Stage much worse than I expected

[LilyMir]

I am so distraught friends. My surgeon still did not receive the mutation/biomarker results but he called me about the other parts of the final pathology report saying it stages me T3N2. The adenocarcenma that looked under 2.7cm on my contrast CT ended up being 5cm in pathology report. Despite one node on same side (ipsilateral) being positive (8 other node stations were negative), the pathologist set me at N2 since it is a node in the level 5 AP window (aerate pulmonary window 5) which seems controversial (some would stage it T3N1). So here I am anyways finding myself with stage 3B diagnosis despite them thinking it would be stage 1 then 2 originally. I am devastated to say the least. I keep staring at my little boy sobbing wondering if I would be here long for him. I am in a very dark place and need to find my way out friends. Still waiting for biomarker testing results, this is the third week waiting. I am so deeply sad and scared.

[Roz]

Hi LilyMir,

It's devastating to learn that you have lung cancer no matter what the stage. 

I'm so sorry that your stage is different than you initially thought. 

Once you get the results of your biomarker testing, there may be a targeted therapy.

If not, your team will hopefully have other treatment options for you. I totally understand your feelings of fear and sadness. There are many long term cancer survivors on this forum and as you hear from each of them you will realize that HOPE is alive and well in our community.

We are here for you.

Please ask any questions too!

Best,

Ro

 

[Karen_L]

LilyMir,

I'm so sorry you are in such despair right now. I won't try to talk you out of it because I understand that despair all too well.

Try to take a couple of very slow, deep breaths. You are there with your little guy right now; try to focus on the current moment. By leaping into the unknown future, our brains seem to automatically head to the darkest places. 

There are new treatments literally every day. There are people who have been diagnosed with very advanced lung cancer who are living rich and fulfilling lives. One of them is in my local support group. He's just starting his 16th year with Stage IV lung cancer. 

Glad you're here.

Karen

[LilyMir]

48 minutes ago, Karen_L said:

LilyMir,

I'm so sorry you are in such despair right now. I won't try to talk you out of it because I understand that despair all too well.

Try to take a couple of very slow, deep breaths. You are there with your little guy right now; try to focus on the current moment. By leaping into the unknown future, our brains seem to automatically head to the darkest places. 

There are new treatments literally every day. There are people who have been diagnosed with very advanced lung cancer who are living rich and fulfilling lives. One of them is in my local support group. He's just starting his 16th year with Stage IV lung cancer. 

Glad you're here.

Karen

Thanks so much Karen for the encouragement and kind words. Indeed I keep reading about long term survivors on this forum and it fills me with hope. The mind keeps relapsing to despair despite my efforts to get over this devastating diagnosis since my boy is very young and this misery following 2 pandemic years and doctors missing my tumour staring at them for years is soul crushing. Will try to stick to hope as the alternative is not an alternative that is compatible with living. One day at a time I keep being advised, so I will try reverting to this as I continue this terrible journey. I am so thankful I found you guys!

[hillham]

Lily,

I feel your pain for sure. I was also diagnosed at stage 3b with a teenage daughter. If you can, forget about the stage. People in all stages have positive and negative outcomes, so let's hope that yours will be positive. New advances are happening all the time, and that's the truth. Hang in there and give that kid a squeeze! 

K 

[Justin1970]

Hi lily 

Sorry to here how sad and depressed you are it is a horrible time but please try and stay strong I know it's difficult but you will get through it, I was staged at 3b and went through all the same feelings as you are going through but once the treatment starts you will feel a bit better knowing something is being done to help you 

All the best and take care 

Justin x 

[Judy M2]

You are not alone, Lily. We have many young parents who are in your situation. I'm older than you but was also diagnosed at Stage IIIB in October 2019. I've been NED (No Evidence of Disease) for a year now. 

As a young person with lung cancer, it's very likely that yours is caused by a gene mutation. So the results of your biomarker testing will be essential to getting you on the right treatment plan. 

You have to process this and go through a period of grieving, but you CAN live, and you have someone to live for. Try to focus on today and keep busy while you wait for your results. 

