Forum Discussion
HER2+ Advanced BC Liver Mets
Hi, in the last month i have been diagnosed with HER2+ advanced BC liver mets. This has been a massive shock to say the least. I am 46 yrs and have had problems with my left breast for over 12 months now, with nipple discharge but negative mammogram results. So in early Jan I had an abnormal mammogram, 1 week later a biopsy, 1 week later advanced bc liver mets.
As I am sure you can all appreciate the diagnosis is one thing but dealing, or should I say trying to come to terms, digest the next steps has been extremely confusing and just plain scary.
Everything has moved extremely fast and I had my first day of Chemo yesterday, which will continue every three weeks for 18 weeks. I am still very confused about what a cycle means in relation to the whole Chemo journey. Is a cycle one lot of Chemo (18 weeks)? Sorry if that is a stupid question, but not sure. I am also unsure of whether I will only have one cycle of Chemo or if this happen again later. I'm sure that this will be determined by how well my body is 'dealing' with the bc. I am on Docetaxel (first 4 treatments) Trastuzumab and Peruzamab (whole treatment).
At this stage the next step will be surgery and then who knows after that.
I have been reassured that my Oncologist is the best here in the NT and I have no doubt this is correct. It has taken a few visits to get used to his bed side manner and delivery of results style - straight to the point - but am now thankful of his approach. I suppose that there is no use in beating around the bush. He is very methodical and matter of fact, which is good.... I think. When my husband asked about prognosis etc he was not very upfront and I suppose he isn't really in a position to be, all he kept saying was that it is not good. We understand very clearly that there is no cure for advanced bc but it was initially very frustrating as he did not seem to offer any kind of hope around new and emerging treatments or even prospectively of the success of Chemo, just that 80% of women react well to the Chemo. I am sure that I am not the only one who has experienced this so any advise would be greatly appreciated.
We are taking the view that advance bc is part of our lives and that we have to remain positive and learn to live with it and try to keep it at bay as long as we can. We have three beautiful supporting adult children and two 11 years olds so we are all in this together.
I would appreciate any advise around the journey and what I can do to better support myself and my family.
Thanks
Melissa
As I am sure you can all appreciate the diagnosis is one thing but dealing, or should I say trying to come to terms, digest the next steps has been extremely confusing and just plain scary.
Everything has moved extremely fast and I had my first day of Chemo yesterday, which will continue every three weeks for 18 weeks. I am still very confused about what a cycle means in relation to the whole Chemo journey. Is a cycle one lot of Chemo (18 weeks)? Sorry if that is a stupid question, but not sure. I am also unsure of whether I will only have one cycle of Chemo or if this happen again later. I'm sure that this will be determined by how well my body is 'dealing' with the bc. I am on Docetaxel (first 4 treatments) Trastuzumab and Peruzamab (whole treatment).
At this stage the next step will be surgery and then who knows after that.
I have been reassured that my Oncologist is the best here in the NT and I have no doubt this is correct. It has taken a few visits to get used to his bed side manner and delivery of results style - straight to the point - but am now thankful of his approach. I suppose that there is no use in beating around the bush. He is very methodical and matter of fact, which is good.... I think. When my husband asked about prognosis etc he was not very upfront and I suppose he isn't really in a position to be, all he kept saying was that it is not good. We understand very clearly that there is no cure for advanced bc but it was initially very frustrating as he did not seem to offer any kind of hope around new and emerging treatments or even prospectively of the success of Chemo, just that 80% of women react well to the Chemo. I am sure that I am not the only one who has experienced this so any advise would be greatly appreciated.
We are taking the view that advance bc is part of our lives and that we have to remain positive and learn to live with it and try to keep it at bay as long as we can. We have three beautiful supporting adult children and two 11 years olds so we are all in this together.
I would appreciate any advise around the journey and what I can do to better support myself and my family.
Thanks
Melissa
11 Replies
- Chemo is chemo, Melissa. It's all pretty standard and if you have confidence in your oncologist it should not matter where it is delivered. They are not chefs; treatments are very clearly defined and apart from circumstances where someone is not tolerating a drug if you are getting FEC (or what ever alphabet soup is prescribed) up there it is exactly the same as what someone in Melbourne or Sydney will receive.
The only advantage the southern states may have is access to clinical trials. That's a double edged sword if you have to travel for them as there is no transport subsidy for trial treatments.
