Awaiting surgery pathology, so many questions re treatment possibilities, timing etc.

CJD_2023 Member Posts: 2
Hi everyone, this is my first post here.  I was diagnosed with ILC 24 Feb, had a left mastectomy 17 March with ALND as there was cancer in the sentinel node/s.  I have an appointment with my surgeon this week (30 March) where I will find out my treatment plan and pathology results.  I had 2 tumours biopsied 20 Feb, both were grade 2, one pleomorphic, the other non-pleomorphic, both are ER and PGR positive, HER2 negative.  I was not given the option of reconstruction as the cancer was too close to the skin to safely conserve it.  I'm 49, fit and healthy, have been cardio and strength training 4 days per week for over 6 years and have been walking my border collie puppy about 25km per week since Christmas, so I'm really hoping this will help my body get through treatment as best I can.

Now for the questions,
  • For those who had ILC with lymph node involvement, were you always offered chemo and then radiation and if so how long / frequent was your treatment?
  • How long after surgery did you start chemo?  I have been offered to go on a fantastic relaxing holiday 10-17 April and am hoping to go as we've had to cancel our original holiday plans that were to start at the end of this week.
  • I have booked in to have my eyebrows tattooed (featherbrows), if you had this this done prior to chemo treatment, were you glad you did?
  • If you originally had a single sided mastectomy did you choose to remove the other breast at the end of treatment?
The CT scan I had recently found no signs of matastasis which I'm clinging to, however a rather large mature teratoma was discovered on/near my ovary so it is likely I will also have a full hysterectomy including removal of ovaries and cervix.  Given that estrogen needs to be blocked and I'm currently premenopausal, this is the likely recommendation given my diagnosis.  I will find out soon, but I'm expecting this surgery would occur after radiation therapy.

Any other advice is most welcome, xo


  • arpie
    arpie Member Posts: 7,733
    edited March 2023
    Hi @CJD_2023

    SO sorry to see you here, joining the club that no-one wanted to join. Xx. Wishing you all the best for your pathology results & ongoing team meetings xx. I hope you have a supportive family member or good friend to attend them with you.  I’d also suggest that you record the meetings on your phone, as it is so easy to forget or ‘miss’ bits on the day.

    Well done on keeping so fit - that will definitely help with your recovery and also mentally as well - there is nothing like getting out, communing with nature. Xx

    We have a private ILC group that you may like to join - click on the Groups above … where we put up info as we find it, re ILC, as it IS such a strange beast & different from the other and you may like to join the Regional/rural/remote group too.  Are you aware of the PATS scheme in WA where you can claim fuel & some accommodation costs re your travel to surgery & appointments.

    I only had a lumpectomy & radiation with my ILC & am on hormone tablets now - so I dodged the chemo bullet … so not up on the chemo bit ….

    You can also ‘search’ within the forum for ILC and Pleomorphic for previous posts ….. 

    Re chemo - you can only go with your Onc’s suggestions ….. some sorts of ILC (I believe) do not suit chemo, but there are plenty here who DID have chemo with their ILC.

    @Sister had Pleomorphic - she may be able to jump on & help you out with the other questions.   

    I believe you SHOULD be ok to have your holiday - as they usually wait til after your wound has fully healed …. Specially for the radiation.   Just raise it with your Onc/Rad Onc so they are aware of the dates.  I had a lovely holiday to Norfolk Island after my Rads - and the Onc said I could have the Rads AFTER the holiday if I wanted - but I preferred to get the ‘active treatment’ over & done with before the holiday & I am glad I did.

    Jump onto this thread - it has a lot of info about the forum & different subjects ….. you can put up pics of you pup, your garden & even the views on your walks ….. and we even have a couple of funny bits, as we all need a bit of a laugh now & then

    Take care, all the best with your ongoing treatment xx
  • Julez1958
    Julez1958 Member Posts: 1,156
    Hi @CJD_2023
    In answer to your last question , I originally had a mastectomy of my left breast and after radiotherapy decided to have my right breast removed as well .
    I had DIEP reconstruction and had to wait at least 6 months after completion of radiotherapy to have it done.
    My medical team was pretty sure I would be recommended radiotherapy due to the size of my tumour.
    I was lobular but no lymph node involvement .
    I was not recommended chemo but everyone is different / your treatment team will recommend the best course for your circumstances.
    If you want more info on reconstruction your can ask yo join the private group on here “
    choosing breast reconstruction” and if you are thinking of going flat there is a private group for that too - call the helpline if you need help joining.
    All the best for your treatment 🌺
  • Hoobies28
    Hoobies28 Member Posts: 2
    Hi @CJD_2023,

    I'm in a weirdly similar situation. 49yo, stage III ILC (6cm+, pleomorphic and hormone positive) with lymph node and skin involvement. I had my left breast removed on March 6. I've been recommended six months of chemo, followed by radiation and hormone therapy. Chemo is scheduled to start in ~2 weeks.

    Not thinking too much about my right breast at the moment (too focused on preparing for chemo) but I think if the opportunity arises I will talk about having it removed to even things out if you know what I mean.

    Hope you have a great holiday.

  • Abbydog
    Abbydog Member Posts: 484
    My BC was ductal, so not the same, maybe similar.
    I had Mastectomy with axillary clearance, EC + Taxol total 20weeks, RT 5weeks, now Aromatase Inhibitors for 5-10 yrs. In that order.
    Prior to getting BC I had my eyebrows tattooed, because they were very sparse. I had them redone after my surgery and before Chemo. Very happy that I did. I did not lose my hair on my head, as I used Cold Cap. But I still lost eyelashes and eyebrows. My eyebrows have not grown back. I'm almost 3yrs post Chemo.
    I plan to have my eyebrows done again soon, when I have nipples tattooed on my reconstruction.
    After full recovery from active treatment. I had reconstruction. I deliberated on going flat for a while.
    I hated having one breast and being lop sided. 
    I had Lat Dorsi to my cancer side, and a prophylactic to the other side at same time of surgery.
    Both had tissue expanders, and now Implants. I was not suitable for DIEP.
    I have symmetry and am very happy.
    Hopefully this is a little helpful.
    All the best for your treatments.