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It’s the waiting that gets you…


EMandM

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Hi all,

I just wanted to introduce myself. Not really sure where to start, to be honest. I’m 40 years old, never smoker, generally fit and healthy. I have an almost 10 month old son and 5 year old daughter… so finding out I have a tumour in my right lung has totally knocked me sideways.

I’ve been having fairly extreme shoulder pain since March, but because of the UK restrictions with Covid, appointments were all virtual if they could be… so wasn’t actually physically seen by someone until November when I finally had an MRI. (Physio exercises and a steroid injections made no difference to pain). The MRI revealed a mass in my right lung and another in my shoulder blade. A CT last week has confirmed this (with some suggestion of hilar lymph involvement). I’m just in total shock. Angry that it has taken 9 months to get to this point. Devastated for the impact on my family. And I just keep thinking about my kids!

But I know there is so much we don’t know yet. I had a PET scan today and have my biopsy on Thursday. So I am desperately trying to stay positive… but I keep swinging between an all-guns-blazing fighting attitude and wanting to curl up into ball and cry. So far it’s the waiting and uncertainty that I’m finding the hardest. I am trying to carry on as if it’s not happening, but finding I have pretty bad nausea (and bone pain) which is making that trickier than I’d like. But hoping that will subside once treatment starts. If anyone has any tips on how to keep afloat during this initial waiting time, I’d be really keen to hear them!

Thanks,

Gini x

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Hi Gini!  Your post really hit home with me! I was diagnosed in March 2021 age 39, young kids, healthy, all the things you mentioned. I found a lump in my neck that led us to the findings of a tumor on my right lung and Mets to many lymphnodes. Prior to that in June 2020 I had severe left shoulder pain and bc of Covid only could do virtual visits and chiropractor visits. Finally went away after 6 months but I often wonder if that was my first sign of cancer, bc that’s the same side as my lymphnodes in my neck. Anyhow, I have seen been on targeted therapy bc I have the BRAF mutation. I have a CT scan tomorrow to check on things and I am a bundle of nerves.  I can tell you the anxiety of scans and testing does not go away, but as the folks told me at the beginning of my journey, the waiting until a treatment plan is the absolute worst. Once you have a treatment plan you will feel relief and ready to fight this beast. Until then carry on and have your crys in the shower but pick yourself right back up.  

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Gini,

Welcome here.

I'm so very sorry to learn you are on the cancer diagnostic trail. All of us completely understand your feelings of devastation and uncertainty. Waiting is the worst. I was diagnosed at a time where scans were recorded on film and had the additional delay of waiting for film development before a radiologist interpretation. Technology eliminated the film but did nothing to help with waiting for results. We call it scanxiety. Indeed, I was so bothered by waiting, I wrote a book titled Scanziety. The spelling difference stems from my challenge with spelling!

How does one keep afloat dealing with uncertainty and facing a diagnostic crisis? Thankfully, my time on the diagnostic trail was compressed to about a week. Yours is nearing 9 months; you are a mom and in pain! I agree with Shella's view that a treatment plan should provide some relief but if you have lung cancer, diagnostic uncertainty will segue to treatment uncertainty. Over the years of treatment and survival of disease recurrence, I've written about the difficulty of coping. Mindful that you do not have a diagnosis, you might consider reading here, here and here.

I do hope your diagnosis is completed quickly and that something other than lung cancer is causing your symptoms. But, if it is lung cancer know that many of us today are living full lives after treatment of Stage III and IV disease. Treatments today are much more effective than in 2004 when I was diagnosed. 

Stay the course.

Tom

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Thanks Shella677-I’m so sorry you are going through this too. It’s just so tough, especially with young kids! I really hope you get good news tomorrow at your CT scan - will this be your first one since starting treatment? Crossing all of my fingers for you!

I keep looking backwards and wondering whether other symptoms I’ve had over the years may have been warning signs of cancer. It’s difficult not to, isn’t it? I just feel like I can’t trust my body right now. But that way madness probably lies. Going to try to concentrate on putting one foot in front of the other right now, and take it one step at a time. There seem to be a lot of people on this forum who have such a positive outlook, and who have responded really well to all of these new treatments that just weren’t around several years ago. Trying to draw some strength from that-and I hope you are able to too! 

Let me know how the CT goes tomorrow.

Xx

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Thanks Tom! I’m honestly amazed by how many people are living with Stage III and IV disease… my initial Googling (don’t worry-I’ve stopped that now!!) made me feel like that would be impossible. I’m so glad to have found this forum, and (hopefully) be able to benefit from everyone’s knowledge and experiences. I will definitely have a read of your links. 

