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Regina's avatar
Regina
Member
3 months ago

DCIS - Mastectomy - Recon - clear for two years....now potentially something else

My situation in a brief paragraph: At 50 years of age, I was diagnosed with DCIS in my left breast. I opted for a bilateral mastectomy and recon. Sentinel nodes were clear. No radio or chemo required. That was almost two years ago. Apart from now suffering all the typical effects and symptoms of menopause due to no HRT, I've been blessed with a dream run and fantastic road to full recovery from BC. Completely grateful and thankful for the team and support I've had around me. 

The latest situation is that I've just been for my second annual post BC ultrasound with a view to reducing visits with my surgeon from three monthly to annually. I was looking forward to kissing cancer goodbye!! However, the sonographer has found an inflamed and vascular looking lymph node in my right armpit (opposite side to original BC diagnosis).  It was explained to me that this can be due to a number of reasons: fighting off an infection, breathing in smoke, recent flu vaccinations or, at worst, something more sinister like cancer. My surgeon reviewed this and wants another ultrasound in three months to check on it and if need be, will biopsy then....I have a sick feeling about this.

Since I don't feel like I'm fighting an infection, I haven't breathed in smoke lately & my flu vax was done 10 weeks ago in the opposite arm .... I am feeling extremely anxious that cancer has returned and that it's found a spot in my right armpit to grow and spread. A three month wait to see if this is or isn't the case seems like absolute torture and a return to 'the waiting game' that only cancer sufferers know. 

I'm sure that most of you reading this post can relate to the worry of 'the wait' when you have that initial cancer diagnosis. The awful feeling of being out of control and the unknown picture of what's up ahead. Sleeplessness has returned. Constantly thinking about it has returned. The worry has returned. I have back and neck pain that I'm sure is due to the stress, but am naturally concerned it's cancer returned. Since my mastectomy and recon, I've been able to put all of that aside - until now. 

Has anyone here experienced a vascular anomaly with their lymph nodes post having BC and recon? If so, what was it attributed to? How was it handled by your team? Should I be asking for a lymph biopsy or intervention earlier than waiting three months or am I worrying unnecessarily? 

I'd be grateful for any thoughts, honest advice or similar experiences & decisions that anyone can offer. 

anxiety
biopsy
breast reconstruction
lymph nodes
mastectomy
Reconstruction
surgery
treatment decisions

3 Replies

  • arpie's avatar
    arpie
    Member
    3 months ago

    That's a real bummer Regina​  ..... Fingers & toes crossed that it IS just an infection/inflammation!  (Even a common cold/flu or dose of covid could cause inflammation - even some medications apparently!)

    Remember back when you were young & Drs would always run their fingers over the back of your ears & down your throat whenever you had a consultation - they were just checking the lymph glands, for inflammation.   

    Hmmm, tho if it was me, I think I'd be trying to get it checked out earlier than 3 months time ..... cos the waiting (as you know) just SUCKS - and your mind will just go off on a tangent - as any cancer diagnosis just mucks with your mind, even more than your body (evidenced by your loss of sleep :(  )   

    Maybe ring our helpline tomorrow 1800 500 258 (Mon-Fri 9am-5pm) to have a chat ... they may be able to help with your decision making xx

    Also, Consider checking out Charlotte Tottman's podcasts on her own BC cancer story - she is a specialist cancer psychologist who was diagnosed herself with BC and had a double mastectomy, choosing to remain flat.   She 'thought' she knew what most of the 'procedure' would be - so was really surprised when she had similar reactions to her own clients ... and she talks about it, what she expected vs what happened.  She is very easy to listen to - You can just listen to individual sessions, or just start at the 1st one & work your way thru.  xx   
    What You Don't Know Until You Do ....
    http://www.drcharlottetottman.com.au/my-podcast.html

    Take care & all the best .... and stay away from Dr Google!! xx

     

  • May2024's avatar
    May2024
    Member
    3 months ago

    Regina​ I'm only 6 months in from my DCIS double mastectomy & immediate implant journey so I can't offer any advice on your inflamed lymph node, but just wanted to jump on here and offer some 'thinking of you' support.  Waiting is the hardest, as is not not knowing what's going on. Waiting for results certainly messes with our minds.  As arpie​ suggested, definitely stay away from Dr Google.  I hope your specialist decides to do another check earlier than the 3 months you were told!

  • BaggyPants33's avatar
    BaggyPants33
    Member
    3 months ago

    Dear Regina,

    Yes I completely get it - the wait is agony and overwhelming.  Similarly in brief form - 2021 DCIS - at 46 I had lumpectomy and radiation treatment on left breast. 4 years later -March 2025 -Had standard annual mammogram and ultrasound also to check on lump I found in same radiated breast, lump could not be found in these scans due to breast density, (no pain in lump and no swelling etc).  Due to the fact that my existing surgeon could tick lots of boxes I was able to have an MRI with contrast (2 month wait).  MRI with contrast shows lump is benign in left but also shows new potential DCIS found in right breast that did not show in mammogram and ultrasound.  Now staring down a tunnel at DCIS in other breast but (WAITING) for focussed ultrasound + -biopsy appointment and next steps - completely OVERWHELMED (but trying to do what I have always tried to do through 2 x Melanoma diagnosis and 1 x BC diagnosis - breathe and be as happy as possible until I know it is def cancer then one step at a time, compartmentalise to enable me to cope). Thanks to the replies here I started listening to the BCNA Dr Tottman podcasts in small bites which is a wonderful resource - putting words to my current state of mind. 

    I am including two links to an open access article in Lancet just published on MRI with contrast and other tests with contrast and a page on the Mayo Clinic site on breast density for anyone interested (I am a librarian so ensuring I read reputable medical info is key and both these are legitimate and medical based  Comparison of supplemental breast cancer imaging techniques—interim results from the BRAID randomised controlled trial - The Lancet

    Dense breast tissue: What it means to have dense breasts

    I agree with others, your state of mind is important so advocate for yourself (request, beg ask) for an earlier scan than 3 mths.  I find advocacy for my health exhausting but my advocacy led to scans and choices finding Melanoma early through the years and finding lumps and getting further scans etc during the BC process -so absolutely worth it.  Best wishes for strength and health to all