[LilyMir]

On 4/29/2022 at 12:21 AM, Justin1970 said:

Hi lily 

Sorry to here how sad and depressed you are it is a horrible time but please try and stay strong I know it's difficult but you will get through it, I was staged at 3b and went through all the same feelings as you are going through but once the treatment starts you will feel a bit better knowing something is being done to help you 

All the best and take care 

Justin x 

Thanks so much for your encouragement Justin. Today I got an appointment with an oncologist for May 18 and it certainly triggered some form of relief, knowing there is something more that will be done soon. However, I am dreading chemo and associated problems, and wonder if I will click with the new doctor as I did with the surgeon. My surgery was good but it breaks my heart that they found much more malignancy than expected and a fully invaded lymph node. The anger over missed diagnosis years ago still makes me livid! How are you doing? I understand your kids are here on the forum and feel so much for them. My kid is not even 6 and it breaks my heart how our illness affects our kids. 

[Justin1970]

Hi lily 

I'm so pleased your surgery went well, try not to worry about the chemotherapy it's not as bad as you think I did feel a bit nauseous but had anti sickness tablets to sort that out, I can understand your anger about it being missed before but there's no point dwelling on the past I did that and it doesn't help, just concentrate on getting the treatment you need and getting better so you can live your life with your little boy,it will get easier just hang in there I went through terrible depression and grief of the life I had lost but I did get through it and so can you, you may get knock backs like I did but they will treat you with whatever you need, I'm doing alright thanks I have a body ct scan next week to see what's going on and an MRI scan on my brain to see if the mets have reacted well to the gamma knife radiosurgery so bit of a worrying time all we can do is hope for good news 

Take care Justin x

[Chuck K]

Hi Lily

I too was devastated when spot was caught on an exray six months ago. In the beginning it looked like it was caught early enough to have it removed but after pet scan and biopsy I ended up with stage 4. I really had a hard time dealing with this diagnosis. The depression and sadness consumed me in the beginning. I did start chemo did one round and the biomarker test came back positive for alk mutation. Finally some good news. The first 3 month scan shows the original cancer that was found in the beginning is not showing up on the scan ,dr said it was gone.I returned to work and I'm living my life. Lily there is lots of effective treatments for this disease so hang in there .I'm praying for you and your little one and fingers crossed for the biomarker test .It will get better

Take care

[Kelvin4426]

Hi lily I'm sorry about ur diagnosis. My mom was just diagnosed with stage 3b 2 weeks ago and has an appointment this Friday for what I believe is her treatment. If u ever wanna talk im here and you and my mom can beat this together!

[LilyMir]

1 minute ago, Kelvin4426 said:

Hi lily I'm sorry about ur diagnosis. My mom was just diagnosed with stage 3b 2 weeks ago and has an appointment this Friday for what I believe is her treatment. If u ever wanna talk im here and you and my mom can beat this together!

Thank you Kelvin, and so sorry your mom is going through this too! Yes indeed we all need to stay positive and beat this terrible disease. Since my diagnosis, I have been battling shock and despair with some days being better than others but I always go back to hope (so many long term survivors on this forum remind you that there is indeed a lot of hope). I see you are in Vancouver and so am I.  I was told we have one of the best lung specialists in Canada and hope it is true.  My appointment is 2 weeks away and the wait it terrible. I had VATS surgery and they need me to recover first, I guess.

[Kelvin4426]

2 minutes ago, LilyMir said:

Thank you Kelvin, and so sorry your mom is going through this too! Yes indeed we all need to stay positive and beat this terrible disease. Since my diagnosis, I have been battling shock and despair with some days being better than others but I always go back to hope (so many long term survivors on this forum remind you that there is indeed a lot of hope). I see you are in Vancouver and so am I.  I was told we have one of the best lung specialists in Canada and hope it is true.  My appointment is 2 weeks away and the wait it terrible. I had VATS surgery and they need me to recover first, I guess.

Wow I'm so glad you are from Vancouver! I've been asking everywhere if vancouver was a good place for cancer patience and been told they were one of the best which gives me so much hope. I have a son and I always get down thinking one day he's gonna ask where grandma is and I'll be in peices. Please keep in touch and I will aswell. Again you and my mom will beat this!

[LilyMir]

We keep in touch for sure. Let me know how your mom's first appointment goes. Who knows, maybe we will end up with the same oncologist! I totally get the anguish. I am 49 and my boy is not even 6. My heart breaks every time I contemplate "what if" and it is so debilitating to think bad thoughts. As everyone on this wonderful forum and at home reminds me, focus on positive outcomes and take it one day at a time. Hard to do (today was a terrible day for me) but tomorrow is a new day. 

[Kelvin4426]

13 minutes ago, LilyMir said:

We keep in touch for sure. Let me know how your mom's first appointment goes. Who knows, maybe we will end up with the same oncologist! I totally get the anguish. I am 49 and my boy is not even 6. My heart breaks every time I contemplate "what if" and it is so debilitating to think bad thoughts. As everyone on this wonderful forum and at home reminds me, focus on positive outcomes and take it one day at a time. Hard to do (today was a terrible day for me) but tomorrow is a new day. 