Thanks,

Gini x

PS - I love your sign off line of “stay the course”… I feel like that might become a bit of a mantra for me. 


 

 

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1 hour ago, EMandM said:

Thanks Shella677-I’m so sorry you are going through this too. It’s just so tough, especially with young kids! I really hope you get good news tomorrow at your CT scan - will this be your first one since starting treatment? Crossing all of my fingers for you!

I keep looking backwards and wondering whether other symptoms I’ve had over the years may have been warning signs of cancer. It’s difficult not to, isn’t it? I just feel like I can’t trust my body right now. But that way madness probably lies. Going to try to concentrate on putting one foot in front of the other right now, and take it one step at a time. There seem to be a lot of people on this forum who have such a positive outlook, and who have responded really well to all of these new treatments that just weren’t around several years ago. Trying to draw some strength from that-and I hope you are able to too! 

Let me know how the CT goes tomorrow.

Xx

I had a scan in July that showed lymphnodes back to normal and shrinkage of the lung tumor. Scan in October showed the same but there was a spot on my spine that was not visible previously or was missed , the dr is hopeful that the spot has been treated by my target therapy and not spreading but only one way to tell is another scan, so here we are. I will update.   It’s very possible you do not have lung cancer and I hope that’s the case, but if you do you have found the right spot

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Gini, 

Greetings. I'm fairly new here, myself, but I can definitely relate to the waiting and wondering. I have spent months and months trying to figure out how I, a fitness nut and never smoker, could have possibly gotten lung cancer. My conclusion: Who the h#$% knows? Which is what the pulmonologist said to me before a treatment plan was even developed. (Well, he didn't say h$%^.) 

I'm so sorry to hear abut the delays in your diagnosis, and I can understand your worry over your little ones. I hope you have some people you can lean on during this process. 

Sending courage and strength,

Karen

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20 hours ago, EMandM said:

Thanks Shella677-I’m so sorry you are going through this too. It’s just so tough, especially with young kids! I really hope you get good news tomorrow at your CT scan - will this be your first one since starting treatment? Crossing all of my fingers for you!

I keep looking backwards and wondering whether other symptoms I’ve had over the years may have been warning signs of cancer. It’s difficult not to, isn’t it? I just feel like I can’t trust my body right now. But that way madness probably lies. Going to try to concentrate on putting one foot in front of the other right now, and take it one step at a time. There seem to be a lot of people on this forum who have such a positive outlook, and who have responded really well to all of these new treatments that just weren’t around several years ago. Trying to draw some strength from that-and I hope you are able to too! 

Let me know how the CT goes tomorrow.

Xx

My CT results were uploaded to MyChart and of course I check them, stable!!  I meet with my oncologist on the 27th for official results but I ca breathe a little easier now.

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Hi Gini,

Also UK based, 49 in otherwise good health and stage 4 NSCLC. I am sorry it took so long to discover this. I also had a fairly lengthy diagnostic process, but nowhere near as long as yours. Now the wheels are in motion, I hope that things move faster. Depending on the outcome, you can expected either immunotherapy/chemo combo, immunotherapy alone, or a targeted treatment. Possibly also radiotherapy. I am on immunotherapy (Pembro) and will be having radiotherapy in January. I also had shoulder pain and nausea, but it is all gone now. I did acupuncture which worked a treat immediately, but it could also be the therapy which has shrunk my lesions considerably. 

Like you, I found this particular forum to be the most constructive and uplifting. Keep us posted on your progress!

Rikke

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19 minutes ago, RJN said:

Hi Gini,

Also UK based, 49 in otherwise good health and stage 4 NSCLC. I am sorry it took so long to discover this. I also had a fairly lengthy diagnostic process, but nowhere near as long as yours. Now the wheels are in motion, I hope that things move faster. Depending on the outcome, you can expected either immunotherapy/chemo combo, immunotherapy alone, or a targeted treatment. Possibly also radiotherapy. I am on immunotherapy (Pembro) and will be having radiotherapy in January. I also had shoulder pain and nausea, but it is all gone now. I did acupuncture which worked a treat immediately, but it could also be the therapy which has shrunk my lesions considerably. 

Like you, I found this particular forum to be the most constructive and uplifting. Keep us posted on your progress!