I'm not sure if the quality of radiotherapy treatments varies from site to site or not and have no idea how you would get hold of that information.
Surgeons are another matter, particularly if you want reconstruction. That is something that needs some research when the time comes. - Hi Kari, thank you. I suppose its all bit of suck it and see really isn't it? Everyone is different. I am starting to get bit worried about having my treatment in Darwin but I will just have to see how that goes. I will remain positive... Melissa
- Hi Melissa, Its so overwhelming isn't it!! My inital diagnosis straight up was HER2+ plus met in verterbrae. Following chemo and radiation (none to the verterbrae) my scans are showing that the bone "started healing" and is no longer detected. Of course, it doesn't mean I am remission - they like to call it "responding well to treatment", which means I have a life long road of continual treatment, scans etc and at 44 it is sometimes really annoying.
I had acupuncture a few days after each chemo session, not sure if that is what helped me get through it quite easily compared to others. It was either that or having selfish teenagers in the house meant I didn't have time to lay around feeling sorry for myself!! :D
I feared it was all over for me, but there are so many ladies on here who have survived without too many complications for many years. After all the treatment you will hopefully be doing a happy dance with the results.
Kari - HI Ladies, thank you all for your kind words and advise. I do have two wonderful Breast Cancer Nurses that I am in contact and their support and advice has been invaluable. Not feeling too bad so far after Chemo, a small amount of nausea but that is about it for the moment. I finished taking my steroids yesterday and I am so thankful. They made me a bit agitated and cranky, not good for husband and loving children. Ok now though. This is only the beginning of the journey for me and I take great strength from reading about what other woman are going through, it helps greatly. Thanks Melissa
- Hi MelissaG, sending huge hugs to you. A diagnosis is hard enough to cope with let alone with mets - totally CRAPPY!!!! okay so the lovelies have given advice for you personally but there is also a section of this network for those who are family of the diagnosed : http://onlinenetwork.bcna.org.au/categories/supporting-someone-with-breast-cancer. Hoping that this can add a small bit to your peace of mind, wishing you all the best. Xx Cath
- on the note that Zoffiel just shared I have an awesome free app I use called Cozi it is a calendar shopping list etc...
it can be on either andriod or apple phones and anyone you add can see appointments etc.
What I really liked while going through treatment was I could add to the shopping list while the Kids were in town and they would see the new items on list and get it. .... good for when chemo brain is making you forgetful. - Hi Melissa,
That's really tough news. A common theme here is difficulty communicating with oncologists and specialists. I've come to the conclusion , after 10 years of cancer experience, that many are scientists first and doctors second and what we generally expect in the way of bedside manner is beyond some of them. As long as they get the job we sometimes have to compromise a little.
Breast care nurses are terrific at translating technical stuff into bite size pieces, if your health service doesn't have one, ask if there are options to link with someone remotely. The nurses in the oncology wards are also very knowledgeable, they won't give you advice as such, but can help you get a list of questions together so you are not struggling to remember things when you have appointments. They can also help you with the language so your questions are more precise.
My standard advise is never get admitted to a hospital without a thermos mug and take your own teabags and coffee (or whatever you prefer) Calendars and diaries are a must--you need something that your family can access that has all the names and phone numbers of doctors, specialists and hospitals on it as well as upcoming appointments.
Grab cards from everyone you consult with and put the date you saw them on the back. It can all become a bit of a blur and I personally hate struggling to recall anyone's name.
Best of luck.
Marg - Hi @MelissaG, Kath(primeK) has given you some great information and links the only other thing I thought of was
do you have a Breast Care Nurse ?
Here is a link to be able to look up if you have one local if you dont already have one..
http://www.mcgrathfoundation.com.au/OurMission/OurNurses/FindANurse
they can often break down some of the medical Jargon so you fully understand what is happening at what stage. Hi Melissa
Rest assured there are no stupid questions. You will have more questions as you continue your treatment, and there will be people here happy to advise as Kath has already done.
Your comment about your oncologist struck a chord - after my first meeting with mine, I felt I had been run over by a bus. But I have learned to appreciate how thorough he is and his honesty - my situation is less difficult than yours but I much prefer to know the whole story, I have found it easier to cope when I know what the real challenges are (and the real options).
Best wishes to you and your family.
- Hi @Primek, thanks for the quick reply. I have order the hope-hurdles package so await that with great anticipation.
Melissa
