Triple Neg HER2 what questions

Mum2Mum2 Member Posts: 5
Hello, Im 46yrs old an a mum to 2 beautiful girls 4 and 7. In Nov 2017 I found  a lump left breast and my GP gave me a referral for M/gram and U/Sound. Due to work (Im a full time carer for my 7 yr old at school) I decided Xmas holidays to get it checked. By then I had found a second lump. M/gram did not pick up the tumours but u/sound did and yes they were confirmed malignant. Just over a week ago I have a partial mastectomy and sentinel nodes removed. Pathology found cancer is the nodes also. The breast margins were not clear and it has come back as HER2 TNBC. I am booked in for a full mastectomy next week and aux nodes removal. Dr has said Chemo will be the plan also. I have seen so many different combinations of chemo to treat TNBC and read some"recipes"  have not worked  I am yet to met with my oncologist what questions should I be asking.. My plan is to beat this no matter what as I need to be there for my girls.Thank you
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Comments

  • primekprimek Broken HillMember Posts: 5,188
    Can I clarify. Is your cancer her2 negative?
  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 3,234
    hi @Mum2
    Like primek said can you clarify Her2 negative or Triple negative breast cancer? 

    you have your hands full ... 

    Do you have a Breast Care Nurse yet ? 
    Do you have a My Journey Kit ?
    It might be good for you to take someone with you to your appointment/s  friend/sister etc who can write things down and take it in more as we often miss some of the information when we are going through treatments. 

    I am carer to my 2 boys so understand the angst of diagnosis and treatment. 


    Below are a couple of links to help you find your way around the forum and also how to find a breast care nurse and how to order a MY journey Kit if you haven't got one yet. 

    It can be a a whirlwind when we first get a diagnosed.... Breathe and take it one step at a time. 

    The what and how thread.

    http://onlinenetwork.bcna.org.au/discussion/14879/the-what-and-how-thread/p1 

    Breast Care Nurses

    https://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse.aspx 

    My Journey Kits and other resources. 

    https://www.bcna.org.au/resources/

    BCNA Helpline 1800 500 258

    If you have any questions, concerns or require any further information or support please call 1800 500 258.  The Helpline is open Monday, Wednesday and Friday from 9 am till 5 pm EST and Tuesday and Thursday from 9 am till 9 pm EST.

    Hugs 
    Soldier crab

  • Mum2Mum2 Member Posts: 5
    Sorry ladies for the late response. I have been in hospital on IV to clear up infection from my partial 3 weeks ago in preparation for my mastectomy this Tues. Yes HER2 triple negative is what my Dr has said. I see a breast clinic in my state but not a one on one breast care nurse. I wonder if that may happen once therapy starts. The nurse at the clinic has organised a my journey kit plus the cartoon book for my oldest daughter. I have also received this week a Berli (?) Bra and padded form. I am at the clinic tomorrow morning to have my u/arm drained as it is filling up with lymph fluid. Should I be asking to see the path report. Does HER2 not go with triple neg, is this even more unusual.
  • Sunshine0206Sunshine0206 Member Posts: 146
    edited February 2018
    Hi

    A diagnosis of triple negative breast cancer means that the three most common types of receptors known to fuel most breast cancer growth–estrogen, progesterone, and the HER-2/neu gene– are not present in the cancer tumor.

    X

  • Mum2Mum2 Member Posts: 5
    Thanks Sunshine 0206. Yes thats right. The original plan was a partial mastectomy and sentinel biopsy followed by rad and hormone therapy. Mr Doctor was very surprised to read the pathology result from that surgery and to find 2 x lymph node tumours (12 and 9mm) let alone the TN pathology. The 2x  tumours removed from breast were small. His new plan this Tuesday full mast, aux clearance  and 6 mnths chemo followed by 6 wks rad. Xx. I had to tell him not to be surprised due to our family dynamics. (my daughter has the rare genetic condition of ostegenesis imperfecta (brittle bone) and she is a spontaneous mutation no family history) so I said we are not surprised Doctor, just dont quote me any percentages as they dont mean anything to us as a family. Lol. (ps I wont change my beautiful daughter for the world she is one strong, loving, compassionate child)
  • lrb_03lrb_03 Member Posts: 1,164
    @Mum2, by your comments there, I'm thinking I can see where your daughter gets her strength and compassion. ☺☺. I think also, from what you've said, you have a TN tumour, otherwise they'd be talking a years worth of Herceptin. 
    All the best for Tuesday
  • TripleNegMamaTripleNegMama Member Posts: 47
    there are a number of different chemo combo's used for TNBC - mostly your oncologist will have a preferred protocol, and you won't know if it works for you or not unless it comes back at you - so I went through surgery, chemo, radiation then a few months later had a recurrence so now we know those chemos were not effective for me - luckily my recurrence was loco regional so still treatable so more surgery then radiation -  at this stage I found out that research shows that about 50% of oncologists don't offer patients what they consider to be expensive options - so I asked if $ was no problem would it change anything - then I found out that they can do more sophisticated pathology that they send to the US and might be able to give details on if one or other chemo combo's would be helpful - cost about $4,500 - unfortunately my TNBC is very aggressive with lots of mutations and there isn't any particular chemo known to be better than any other - however if I'd had a different TNBC it could have saved me from wasting time on an ineffective treatment and got me onto an effective one - even though it didn't help me at least I know I tried everything I could - so then I had more chemo - oncologist admitting it really is just a guess and minimising side effects was probably the decider between 2 options.  Good luck - sending gentle hugs.  make sure to ask them to explain what all the options are even the expensive ones -  I also found out that if I pay for the PET scans that would provide better monitoring for me - lucky I did as it found yet another recurrence and changed radiation plan, dose and area. -  best $450 I ever spent
  • Sunshine0206Sunshine0206 Member Posts: 146
    @TripleNegMama hi :smile:

