HER2 positive

Hi,

My mum found a lump in her breast in Dec, biopsies/ultrasound on 3/1/20 which also found cancer in her lymph nodes. The surgeon sounded positive and spoke about having a mastectomy and chemo.
My mum was sent for a CT scan last week & saw consultant this morning which she thought would be to discuss her scan/surgery. My mum was told she has HER2 positive and scan showed spots on her liver and lungs, therefore there will not be having surgery. 
My mum is to put on Heparin & have chemo. I'm struggling to understand the whole " living with cancer" thing.

Does this mean it's only prolonging the cancer from spreading or can you live a relatively normal life for years.

Sorry in advance this is my 1st post & not sure if I've posted in proper thread.

I would be very appreciative if anyone has been through/going through same thing & could help me have a better understanding. I don't feel I can bombard my mum with questions as today has been a very tearful experience.

thank you

 

  • Hi CatChat

    Very sorry to read about your mum. There are many on here with Stage 4 cancer and hopefully they will be along to tell of their experiences. I don't know if your're on twitter but there are stage 4 BC patients who tweet unsing hashtag  #busylivingwithmets . Many of them living years after their diagnosis. Fingers crossed your mum responds well to treatment x

  • Sending strength to you & your Mum. Sorry I can't comment knowledgeably on the advanced stages but I think the usual treatment is with 'Herceptin' aka Trastuzumab. Longterm survival rates are improving and new drugs are being developed all the time.

    I've just had HER2+ lumpectomy & node biopsy and have chemo including Herceptin starting in a couple of weeks.

    It's hard to be optimistic all the time but 100 times easier with an informed and fighting mindset than not. Certainly makes you appreciate the little things in life and dismiss the unimportant.  I'm sure a support group would benefit your Mum and she's lucky to have you onboard x
     

  • Hi

     

    so sorry to here of your mums diagnosis I totally get what your going through. My mum was diagnosed in August 2019 with HER2 positive BC with mets in the liver. She has went through 6 rounds of chemo and is now on Herceptin and Pertuzumab for the foreseeable future or for life! She has a CT last week and we are awaiting results of this! 
    my mums oncologist basically told her that she wants to her to disease to basically a "chronic condition" in which she can live a normal life bar the fact that she will still have to have treatment every 3 weeks! 
    My mum hasn't had surgery yet either and we are yet to find out if she will but the oncologist did say that the surgeon may not operate because of the secondary in the liver! 
    hope this brings you some comfort at such a difficult time I only know too well what your going through!

    lots of love xx

  • Hi,

    Thank you so much for replies. 

    Firstly, I'm so sorry you are experiencing the same thing with your own mum. 
    My mum is a positive person & always cheery.but this was not the news she was expecting, she thought I'll get a mastectomy, chemo etc & beat it. To be told there will be no surgery has knocked the stuffing out her, oncologist said it was not in her best interests to operate due to spots on lung/liver. Apparently cancer would spread quicker if she was operated on.

    We  are trying to come to terms as a family about what's ahead. I'm finding it really difficult to come to terms with but putting a brave face on for my mums sake. I have been reading statistics etc online but not going to anymore as it's frightening.

    My mum has oncology app. on Tue to discuss chemo & Herceptin. Your mums Oncologist sounds like she gives good advice & not to let the cancer take over her life.

    I hope your mum is living her best life as that's what my mum intends to do. I just want to wrap my mum up in cotton wool & protect her....which is the last thing she would want! 
    Thank you for sharing your experience & I appreciate you taking the time. I've definitely took away some comfort as no one else fully understands how it feels unless in similar situation.

    My mum is precious to me as yours will also be to you too.

  • Hi, thank you so much for reply & advice. 
    I'm not on twitter but will join and follow #busylivingwithmets

    Hopefully my mum will respond to treatment xxx

  • Hi, thank you for your reply & kind words.

    Once we get our head around that awful news, and my mums ready, a support group would be beneficial. My mum has very good friends and us as a family however people going through the same thing will have a better understanding.

    You sound like a positive person which I'm trying to be for my mum. Good luck with your impending chemo & stay strong xxx

  • Hi catchat

    we Definately are going through quite similar situations! But DO not read online because them statistics are old and not based on new treatments etc. 
    I had my own head fried with reading online. There is another lady in which was in the same situation as your mum and mine on this forumn and 6 years down the line she is doing so well and never had surgery. 
    unfortunately we just have to keep positive for them as much as possible. As long as it doesn't progress and treatment keeps working they'll surely be living there best life! 
    there are thousands of different treatments etc so keep the faith 

    xxx

  • Hi Catchat, 

    Sorry to hear about your mum. My mum is in a very similar situation. She was diagnosed with breast cancer which had spread to her lymph nodes and had a single mastectomy and node clearance in Jan '19. She then had 3 weeks of radiotherapy and seemed to be getting on well.

    Unfortunately after developing a cough before Christmas we learned that the cancer had spread to her lungs. Like your mum she has been told that chemo and herceptin may stop it spreading further and prolong her life, possibly by several years.

    She had her first dose of chemo and herceptin last Tuesday and will be getting the chemo every week and the herceptin every three weeks. The chemo is vinorelbine and is taken in tablet form. She didn't have any adverse reactions to either so hopefully that is a positive sign. Like your mum she will have to continue this regime indefinitely.

    She has been extremely fatigued and breathless for several weeks and has a dreadful cough. To add to this she developed shingles at Christmas and that really knocked her back too. The doctors are a bit vague as to when she will see any improvement to her symptoms and I wonder can anyone who is on this regime advise me. The breathlessness in particular is really getting her down. My mum is 77 but until last year she was extremely active doing her own decorating and gardening. We know there is no miracle cure but at the minute walking from bedroom to bathroom has her breathless.

    It would be good to chat to someone in a similar position and hopefully both our mums will find themselves feeling a bit better. 

  • Hi Jules, How did you get on? I’m interested as I am in a very similar position to what you were, ductal Her2+ -  mammoplasty coming up in early feb with sentinel node and random node removal for biopsy (looks clear on ultasound but surgeon wants to make sure) followed by chemo/ herceptin for 6 cycles then herceptin for a year, would love to know how you got on and how you are now?L. X

  • Hi Yorkiegal & Happy New Year, though really sorry about your diagnosis. Can't believe I was just diagnosed this time last year and am already due my first annual mammogram! 
    Feeling very blessed that treatment was straight forward and not disrupted by C19 though the year was a blur of appointments here & in uk and I had to isolate after each trip. I'd say thoughts & worries are a major part of the process and joining a private Facebook group for info, feedback and motivation was invaluable. (UK Breast Cancer support group - for sufferers and survivors.) and their wonderful spin off exercise group. 
    Not sure how much detail you want (I'm in Guernsey so likely different in your area or re Covid). Op was 20/1, a day case and with clear margins & sentinel node, tender with some bruising but neat scars. I had a Picc line fitted for chemo 3 weeks later. Mine was 12 weekly paclitaxel infusions Feb-Apr (I successfully cold capped and wasn't sick) also had herceptin every 3rd week for 6m and 15 radiotherapy sessions in June (though I think the norm is now 5 more intense sessions) So I'm finished active treatment other than 3yrs of 6monthly Zoledronic acid bone infusions. I go to a weekly BC exercise class and we arrange regular walks. It helps so much to chat to people who understand.. though can see that some just want to move on & forget too. 
    Wishing you all the best for your op & treatment and hope you have lots of support xx