Can not believe it.
Denhamia
Member Posts: 9 ✭
Shock, denial, anger - cant imagine how I can move towards acceptance.
Newly Dx. Initially was stage 2, then told stage 3 and now looking at stage 4 with lung mets. What the! This roller coaster is insane and I want to get off.
Found a lump 8 weeks ago, took a month to get into my rural GP, another 2 week wait for scans and a further possible month wait after this for biopsy (apparently). So instead spent a fortune flying myself to Sydney to the one stop shop at Sydney Breast clinic (they were amazing) scans, biopsies, pathology all on the same day with lovely nurses, surgeons and Breast GPs to consult with as well. Got the bad news of lymph node involvement that day (what a horrible trip home finding trains and sitting in the airport alone with this news).
4 days later with core biopsy results apparently better news of - Gd 1 slow growing highly hormone receptive and HER 2-ve Ca. Staging scans the next week, another week to get into the breast surgeon. Feeling good and starting to get my head around Mastectomy and some Hormone therapy and maybe some radiotherapy.
Then the bad starts flowing again not stage 2 now looking at stage 3 with potential Mets in lungs - What!. So Surreal when one is so fit and healthy. Now another 2 weeks wait and long distance travel to have more invasive investigations to confirm or discount this scary stage 4 Dx. On top of this had to go cold turkey off my HRT so everything aches, I cant sleep, I cant breath and the emotions are all over the shop and the anxiety is making this all 10x worse. Meanwhile I am trying to continue work and family life as normal!?
So unfair when I have finally got to a place in my life, happy in my newly set up little business, kids almost off doing there own thing and life was finally looking like I could start having some me time. I did everything right - regular and recent mammograms and health checks all good, but somehow this little nasty thing just some how snuck under the radar. Well damn! Deb
Newly Dx. Initially was stage 2, then told stage 3 and now looking at stage 4 with lung mets. What the! This roller coaster is insane and I want to get off.
Found a lump 8 weeks ago, took a month to get into my rural GP, another 2 week wait for scans and a further possible month wait after this for biopsy (apparently). So instead spent a fortune flying myself to Sydney to the one stop shop at Sydney Breast clinic (they were amazing) scans, biopsies, pathology all on the same day with lovely nurses, surgeons and Breast GPs to consult with as well. Got the bad news of lymph node involvement that day (what a horrible trip home finding trains and sitting in the airport alone with this news).
4 days later with core biopsy results apparently better news of - Gd 1 slow growing highly hormone receptive and HER 2-ve Ca. Staging scans the next week, another week to get into the breast surgeon. Feeling good and starting to get my head around Mastectomy and some Hormone therapy and maybe some radiotherapy.
Then the bad starts flowing again not stage 2 now looking at stage 3 with potential Mets in lungs - What!. So Surreal when one is so fit and healthy. Now another 2 weeks wait and long distance travel to have more invasive investigations to confirm or discount this scary stage 4 Dx. On top of this had to go cold turkey off my HRT so everything aches, I cant sleep, I cant breath and the emotions are all over the shop and the anxiety is making this all 10x worse. Meanwhile I am trying to continue work and family life as normal!?
So unfair when I have finally got to a place in my life, happy in my newly set up little business, kids almost off doing there own thing and life was finally looking like I could start having some me time. I did everything right - regular and recent mammograms and health checks all good, but somehow this little nasty thing just some how snuck under the radar. Well damn! Deb
9
Comments
-
Deb!
Your heading describes most, along the lines of what the! It's certainly a shock!
Good on you for making the trip to Sydney to a dedicated facility.
Once you have a complete diagnosis then it's time to concentrate on the treatment plan.
The BCNA website will offer you a plethora of information and podcasts.
In the meantime maybe consider ringing BCNA Helpline, link below
https://www.bcna.org.au/helpline/
Best wishes
Take care
4 -
Deb I am so sorry to read your news.
Take a deep breath. That is so brave and courageous of you to go interstate to get the ball rolling instead of waiting longer for rural treatment. Good on you for doing whats best for you. I am sorry you are on your own while you have appointments and get results. Cancer council can put you in touch with a counsellor if you need to reach out. Have they put you in touch with a breast cancer nurse. Sending you my thoughts and prayers.4 -
Hi @Denhamia, this news is a shock and it takes time to process it all. I understand it's alot to take in. You're being as proactive as you can be and your treatment team will work out a plan.
When you have a plan it is a little easier. I hope your results are ok and your treatment will be good to you. counselling does help.
There are lots of treatments. All is not lost, even for stage 4. We are at a time when there is much available and many members live for years and years with stage 4. Lotsof members with stage 3 recover completely.
For now it's one step at a time. Deep breaths and a little exercise will help with the stress at this time. Eat well and look after yourself. Do what you have to do to get through the next few days until you get the plan.