May I ask were u a smoker my mom was a non smoker yes I will private msg u her oncologist once I get their name!

[LilyMir]

Never smoker, organic home cooking, careful everything! Terrible luck I guess but I am learning of lots of women my age getting this, who never smoked; it seems there is something that renders women susceptible and I wonder if it is hormonal. Sure please message me when you know more about the treatment plan. I am so nervous about care at BCCA but have heard they are nice from other unfortunates who needed care there. My professional contacts say lung specialists are quite competent so I am hopeful it all turns out to be true. Good night and best wishes.

[EMandM]

Hi Lily,

So sorry you’re in this position too. I was diagnosed Stage 4 last December - I’m also a mum (I have a 1 and 5 year old), otherwise healthy never smoker. It completely knocked me sideways… it was the last thing I was expecting. I was just so sad at the beginning, and felt so hopeless. The thing that has helped me is to stop trying to second guess what will happen next. Instead, I have learned to (mostly) live in the moment, be present for my kids and take it one day at a time (sometimes one minute at a time). That’s definitely helped my mental health!! I’m also seeing a Psychologist who specialises in oncology… and she has also really helped me! (My cancer center offered this alongside treatment, so might be something worth asking your oncologist about).

Like you, I was also dreading chemo, but it was nothing like what I was expecting from what I’d seen on TV etc… While it is tough, it is bearable. I did 4 rounds and it has massively reduced my tumours, so I’m very thankful for that! So please try not to worry about it. Its also very possible that you won’t need it. Given your demographics, it’s quite likely that you have an EGFR (or other) mutation that has targeted treatment options. It also depends on what your PDL1 status comes back as. There are so many treatments available for lung cancer these days, there are many reasons to have hope and be positive… so please hang on to that!

Take care,

Gini x

[BridgetO]

EMandM (Gini) I appreciated everything you wrote to Lily. What you said about living in the moment and not trying to second guess what will happen next is exactly what I needed to hear right now. I was just hospitalized for a bowel obstruction related to treatment for a gynecologic cancer I had 11 years ago. It was resolved quickly without surgery. But I got deep into Dr Google and found out all the things that could happen.  I was seeing myself with an ostomy bag. Reading your post was a wake up call- "don't do that, live your life now". This is something I often tell others on these forums, but it's easy to forget it for myself, so thanks!

What you told Lily about chemo and possible alternatives was great, too.

[LilyMir]

9 hours ago, EMandM said:

Hi Lily,

So sorry you’re in this position too. I was diagnosed Stage 4 last December - I’m also a mum (I have a 1 and 5 year old), otherwise healthy never smoker. It completely knocked me sideways… it was the last thing I was expecting. I was just so sad at the beginning, and felt so hopeless. The thing that has helped me is to stop trying to second guess what will happen next. Instead, I have learned to (mostly) live in the moment, be present for my kids and take it one day at a time (sometimes one minute at a time). That’s definitely helped my mental health!! I’m also seeing a Psychologist who specialises in oncology… and she has also really helped me! (My cancer center offered this alongside treatment, so might be something worth asking your oncologist about).

Like you, I was also dreading chemo, but it was nothing like what I was expecting from what I’d seen on TV etc… While it is tough, it is bearable. I did 4 rounds and it has massively reduced my tumours, so I’m very thankful for that! So please try not to worry about it. Its also very possible that you won’t need it. Given your demographics, it’s quite likely that you have an EGFR (or other) mutation that has targeted treatment options. It also depends on what your PDL1 status comes back as. There are so many treatments available for lung cancer these days, there are many reasons to have hope and be positive… so please hang on to that!

Take care,

Gini x

Thanks so much Gini, I am very sorry you too are going through this but glad you are responding to treatment so well. Your kind words help so much and ring true. I am trying to get out of the sad and hopeless state, not always as successfully as I'd like. The waiting is so brutal, it has been almost a month since my surgery and they still do not have genetic results for me. I believe they did standard pathology first, which took about 3 weeks with the Easter break, and then sent for genetic testing, which means I may be waiting for another week. The loss of any ability to plan for or control  anything has been so tough for me.

