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New diagnosis hers2 positive er/pr positve

MelloMello Member Posts: 4 New Member
Hi all, I'm new to ever using group discussion and having new ca diagnosis. Is anyone out there who has same diagnosis what was your treatment option.

I'm going through all the emotions of the diagnosis and hoping to find some relief with chatting to ladies who are experiencing the same.

Hope to hear your experiences too, so we can get through this.

Mello

Comments

  • AllyJayAllyJay Member Posts: 737
    Hi there @Mello and welcome to the group which nobody would want to join. I was diagnosed in 2016 with triple positive breast cancer, the same as yours. Mine was Grade 3 (aggressiveness), Stage 3, multifocal (more than one lump) and with node involvement. So call "abnormal geography" on the right side. I had 4 X AC chemo, followed by 12 X Paclitaxel and Herceptin which continued for just short of a year. After the chemo was finished, I had a bilateral mastectomy with full node clearance on the left and sentinel node on the right. The pathology report from both breasts showed no live cancer cells in the left breast and nodes, only the (quote) "empty tumour beds. The right breast showed multiple areas of abnormal cells which have a history of going bad, so I was very pleased that I'd insisted on having both off. I'm now on Letrozole (a hormone suppressant) since 2017, and will stay on it for at least ten years total. I have a number of other health issues which result in frequent CT scans and MRI scans. They all show that I'm still NED. (No evidence of disease). I was 58 at diagnosis. Hang in there...if this old chook could get through to the other side, then so can you too.
  • ChevvyChevvy Member Posts: 17
    Hiya... its a shitty diagnosis hey. The ladies on this forum have given me some great advice, I'm only 8 months post my diagnosis, (and unfortunately I've just received a second one) ,  I don't have their in-depth knowledge and words of wisdom but what I can say... and what I would say to my old pre-diagnosis self is.... be kind to yourself, that might not make much sense at the beginning of your journey but hopefully you can relate back to it as you travel this road.. allow yourself to have bad days, its normal and its really important to get emotions out, you just have to remember if you have too many off them that you need to ask for help, dont try to be a superhero, you will need your strength, allow people to help you. This journey will be hard for you, it will also be hard for those close to you... tell people how you want them to support you.. ie..do u need company, do u just appreciate regular messages of support, do u want dinner cooked once a week and dropped over... my dearest friend said to me half way through my journey "I should have asked you at the beginning how I could support you cause it's taken months to figure out"... make sure you connect and have confidence in your medical team. If you have a specialist you dont like, for whatever reason, you need to get referred to a new one... the ladies on here have taught me that... my oncologist was a pratt, he made my journey so much worse than it needed to be, so much worse....i've now kicked him to the curb... you need to retain some control throughout this roller coaster so ask questions till you get AND understand the answers, be involved in the decisions your team are making for you...
    Everyone's treatment plan will be different cause it's dependent on so many different things... but remember that no matter how hard the treatment and side effects may be, the biggest "side effect" is its keeping you alive... I do so wish you all the very best for the days ahead. You go girl... kick cancer to the curb👍..... 😊
  • PV123PV123 Member Posts: 191
    Hi @Mello

    I was Her2+ and ER+, I had 12 doses of weekly paclitaxel and three weekly herceptin for 12 months.  I am now on letrozole for 5 years.  I initially had a lumpectomy, however decided to have a bilateral mastectomy after my chemo finished.  I had dense breasts and was often called back for repeat tests after mammogram.  This made me decide to have the mastectomy.
  • StrongCoffeeStrongCoffee Member Posts: 3
    Hi @Mello, I'm also newly diagnosed. I can't help with experience, as Ive not been through anything other than tests so far

    I'm expecting a call this week with my surgery date within the next 2 weeks. I have In situ and invasive ductal carcinoma, which I believe is triple positive (I was in a daze when that bit was being discussed). At this point, I believe I will need hormone blockers and no chemo. I've opted for a mastectomy rather than a lumpectomy as I have anxiety and know a half-dodgy boob would trigger it. The MRI showed it is only in the one location, so as it's highly unlikely I'll need radiotherapy, I was offered a reconstruction in the same surgery. I've opted for an implant.

    I know the whole picture won't be known until after the surgery pathology returns from the breast and nodes. So I'm trying to mentally prepare myself for anything.

    I'm 45 and live with my very un domesticated husband and my children - 13 & 7. I won't know exactly what support I'll need until I have a surgery date as it's school holidays right now.