It's good you reached out help. We are all here for you.6 -
@Denhamia. Great you are getting some answers. Though Im sorry they’re not ones you wanted to hear. Once the team have all the details in frint of them they will then sort the best way forward for your particular circumstances. They waiting is the hardest part.Im still here coming up for 8 years. Mets known for 5 of those. My chemo surgery and rads seems such a long time ago.When my mets were confirmed my onc said its not as bad as it was for our mothers. People are living longer now thanks to all the research and development of drugs and treatments better targetedKeep us posted on how your going it can become a bit if a diary. Also the my Journey App is very useful6
-
@Denhamia sending you virtual hugs- what a lot you’re processing and grappling with.The unfolding diagnosis sounds incredibly tough.I was triple positive ie HER2 positive, oestrogen and progesterone positive and finished my treatment, surgery and radiation therapy in April. If it helps, I am happy to answer questions/expand on my experience with the HER2 positive treatment .4
-
Thank you all for your wise and supportive comments and suggestions. Thank you for the virtual hugs. This is not a club I ever dreamed of being a part of, but I am finding there is a wealth of information and support out there so if I had to get the big C, this was the club to be in. I have my EBUS (bronchoscopy/lymph node biopsy) this week and lung biopsy the week after if needed (which I hope I don’t have to have). Although I live rurally and have to travel at times, I am discovering that I have a great team supporting me locally on this journey and who really do seem to care. For a while I just felt like I was accelerating full speed into a concrete wall with no way of stopping. I have now put myself into cruise mode and trying to feel the wind in my hair, taking each step as it comes. I’m on Letrozole now while I wait and this has calmed my anxiety as I feel like I am doing something to slow everything down during this waiting game and so far my body is coping surprisingly well. Here’s hoping the next few tests are all clear and I can finally have a treatment plan. Thank you again all. 🌺7
-
All the best for your biopsies this week @Denhamia xx.
As you do have to travel for some of your treatment, consider joining the Rural & Regional Private group as we have lots of info there for fellow 'travellers'. Your GP will have to sign off the original IPTAAS Document (re specialists that you see - a different form is needed for each one that you have to travel to see.) Then there is the 'travel diary' that I get the Specialist's receptionist to sign off as well (several trips can be made on the one page, so that you can claim all of them at once.) There is a 12 month timeframe to make the claim in.
You are covered for both fuel and a percentage of accommodation, if you need it, for travel that is at least 100k away .... or if you run up 200k in short trips over a week. (If you stay with family or friends, there is also a $20 co-payment/day.)
https://onlinenetwork.bcna.org.au/group/28-living-in-regional-rural-and-remote-areas
Also check out this post that has a lot of info on the forum - and some other areas you may like to take part of .... you can show off your art & craft, garden, furkids and other bits ... also info on going to hospitals & how to 'self monitor' yourself with ticksheets on how you are going xx
https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-new-online-network-members#latest
I hope you have good support from family & friends .... lean on them, and if they offer assistance/help - let them help you xx It can be anything from mowing your lawn, to pickup the kids from school .... Make sure you have someone with you at your appointments for physical and mental support - and consider recording your meetings, as it is very difficult to remember everything that is said at the time. xx
Keep busy doing what you love doing .... maybe cook up some meals & freeze them, so that on days you don't feel like cooking - you have something 'ready to go'! (Specially for after any surgery, too.)
take care, sending big hugs xx
Here is some info on Patient Travel Schemes for all states (accurate as of 2023) - check out the NSW column ....
https://www.ruralhealth.org.au/sites/default/files/publications/pats-fact-sheet-and-guide-2023.pdf
3 -
I have just been diagnosed with early stage invasive lobular carcinoma in my left breast. The shock and horror of the diagnosis has left me a mess. For a very healthy person, I couldn't believe it. Always had my two yearly mammogram and no symptoms at all! The staff at Breastscreen Qld have been amazing...so kind and empathetic. I am now to make an appointment with the surgeon. Trying to stay positive and work out how to tell my family is so hard. This online group seems a wonderful support. Be strong everyone says. So hard.2
-
@Mez_BCNA Please move LJS to her own page so that people can see she is a newbie. Thank you. @LJS People will come online and help out. The diagnosis is hard to accept. Once you have a plan going forward it helps. People telling you to be strong doesn't help. It isn't happening to them! Go for a drive to the middle of nowhere and scream. Loud and long. Getting that out relieves some of the pressure. I just went out into the middle of my suburban street and screamed. We live in such a "caring" society that no-one did a thing about it and they didn't know I had just been diagnosed. Just as well I wasn't being attacked by someone. My diagnosis came nine months after a mammogram all clear and like you, I was healthy. Sending a huge virtual hug.2
-
@LJS I have created a dedicated discussion for you, please find via the link https://onlinenetwork.bcna.org.au/discussion/26689/invasive-lobular-carcinoma-diagnosis#latest1
-
Lots of tears, feelings of hopelessness and now I am sitting back and dealing with the reality that life will never be the same. Stage 4 confirmed hilar lymph node positive on EBUS which likely means the lesion seen in my lungs is Mets. So I am apparently now classified as a De nova stage 4.Seeing oncologist tomorrow to work out if there are any trials to jump on board or take the plunge and start ribociclib and the hopefully long journey in this alien new normal of living with this.
In the last month I have endured every radiology test and form of radioactive dye known to mankind. I have had scopes plunged down deep into my lungs. I have had more medical appointments in this last month than I have had in my entire life. I have read and listened to everything and anything I can find to educate myself, I have mastered the Iptass forms for remote and rural travel and the learning curve continues.
So glad there are so many forums, educational tools and pro active members to learn from and can hear us out. This journey is not OK, but knowing (although sad) there are others out there who have travelled this path ahead of us and others travelling along side us makes the journey a little easier. I can not imagine how my mother dealt with her grief and pain on her cancer journey 40 years ago when talking about it was taboo and resources non existent. Here’s to a more positive week and a glimpse of normal for a while.8 -
Hi @Denhamia,
So sorry to hear of your diagnosis and the medical tests you have had to endure so far. You sound like a strong woman who is going to knock this BC on the head and do all you can to keep it at bay.
Take each day as it comes and allow yourself to rest and have a good cry when you need to, let family take over the day to day as much as you can. I am sending you virtual hugs and so many best wishes for you treatment ahead.
Hugs xxx2
