  • Katie46
    Katie46 Member Posts: 128
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    Hello @JenD, it is a shock to try and process something that is totally unexpected. I think I have a similar diagnosis. 2cm IDC with 1 lymph node involved, stage 2 grade 3 cancer, diagnosed in November. A lump was found on my first breast screen, no symptoms, so it all felt a bit unreal for a while, particularly as I felt perfectly healthy and fine. I had a lumpectomy and 3 lymph nodes removed, 1 involved, but no further clearance required. As the cancer is grade 3 and a higher risk for recurrence chemo, radiation therapy and hormone therapy is my road to travel. I too have had great support from family  friends, work and a great team of people, from surgeon, oncologist, nurses and anyone else I've come in contact with. I've just finished my 4th round of AC treatment, I've been luckily to have fairly mild side effects, and no nausea, the oncologist said they are much better managing this now. There is lots of information available here, and people to answer questions, or just somewhere to find support and solidarity. Try and stay as positive as you can. Take one step at a time and look after yourself. Katie 
  • GorgyS
    GorgyS Member Posts: 83
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    Hi JenD.

    It's quite a shock, especially a few days or weeks after the diagnosis, with all the scans of the body to check if the cancer has spread to other parts of the body. Once you start the treatment, including surgery, the shock will turn into a desire to go through the treatment. I received a similar diagnosis: Hormone-positive, Her2-negative, grade 3, BUT stage 3, as I had 14 lymph nodes involved and removed together with an 8 cm lump in the second surgery to remove margins. I managed with the lumpectomy and kept my breast as the lump was very close to the armpit. Anyway, I started chemo after I will have radiation and hormone blockers therapy. For the same reason, to prevent the cancer from recurrence. I would never have imagined that I would have so much strength to deal with this unexpected experience. Probably I got that from many women going through the same or similar journey.

    Like Katie46, I have not had too many bad side effects from chemo, as they are managed by anti-nausea medication. I also take Somac for heartburn, and for constipation, I manage with senna tea. I try to eat well and prioritize myself. I stopped working immediately as I had 6 months of sick leave and Long service leave. However, I am going back to work from home after AC rounds. Once you have a schedule of your appointments and know what side effects you may have and how to manage them, you may feel too that some work would bring normality to this not really normal situation. Although I have support from family and friends, from the beginning, I took control of my situation by getting informed through BCNA and this network highly recommended by my medical team. I work well with McGrath nurses and my medical team.

    All the best with your treatment, and we are here for each other.


  • JenD
    JenD Member Posts: 18
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    Stop and b.r.e.a.t.h.e. I keep reminding myself  :).  I am an organiser/planner by nature, so being in hold day by day is a new challenge!    I am very grateful and relieved scans showed no spread to major organs.  Grey area between stage 2/3 with local spread in nodes under arm and one in chest (containing cancer cells).  This has all been part of assessment thru scans, needle biopsies etc so I feel the multi team is taking the time needed to agree on approach of treatment that will be best outcomes with whats going on in me. ( PS I am 54). 
  • Katie46
    Katie46 Member Posts: 128
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    Yes, it's reassuring to get the clear scans. Once I had a plan in place for my ongoing treatment I felt much more in  control, just have to get on and get it done. I am 51. 
  • MrsMorrisey
    MrsMorrisey Member Posts: 83
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    Yes the shock hits you like a truck. Who would’ve thought hey? 
    Mine is similar grade 2 stage 2 28mm IDC. 
    I had lumpectomy 4 weeks ago but DCIS remains so I have to have another surgery next week, going in the same incision. 
    Same surgeon, different hospital 🤷‍♀️
    I had three nodes taken and they are all clear. 
    My current dilemma is chemo as I’m am in a “grey area” ( very annoying) benefits will be 3% but will probably not proceed. 
    I’ll wait til the second surgery is complete. 
    Will have  radiation and will attempt hormone blockers. 
    But the only advice I have is try not to let it totally take over your life. Get info then back away. 
    The anxiety can be debilitating. 
    Also find someone who is on the same wavelength as you. 
    Helps to have each other to debrief and not compare but also understand. 
  • JenD
    JenD Member Posts: 18
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    Surgery done (partial mx with lots of lymphnodes), with two nights in hospital and very nice to home again. Have fluid drain bag in tow and daily home nurse visits, with appt next week back at clinic to find out more on byopsy results and next treatments.
    One day at a time!
  • arpie
    arpie Member Posts: 7,742
    edited March 4
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    It is great to be home again - just make sure you don't 'accidentally' overstretch or anything .... it is often the 'automatic' things that can cause damage ..... picking up the grandkids, reaching up (or down) into kitchen cupboards .... hanging out the washing etc ..... delegate all those tasks!  ;) 

    Whilst you 'while away your time' at home, recovering .... jump onto this thread & check out other areas of the forum that may interest you!   We chat about gardens, our furkids, art & craft ... and we even have a couple of posts for 'giggles' ...  At the bottom of the post are some 'tick sheets' that you can download - to chronicle your recovery - emotionally and physically.  You can take them with you to your appointments xx
    https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

    Take care, recover well, and good luck with your results.  And yes, take one day at a time x
  • JenD
    JenD Member Posts: 18
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    Thanks, I will have a look. 

