HER +3 cancer which has spread to my liver and a spot also found on my pelvic bone

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Hi, I'm reaching out I suppose to just lighten the weight in my head. It's been a whirlwind over the last few weeks. I am 55 years old and have BRCA 1 gene, I was offered a risk reduction mastectomy 10 years ago but refused. Over the last year, I had so many mammograms and biopsies.I definitely became complacent with my frequent new lumps. It's only when my skin changed on my breast that I panicked and took up the offer of the double mastectomy with reconstruction. That was on 30th April. Three weeks later, I was told there was cancer in my breast tissue and was sent for a PET scan and ultrasound on lymph nodes. My lymph nodes looked 'exemplary' considering I had surgery only 3 weeks before, they weren't even swollen. I was optimistic attending the clinic on Tuesday for the results of my PET. I learned that I have HER +3 cancer which has spread to my liver and a spot also found on my pelvic bone. Was told it's incurable but manageable with treatment. I'm devastated. I don't see the oncologist until next week. I'm so, so, scared. I have zero symptoms of any nature. I've seen a dentist for a risk assessment (form given by Breat Care Nurse) as one of the treatments I know of is Zoledronic Acid. I now have to have a tooth out next week. Then yesterday all I felt was sick, tired and the need to rest. Now crazy thoughts going through my head that the cancer is rapidly spreading throughout and I'm not going to survive. My husband and adult children are stepping on eggshells around me. I'm putting on a show for them when in reality I am so scared. Keep saying to myself, wait for oncology. I just feel trapped in my body. The surgical bra isn't helping either, I feel strapped up. Just wondering if anyone has any tips that can get me through to Wednesday for oncology appointment. I put this up in 'new to community' group and was advised to join this one. Apologies in advance if you've read it already. Any help, reassurances welcome.

  • Hi   I am one if the community champions on this site. I have secondary cancer. My spread was also to my liver.

    I am sorry your cancer has spread to your liver and pelvic bone. Unfortunately cancer can spread through blood as well as lymph nodes - my tnbc spread to my liver despite being a small breast tumour because it had managed to form close to a blood vessel and grew into it. 

    Oncology will have some things to propose to you.  For example: The HER receptors can be targeted. Your BRCA1 gene defect might make you eligible for PARP inhibitors. Just because it’s classed as incurable doesn’t mean all is lost. I have been metastatic since 2022 and achieved remission with treatment. For more than 2 years I have had no interventions other than regular scans. No one can tell you it’s going to be ok but it’s almost certainly not going to be as bad as you fear. 

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    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    I am a Macmillan volunteer.

    I have metastatic Triple Negative Breast Cancer, in remission

  • So I met the oncologist. My cancer was 'incidental' I'm unclear what that means - guessing it was found by accident? I'm also stage 4 - again not too sure what this means. 

    My treatment plan is 6 cycles of chemo Docetaxel (each cycle 3 weekly), ongoing 3 weekly injections to target HER2 Phesgo and 6 monthly injections for the bone Denosumab.  I've bloods, echo and port dates made. 

    Has anyone experienced any of these treatments? Can you share your side effects with me? Thank you

  • I am stage 4 grade 2, triple positive with liver mets. Diagnosed end March. My treatment plan set up as 6 cycles of Docetaxol 3 weekly, with Phesgo injections, to continue afterwards, and hormone therapy. I am 4 days post 3rd cycle. Side effects for me personally have so far been consistent with nothing more than tiredness for around the first 2-3 days but i think that’s down to steroids. Then the fatigue and leg pain hits me hard for a couple of days along with general aches. . It's more like restless leg syndrome with aches, but trying to get up and move a bit really helps. I have been unfortunate enough to also have very dry mouth and sores but they do give lots of different meds to combat these. I have generally then started to pick up and go about as much normal daily activities as i can manage, feeling much better by week 3 ready to go again. I have been getting through it by thinking i now know what’s coming but i also know i can get through those hard days. Can’t believe im half way through my treatment already, the time goes fast as i remember thinking how am i going to get through this. 

  • Thank you for sharing your experience it is really helpful and I'm truly grateful Nicky. I know everyone experiences chemo differently but I am hopeful after reading yours as the side effect list is freaking me out! Can I ask ... Did you lose your hair? If so, How quickly after treatment did it go?

  • Hi Emma, It is a very daunting experience and untill your actually on the treatment road you read all the horror stories and dread it. As long as you focus on knowing your body does get you through the bad days, your oncologist and BC nurse are also there to help if side effects are really troublesome. I have lost quite a bit of my hair, and expected to. To be honest i have been lucky as mine didn’t start to come out untill just after my 2nd cycle. I know lots of people experience hair loss within a couple of weeks of their 1st. I also do still have some, enough to poke out the bottom of a chemo hat, so i’m ok with that. I was offered cold capping but weighed up the pros and cons, and the decision for me was there are no guarantees it will work and i’d been told it’s quite uncomfortable/painfull so i decided i’d rather be comfortable during treatment. I believe it also adds around half hour to start and 1 hour to the end of treatment, making a very l long day. 

    Do you have a start date for your 1st treatment? Hope it goes well and i e helped a bit x 

  • Thank you again. My treatment has been delayed due to a tooth being extracted the other day. I've been given week beg: 6th July as a starting point. My port gets fitted that day at a different hospital. I see the oncologist again in 2 weeks time, so the dates might change. I'm guessing it depends on my blood test results. They were keen to start chemo and HER treatment and delay bone treatment until my gum healed, so I'll know more in a couple of weeks. It's just so difficult to wrap my head around. I am currently living my 'normal' life. Not one symptom.