Treatment after Mastectomy

dadadada North West SydneyMember Posts: 5
Hello all,

I am new to this forum as I was only diagnosed with invasive lobular cancer grade 2 (multifocal with 4 tumours) on my right breast in late March and undergone total skin sparing mastectomy last week with reconstruction done straight away. 

I went back to see my breast surgeon 2 days ago and was told my 3 sentinel lymph nodes biopsy were clear. However she said I will need about 5-6 months of chemotherapy plus 4 weeks of radiotherapy, followed by hormonal therapy (Tamoxifen) for the rest of my life.

As per pathology report, I am positive to both oestrogen and progesterone receptor. I will be seeing my oncologist in 2 weeks time but I am wondering if anyone requires all 3 treatments even if lymph nodes are clear?  Thank you.

Comments

  • kmakmkmakm MelbourneMember Posts: 6,842
    edited April 18
    Yes. My understanding is that is fairly standard. ILC is tricky and they like to hit it hard. You also had four tumours. I had IDC, no spread, and after a genomic test to see if it would be beneficial, did chemo. Because of a bad family history I then went on to have a bilateral mastectomy (and recon). I am on estrogen suppressing meds for 5 - 10 years. The latter is what I would be querying. As your onc why they want you to be on it for the rest of your life. Breast surgeons are not oncologists and sometimes get the finer details of endocrine therapy wrong!

    And welcome to the forum. I'm sorry that you've joined us but I hope you find it as helpful and supportive as I have. K xox
  • SisterSister Adelaide Hills, SAMember Posts: 3,867
    Welcome to the forum.  ILC is a sneaky one and it seems that they're only beginning to understand how it may differ from ductal.  Mine was OR & PR positive and had started spreading to the nodes.  I think that is why after surgery, I ended up with chemo (AC-T) - 6 months - then 15 days of rads.  I'm now on Letrozole for at least 5 years but possibly 10.  I would question Tamoxifen for the rest of your life as that sounds strange.
  • arpiearpie Mid North Coast, NSWMember Posts: 2,512
    Hi @dada  - so sorry to see you here, but you're in the right spot to ask any question you can think of, & be assured of an honest answer, as we've 'been there, done that'!

    Where abouts are you (town/city) as we have members pretty well everywhere & they may be able to advise you of additional services available in your area.  You can edit your profile to indicate your location.

    Also - your 'rough age'?  Often Tamoxifen is given to pre menopausal women (it was the original hormone blocker from decades ago), with Aromatase Inhibitors now being  popular with post menopausal women (like me at 66.)

    Like you, I had ILC, with Breast conserving lumpectomy and immediate 'recon/tidy up'. I had clear margins & my 3 nodes were also clear - I had 2 small tumours, also Grade 2, Or+ & Er+ too.

    Yes, ILC is considered a sneaky one (with legs - like the advert on TV) so they hit it aggressively, to make sure they  mop up any 'randoms'!

    My medical team opted for Radiation only for me, as mine were small & caught early - which I had done in a regional hospital, staying onsite for 4 weeks in the Rotary Lodge at minimal cost (as I live 1.5hr away from the closest hospital that does the treatment.)  My radiation was done in the public system & there was no charge.  I started on Letrozole for 6 weeks about a month or so after radiation, then swapped to Exemestane due to some nasty side effects & am now having a break from it after 6 months and may go to Anastrozole!!  

    I finished my active treatment this time last year.

    All the best with your meeting with your Onc ..... don't forget to record it, to go over it later, as it can be difficult to remember everything that is said at the time. xx
  • dadadada North West SydneyMember Posts: 5
    Thank you all (@Sister @kmakm ,@arpie) for your valuable input, really appreciated it. 

    Hi @arpie I am 44 years old and have just edited my profile, thanks for the tips. 

    I have my surgery done at the Macquarie Uni Hospital and will be having chemo and radiotherapy there too if I am going down that path after seeing the Onc, does anyone here have any comments/experiences for either treatment at this hospital? A friend of mine suggested me going for public hosp if i need radiotherapy as public system has 'newer' machines?

  • arpiearpie Mid North Coast, NSWMember Posts: 2,512
    @dada - I would think most of the bigger public hospitals have to keep up with the latest machines (unless they are smaller regional hospitals.)  Is the Macquarie Uni Hospital actually 'near' Macquarie Uni over near Ryde?  If it is a Teaching Hospital for Drs/Surgeons, I think it would have to have the most recent equipment available for them to train on?

    I know that our closest public hospital has only just been promised a Big New Scanner in the next 12 months (I can't remember which one tho - CT/MRI) and it also doesn't have a radiation dept that I am aware of, whereas up til now, I've had to go to Port Macquarie for my treatment, and I had my surgery in Sydney as I live up from Newcastle & down from Port Macquarie.

    Maybe put it on your list to ask your Radiation Oncologist?   All the more reason to record your meetings & tick off your questions as you go!  ;)    I saw my Med Onc the other week & forgot to ask half my questions!    DUH!

    You'll be seeing a Rad Onc (for radiology) as well as a Medical Onc (for Tablets) I reckon, too.  Make sure that both of them include the surgeon AND your GP on all their reports & visa versa.  Somehow my Onc & GP were dropped off my Surgeon & Rad Onc's reports & it breaks the loop!!  All of your professionals should be informed any time you see one of them - they tend to space it out, once you've finished your Rads, so you see one of them every 3-4  months (or as required.)

    All the best - enjoy your easter xx

  • youngdogmumyoungdogmum Gold Coast Member Posts: 111
    Hi
    welcome to the shitty world of BC! 
    But we’re a lovely bunch and the ladies here have been so helpful.
    i think given your age and the nature of ILC being different to ductal hitting it hard makes sense. I’m 27 with ILC and had mastectomy/lymph clearance, am currently into 2 rounds of my 8 chemo (dose dense and aggressive closer together as opposed to spread out due to my “age and good health” ha ha..) plus 5 weeks of chest wall radiation. 
    I was told by my oncologists that lobular doesn’t always respond as well as ductal to chemo but given my youth I was advised it was the best option for long term survival. 
    I have been told 10 years tamoxifen standard now, no benefit to taking it longer as it will then potentially cause too much calcium wastage, increase risk of cardiovascular disease. However was also told a recent study showed that aromatase inhibitors showed better results in pre menopausal women taking zoladex to induce menopause and I have been recommended that as my endocrine therapy post chemo.
    There’s lots of questions to ask, make sure you ask whatever you need to!

    Best of luck with your treatment.
  • SisterSister Adelaide Hills, SAMember Posts: 3,867
    My advice is to take each stage as it comes but definitely go public for rads if you can as it comes with a hefty price tag to go privately (and as far as I can tell, no real difference in benefit).
  • youngdogmumyoungdogmum Gold Coast Member Posts: 111
    @dada
    A bit more to add.. before I went on leave from my position at work (nurse) I downloaded the protocol for radiation of early breast cancer at the hospital am treated at, what is considered the forefront for radiation in QLD (got the newest technology earliest etc, not that it matters but I imagine their protocol is used widely throughout QLD as standard of care..)
    I just re read it thinking it might help you.. it says international guidelines recommend radiation post mastectomy for high risk features - these include younger age, multi focal disease and size. I think that might answer why rads is being recommended :)
    Happy Easter weekend considering everything !!
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