I still grieve for my old life, before diagnosis. I was supposed to be doing research at one of the best EU cancer research hospitals for my sabbatical year. Instead, I found myself a cancer sudden patient. Rather than visiting my colleagues, I found myself sending them my data for opinion. However, in the process I discovered one of them had VATS years back (caught early, doing great), and another relative of hers (young woman too) has stage 4 but has been living and working normally for 8 years now. A lot of survivors, including many younger never smoker women, seem to be doing well for long periods. Let us hope everyone battling this disease here be so lucky.

BTW, did you tell your older kid about your illness in detail? Mine knows I am sick and had surgery but I was not sure I want to say a lot about cancer, at least until I know more. Sometimes I battle the ridiculous feeling blaming myself for getting sick, for not having my child much earlier in life and all sort of silly thoughts. Today I spoke with a councillor but really feel no one can help me but myself. I need to learn a whole new way of living that is focussed on the now, not the future. It is very hard to do but seems there is no alternative. Take care.

[LilyMir]

1 hour ago, BridgetO said:

EMandM (Gini) I appreciated everything you wrote to Lily. What you said about living in the moment and not trying to second guess what will happen next is exactly what I needed to hear right now. I was just hospitalized for a bowel obstruction related to treatment for a gynecologic cancer I had 11 years ago. It was resolved quickly without surgery. But I got deep into Dr Google and found out all the things that could happen.  I was seeing myself with an ostomy bag. Reading your post was a wake up call- "don't do that, live your life now". This is something I often tell others on these forums, but it's easy to forget it for myself, so thanks!

What you told Lily about chemo and possible alternatives was great, too.

Sorry to hear about your hospital stay Bridget but seems they were very effective in treating you non-invasively, which is amazing. Indeed, bizarre how life throws things at us when we least expect it but amazing how resilient we can be. Wishing you the best, take care.

[Kelvin4426]

20 hours ago, EMandM said:

Hi Lily,

So sorry you’re in this position too. I was diagnosed Stage 4 last December - I’m also a mum (I have a 1 and 5 year old), otherwise healthy never smoker. It completely knocked me sideways… it was the last thing I was expecting. I was just so sad at the beginning, and felt so hopeless. The thing that has helped me is to stop trying to second guess what will happen next. Instead, I have learned to (mostly) live in the moment, be present for my kids and take it one day at a time (sometimes one minute at a time). That’s definitely helped my mental health!! I’m also seeing a Psychologist who specialises in oncology… and she has also really helped me! (My cancer center offered this alongside treatment, so might be something worth asking your oncologist about).

Like you, I was also dreading chemo, but it was nothing like what I was expecting from what I’d seen on TV etc… While it is tough, it is bearable. I did 4 rounds and it has massively reduced my tumours, so I’m very thankful for that! So please try not to worry about it. Its also very possible that you won’t need it. Given your demographics, it’s quite likely that you have an EGFR (or other) mutation that has targeted treatment options. It also depends on what your PDL1 status comes back as. There are so many treatments available for lung cancer these days, there are many reasons to have hope and be positive… so please hang on to that!

Take care,

Gini x

Hi may I ask what ur treatment looked like

[LilyMir]

On 5/9/2022 at 1:58 AM, EMandM said:

Hi Lily,

So sorry you’re in this position too. I was diagnosed Stage 4 last December - I’m also a mum (I have a 1 and 5 year old), otherwise healthy never smoker. It completely knocked me sideways… it was the last thing I was expecting. I was just so sad at the beginning, and felt so hopeless. The thing that has helped me is to stop trying to second guess what will happen next. Instead, I have learned to (mostly) live in the moment, be present for my kids and take it one day at a time (sometimes one minute at a time). That’s definitely helped my mental health!! I’m also seeing a Psychologist who specialises in oncology… and she has also really helped me! (My cancer center offered this alongside treatment, so might be something worth asking your oncologist about).

Like you, I was also dreading chemo, but it was nothing like what I was expecting from what I’d seen on TV etc… While it is tough, it is bearable. I did 4 rounds and it has massively reduced my tumours, so I’m very thankful for that! So please try not to worry about it. Its also very possible that you won’t need it. Given your demographics, it’s quite likely that you have an EGFR (or other) mutation that has targeted treatment options. It also depends on what your PDL1 status comes back as. There are so many treatments available for lung cancer these days, there are many reasons to have hope and be positive… so please hang on to that!

Take care,

Gini x

Hi Gini, thanks again for your thoughtful advice. Indeed you were right, today I was told I am EGFR positive! I still will undergo chemo then targeted therapy, even possibly radiation (they seem to want to be aggressive in treatment). I am hoping for the best!