    It's all been very overwhelming. I had a mamogram and ultrasound for a lump in a different location (that was just a cyst flaring up) when they found microcalcifications. It's probably good luck really as there is no lump, no changes, doesn't show on ultrasound either. If I'd waited for the letter in the mail at 50yo I'd be in all sorts of strife.
  • MelloMello Member Posts: 4 New Member
    AllyJay said:
    Hi there
  • noosa_blue150noosa_blue150 Buderim QLD Member Posts: 59
    edited April 5
    Have to agree with others- whilst I’m triple positive too, my path may be different from yours depending on size of tumour/ whether you get total regression of tumour with chemo at surgery and a few other factors. So do bear that in mind !

    ‘Im 62, was diagnosed June 20 - 4 cm tumour. Ductal carcinoma . Was told up front they thought I’d be a ideal candidate for lumpectomy ( and radiation) or mastectomy . Chemo advised as first treatment .had 4 x AC chemo , then 12 rounds of taxcel and herceptin every week.  Got 2nd grade Peripheral neuropathy from taxcel so,last 3 treatments on reduced dose taxcel. I did get cardiac issues  as found on routine echocardiograms but am on cardiac meds so feel ok and that side effect will resolve once herceptin ceases.  Decided to go with lumpectomy surgery ( If I get any recurrences in future I’ll go with mastectomy , it’s always in the back of your mind I find .I opted for lumpectomy so I’d have less surgery and drs really said it was as good as mastectomy , (  and avoid need for reconstruction surgery ). Deciding on your surgery option was hardest I thought - my  first reaction was to get rid of the offending boob and I still hope I made the right call.


    Surgery went well in jan 21 , nothing found in lymph nodes . At pathology I did not achieve full regression of tumour -altho it was close. This can be important pathological finding I believe for your oncologist  .  I knew Id continue the herceptin after surgery ( and I found that herceptin infusion fairly easy to tolerate once on cardiac tabs). 

    After surgery my oncologist proposed a further 14 cycles of T-DMI /kadcyla chemo , which has herceptin and a chemo drug in it. Up until,recently it’s a regime they only used with metastatic breast cancer but KATHERINE study in recent years has shown it also gives a HER2 positive early breast cancer patient a better chance of beating recurrences down the track.  I was given the impression that if the tumour had totally regressed herceptin only may have been my treatment .   I wasn’t expecting that and it really threw me but then I had to see it as a best approach to the HER2+ ——-if I opted only for herceptin as it was easily tolerated and then in years to come the cancer recurs I’d  be thinking why didn’t I give myself best chance of beating it .

    ‘there’s a few side effects with T-DMI and kadcyla but oncologist will be monitoring for them and as she said , if they should occur and become intolerable we stop. I’ve spoken to,two,ladies now who,are on this regime and they’re saying it’s been tolerable - yes some tiredness, some aches/pains in joints but not as hard to tolerate as the AC chemo and my hair should not fall out again .I consider that a bonus .

    They checked bone density and found I have osteoporosis so I’m now on calcium tabs, and will get zometa infusion every 6 months over next 12 months. I’ve also started on AI / femara - too early to report on that other than I have noticed hot flushes. I’ll be on these for years 

    Hope all goes well for you . Lots of people here to give you info and support , just reach out 
  • MelloMello Member Posts: 4 New Member
    Hi Ladies,

    Im not sure how to reply to each individual comment, Im still learning with writing in forums etc, lol

    Thankyou for your replies so far, each and everyone of your stories have given me some courage and inspiration. Some of you that I have read have gone through chemo, surgery etc then to have a mastectomy? Im just wondering why some of you are going through all the chemo etc then having a mastectomy? Why is that? Is that because the chemo, lumpectomy was not successful?
  • noosa_blue150noosa_blue150 Buderim QLD Member Posts: 59
    edited April 5


    ive just reread your query ——-sometimes you opt for a lumpectomy (trying to avoid mastectomy / breast reconstruction issues) and they can strike issues with clear excision margins or tumour larger than originally expected despite pre surgery tests . They’d take you back to surgery at a later time .

    I went into surgery for lumpectomy feeling that’ll pathology  found cancer found in lymph nodes or excision margins meant I needed further surgery , I’d probably decide that I’d opt for mastectomy if further surgery then required .
  • noosa_blue150noosa_blue150 Buderim QLD Member Posts: 59
    PS Size of tumour will also affect decisions re surgery or chemo,first 
  • MelloMello Member Posts: 4 New Member
    @noosa_blue150 Thanks for that 
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