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New diagnosis

Hi lovely people,

This is my first post here and I apologise in advance that it is a big novel.

My beautiful mum (who is currently 76 years)was diagnosed back in 2019 with stage 1 NSCLC. Back then, they did a lobectomy of her upper right lung and also removed a wedge from the lower lobe. No other treatment followed.

Since then, Mum’s lung specialist has been keeping a close eye on her with regular scans and check ups etc. a new spot lower right lung showed up on her PET scan a couple of years ago, it was biopsied but all came back ok. There have been slight changes with each scan, but nothing too alarming, that is until now. Her specialist said it could just be scar tissue or persistent infection.

Over the past 12 months Mum’s breathing has progressively worsened as has her horrid coughing fits. Her most recent PET scan (sept 2022) showed significant changes when compared to her March 2022 PET scan. This led to a bronchoscopy and biopsies a couple of weeks ago which unfortunately came back with the diagnosis of Stage 3 Adenocarcinoma (it’s all about an inch away from the spot we have been watching). There is also a new very small spot on her left lung, but that is currently too small to biopsy, so we have to watch and wait with that one.

Unfortunately, this time around surgery is not an option. We met with her medical oncologist last Thursday evening (who cured my dad 18 years ago of small cell carcinoma…so we have great faith in him). We have an appointment with a radiation oncologist in 3 days times.

Details on the report start “the tumor cells are positive for TTF-1 and are negative for PD-40” also states “AK-1, PD-L1 and ROS-1 immunohistochemist and EGFR Mutation testing have been requested”.

The ultimate plan of attack is…PLAN A: to hit mum with extensive radiation therapy (5 days per week over several weeks), along with chemotherapy and immunotherapy. If so, he said
PLAN B: will be to hit with more aggressive chemo and immunotherapy in the hope to shrink it enough to be able to then be zapped with radiation. Hoping to obviously know which plan we are going with after seeing the radiation oncologist on Friday (I have everything crossed right now).

I know that every person is different. However, I am just wondering if anyone of you wonderful people (or your loved ones) have had a similar diagnosis? I am so terrified for her, her breathing and cough seems to be worsening by the day. Surprisingly though, her oxygen levels remain quite impressive, despite struggling to breathe. If any of you were impacted by extremely persistent coughing and dreadful shortness of breath…did you find anything that worked to give you or your loved ones that you care for any relief?

Our situation is quite complex. Mum is the carer for my dad, who was diagnosed with vascular dementia 3 years ago. So mum puts a lot of pressure on herself to stay as well as possible. Both of my siblings and their families live interstate (my sister is about 8 hours away and my brother is about 14 hours away). I am a counsellor and work from home in my private practice. After receiving mum’s new diagnosis, I have told my parents that they are my priority and I will be caring for them both. I have contacted all of my clients today to explain that effective immediately, I will no longer be practicing and I will organise transition plans to transfer them to another practitioner asap (I will only be retaining a few clients that I know will be happy to award me flexibility when it comes to their sessions and they will be fine to work around my mums treatment schedule. I do feel bad, however I know it is not only the right thing for myself and my parents, but also for my clients as well because at present with all going on, I don’t feel I have the mental or emotional capacity to support clients in the way they deserve.

Last week, my dad said to me “Darling, I am sorry but if something happens to mum, I will be right behind her as I can’t do life without her” that totally ripped me apart, but I know they are both so scared right now.

I would LOVE to hear people’s success stories if you or a loved one has had positive outcomes with a similar diagnosis and treatment plan. I am trying to be strong for my parents, but can’t help crumbling as soon as I am out of sight.

If you have made it this far, thank you SO much for taking the time to read. Any advice or guidance as to how on earth I am going to juggle the coming weeks/months, it was be hugely appreciated. I just want to arm myself with as much info as possible, so I can care for my parents and alleviate their stress and concerns as much as possible.

Have a lovely day, thoughts and prayers with you all x

  1. I am so sorry to hear all you and your family are going through. I have a somewhat similar story but my last diagnosis was caught early so I was able tohave surgery. I was originally diagnosed with Stage 3b, 22 years ago. I had surgery (right middle lobe removed) and chemo and that cancer never came back; however, while being monitored closely with scans, nodules started showing up as the years went by in my upper right lobe. Every now and then they make a movement, I will have to decide with my doctors a plan of action as due to previous surgery scar tissue, it may not be easily removed by surgery. In that case, I will be looking into radiation or proton treatment. While being monitored, last year a new nodule popped up out of the blue in my left lung. Due to being scanned/monitored, it was caught at Stage 1 and I had another surgery. Now I am being scanned regularly for recurrence in my left lung as well as for the nodules in my right lung.

    I understand every situation is different, but here have been so many advances over the years that hope is real. I hope others with similar experience to your Mom's join in on the discussion.

    I'm not sure where you live, but if at all possible, I'm a big believer in second opinions.

    You are an amazing daughter and you and your parents are blessed to be able to be together and to have you as their caregiver. Please reach out anytime, our community is here to share and support one another. Warmly, Alisa, Team Patient Leader

    1. Thank you SO much for your reply Alisa and thank you for sharing your story. I have everything crossed that things continue in a positive direction for you.

      We had the consult with my mum’s radiation oncologist today and so thankful that she is willing to give it all a go. Must admit we feel much better after meeting with her and having a clear plan of attack. She was so thorough, amazingly patient with answering all of our question and just an amazing human! She outlined the extent of the planned treatment and it is HUGE…hitting her with the heavy artillery. Her radiation schedule blew us a way a little. Mum is having treatment 5 days a week for 6 weeks, so 30 sessions in total along with chemo once per week, followed by immunotherapy. We know it is going to be a tough slog, but they have been completely open and explained that by hitting hard and fast…it will be the best chance for a more positive outcome. They are trying to fast track an endoscopy prior to the commencement of treatment to check out some PET activity in the esophagus. However, said that isn’t the main concern right now.

      The oncologist really put mums mind at rest and spent a lot of time showing her images of her brain and other organs to reassure her that at this stage, she is confident that there hasn’t been any distant metastases at the present time…thank goodness! So planning sessions next week for radiation and chemo education session and then all kicks off on 17th October. Mum walked out of there a different person knowing that all will be starting soon.

      We know it is going to be a very intense and difficult road ahead, but she is ready to give it her all.

      Take care and please know how much I appreciate you taking the time to reply x

      1. I am so glad to hear there is a plan in place for your mum and the oncologist eased her mind. Wishing her much success with her treatments. Please feel free to keep us updated, we are here for you both! Hugs xxx Alisa

    2. Hi . I can't personally speak to the treatments, but I did note that you said that samples were being sent to check for various mutations. This is a great and the results have the potential to change the treatment plans that have been laid out for you (see the article on the importance of biomarker testing: In addition, I want to concur with on the value of second opinions, sometimes if only to provide peace of mind that you have done what you can and are making informed decisions. Wishing you the best and please know that this community is here for you. Richard ( Team)

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