    And yes the balance between behaving and overdo is pretty fragile, so definately need to pace myself!   Still have numbness along back of arm, which is weird, and my anchor bag (fluid drain) keeps me grounded for now.  


  • Blossom1961
    Blossom1961 Member Posts: 2,415
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    @JenD I still have numbness nearly seven years down the track
  • arpie
    arpie Member Posts: 7,742
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    Sorry @JenD - forgot to add the link!  just added ;)   Yep, make haste slowly xx

  • GorgyS
    GorgyS Member Posts: 83
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    Hi JenD, I'm glad to hear that you're progressing beyond your surgery and moving forward. Four months after my lumpectomy, I'm still experiencing numbness, particularly under my arm and along the back of it. Currently, I'm undergoing chemotherapy, and my focus has shifted somewhat to managing the PICC catheter in my right arm for infusion. So far it is really going well. 

    Despite this, I have three-monthly appointments to monitor for any signs of lymphedema, which thankfully hasn't developed yet. I've also been experiencing pain in my operated arm, which I see as a helpful reminder to take things easy and not overuse my arm.  Additionally, dealing with a seroma hasn't been too much of a hassle; I understand these things take time to heal.

    I've been informed that the recovery process for my operated arm can be lengthy, and I've heard that numbness may persist indefinitely. I make sure that I report all of these symptoms to both my oncologist and breast surgeon for reassurance and some suggestions to cope through the recovery process. It's not easy, but there's no other option than to be patient and resilient through this journey.

  • JenD
    JenD Member Posts: 18
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    So 17 days after surgery.  Still sore and tired but slowly recovering ok I think, although patience is a challenge. 

    Summary of results of bcs (partial mascectomy) include removal of 3.2cm tumour (Left outer quadrent) and a dcis also found and removed during surgery , with clear margins.  Axillary clearance of 30 lymphnodes, with 14 containing cancer cells, 16 clear.  Was very tight and swollen in op area on thursday, so check in at clinic ultrasound and found seroma x2 so they have been drained, with weekly follow up for a while on that.   Wow! 

    So while I cant raise arm yet above shoulder height or weight bear too much I am doing gentle stretch exercises slowing trying to stretch under arm area, which is crazy nervy tingly, sore, and some numb spots and very tight.  Incision is one long line, neat and healing ok.  

    Next for me is chemotherapy and radiotherapy, probably to start April.  There was a positive node (showed on pet scan and byopsied in chest which will be targetted during this), so local/regional spread. 

    All this, I am still grasping a bit at how I was so unaware of all of this going on inside!  Stage 3 BC!  Crappy indeed, but doing ok considering I think!     
  • arpie
    arpie Member Posts: 7,742
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    All the best with your recovery @JenD xx. Make haste slowly - glad you got onto the seroma early & had it drained.   The nerve tingling & numb bits may take a while to settle ..... great that your wound is healing well too.  

    take care 

  • GinGin
    GinGin Member Posts: 135
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    @JenD, I’m stage 3 as well (grade 3). I couldn’t raise my arm above 3o’clock after surgery. Saw a physiotherapist (referred through my breast surgeon),  and now have most of my arm movements back. 
    Take it easy and try not to stress your body. 

  • JenD
    JenD Member Posts: 18
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    @GinGin thanks, I will ask about this I think next clinic appt as keen to do the right things max improve.   

    Random crazy - I play a music instrument with a national comp in 2 weeks time so aiming to be onstage with my brass band!  Reheasing this week very carefully again, thankfully I sit while playing, with most of work in my non-surgery side.   I ask for help on any lifting (an 8 kg tuba so not ideal!, and I cant weight lift away from body),  but it was ok once on my lap!!  Just uncomfortable at times so cant stretch to reach around yet.  Yes, Crazy I know.  But achievable ✔️, just.  Breathing is ok still post surgery whew!  (I will have no problem holding breath for radio on deep inspiration breath hold).