    how often are you having the pet scans?

    x
  • TripleNegMamaTripleNegMama Member Posts: 47
    Had 5 weeks after surgery just before starting radiation about April, then at end of radiation before starting chemo so about 8 weeks later (june) am having another in early april which will be roughly 3 months after chemo finished.
  • TripleTeaTripleTea BunburyMember Posts: 59
    @TripleNegMama have you had a double mastectomy? Did your BC recur in your breast again?

    i have had Triple neg BC diagnosed August 2017 and finished chemo last month(jan). I am BRCA1 and since my last chemo I have had a total hysterectomy including uterus and ovaries and have just gotten out of hospital today after 8 days from a double mastectomy and lat dorsi reconstruction. 

    The fear of recurrence  is hard knowing our chances are higher of it spreading in the next 5 years and not letting  that control my thoughts. All oncologists and breast nurses etc have said no to doing scans as they find it’s not helpful and doesn’t increase the chances of survival and can sometimes cause more angst as they may find something that needs further testing and then it’s nothing. 

    I saw my mastectomy surgeon today  just before leaving hospital and I had just read your post. I asked her if I could have a yearly PET scan if I was to pay for it and she said I don’t think you need to but if you really want to you can. She is seeing me in 6 months and will order it then if I want it. 

    I know now for some a scan would cause anxiety but for me I think it will give me piece of mind. What state are you in and how much did a PET scan cost you? 

    @Mum2 best wishes with your mastectomy and future treatment. Just take 1 step at a time, do what the experts tell you and before you know it you will be out the other side. 

    Thanks
  • TripleNegMamaTripleNegMama Member Posts: 47
    Hi TripleTea I have had 2 lumpectomies (not mastectomy) but I am not BRACA1 or 2. My PET scans cost about $450 each time, and it means I have less CT scans as I have this instead but my cancer is EXTREMELY aggressive (between the scans before my last surgery and the PET scan prior to radiation I developed a new tumour which got to 18mm in just 5 weeks).  PET scan is good for my peace of mind.
  • Spiv1803Spiv1803 Member Posts: 126
    @TripleTea can I pm you?
  • TripleTeaTripleTea BunburyMember Posts: 59
    @Spiv1803 yes of course xx
  • annsanannsan Member Posts: 46
    edited March 2018
    Hello every-one, I have recently been diagnosed with TN BC.  I am 56 years young and live in Brisbane.  The tumour was detected on routine mammogram screening a couple of weeks ago. I had the lump removed (round wide excision) on February 13.  Since then I have had 3 aspirations for recurring seromas and yesterday the Surgeon decided to put a drain in.  So I now have a very boring plastic handbag attached to enough tubing to plumb a house coming from the catheter in my right breast.  I am fortunate that the tumour was small but it was a very aggressive grade 3 invasive carcinoma.  i saw an Oncologist last week and we have a decision to make that I am struggling with.  As the tumour was small I can just have radiotherapy and play the numbers game that it doesn't recur.  As it is TN and aggressive I have also been offered chemotherapy followed by radiotherapy.  This will reduce the chances of recurrence but as we all know, it may still recur. Whilst, I want to do everything I possibly can to reduce the chance of that happening, I am battling with the consequences of chemotherapy particularly on my immune system.  I am not the most robust person. Interestingly, I asked my Surgeon about a PET scan and he said "well if you want to..."  the Oncologist said she wouldn't recommend it at this time. I would be interested in hearing your comments regarding the side effects of chemotherapy. Thank you, and I am glad I found this forum.
  • lrb_03lrb_03 Member Posts: 1,164
    Hi @annsan, I'm going to ask @Giovanna_BCNA or @Marianne_BCNA, or even @SoldierCrab to restart this as a separate post, to make it easier for you to see replies. 
    We all respond differently to chemo. I was fairly lucky and managed to continue to work 3 days per week with minimal time off during chemo. Others are completely unable to work, or anything in between can be normal
    Have you got a My Journey kit? Do you have a breast care nurse you could speak to?
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