Rikke

Thanks Rikke. Sorry to hear you are also traveling this road. I’ve had my PET and EBUS biopsy now… just waiting on the results now. Very glad to hear your shoulder pain and nausea have disappeared… that gives me hope! At the moment I’m largely keeping it under control with various painkillers and domperidone… but fingers crossed it will also disappear more permanently once treatment starts (whatever that looks like). No clue when I’ll find out the treatment plan-with Christmas, I wonder if things might be a bit delayed? The dr who did the biopsy did suggest that they might want to treat my tumours “separately and radically”… which sounds a bit frightening. But I’ll take whatever I can get-and big guns treatment may be the best solution. I’m also keen to give acupuncture a go-not entirely sure where to start though. I’ve never done it before. Do they need to be cancer specialists, or is it just generic acupuncture (sorry… showing my ignorance here!!)

Xx

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Hello again, Gini.

I have learned that “radical” may be a positive term, as they are really pulling out all the stops to get you better (as opposed to just making you comfortable). So that could be good news. But yes, I can imagine there will be some delays bc of the holidays - FYI it took 4-5 weeks post EBUS for me to get my final diagnosis and treatment plan. It was prob the worst time for me. Once you know what is happening, it is less stressful, I think.

Re acupuncture, the main thing is to get someone experienced and registered. Search here: https://acupuncture.org.uk/find-an-acupuncturist/ - it might not work for everyone, but it really helped me. I was on enormous amount of painkillers for months and I was able to drop them after a few days. I’ve been told that some require a few sessions. Anyways, it’s a bit costly, but it can’t hurt (I checked with my clinical nurse and oncologist).

Hope you are able to enjoy the holidays! 

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Welcome, and so sorry.  Sounds like your angry and I love that!  Stay tough, find a medical team you LIKE and trust (with helpful office staff -- they are key!) and don't settle for anyone but the best.

I don't know if your married or have a significant other but know that the best advocate for you,, is YOU! Right now the waiting, and the feelings of helpless ness, loss of control of certain parts of your life,,, they all combine to make a messy outlook.  Talk to your peers, read positive stories, but most of all, don't sit back and wait fo rthe doctor's to hustle,,, MAKE then work with a sense of urgency!!  No-one os more important than YOU!!  Keep us updated, you'll be in my prayers :)

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Gini,

Congrats on your great news!

And, I always read any results that are posted to My Chart-- it helps me prepare for the doctors' visits that come after the tests are read. 

Karen

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Hi all,

So the biopsy came back… as suspected it’s adenocarcinoma of the lung, metastasized to scapula and hilar lymph nodes. Negative for ROS1 and ALK mutations, and immunotherapy markers. F***!!!

Still waiting for EGFR status to come back before they can determine treatment options. They haven’t given me a specific stage though, which is odd… but apparently the lung team will contact me in a week or so, once they’ve had their full multi disciplinary team meeting thing, so I should find out more then.

So many of the success stories I’ve read are of people with the EGFR mutation. Has anyone heard of positive outcomes without it? 

Thanks,

Gini 

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21 hours ago, Karen_L said:

Gini,

Congrats on your great news!

And, I always read any results that are posted to My Chart-- it helps me prepare for the doctors' visits that come after the tests are read. 

Karen

Hi Karen,

I think you’re responding to Shella677… no positive news for me, sadly. I’m also not sure we have “My Chart” in the UK. Sounds good though. I’ve found it really tough not being about to access my results etc…

Thanks,

Gini  

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On 12/28/2021 at 4:29 AM, PamHB1 said:

Welcome, and so sorry.  Sounds like your angry and I love that!  Stay tough, find a medical team you LIKE and trust (with helpful office staff -- they are key!) and don't settle for anyone but the best.

I don't know if your married or have a significant other but know that the best advocate for you,, is YOU! Right now the waiting, and the feelings of helpless ness, loss of control of certain parts of your life,,, they all combine to make a messy outlook.  Talk to your peers, read positive stories, but most of all, don't sit back and wait fo rthe doctor's to hustle,,, MAKE then work with a sense of urgency!!  No-one os more important than YOU!!  Keep us updated, you'll be in my prayers :)

Thanks Pam! I took your advice and did a lot of chasing today. Thankfully that meant I got a few more answers today (not necessarily the ones I was looking for, mind you… but I’m still holding out some hope). Xx

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Hi Gini,

I have my fingers crossed for you getting some good news.
some hospitals in the UK use MyChart. I am at UCLH and can access it. However, they don’t post most results - it’s mainly a one-stop app for appointments, letters etc. The only results I can see are my blood tests, which is marginally helpful to monitor certain treatment side effects. However, someone in a different forum mentioned that she had got access to her imaging after some battles, so I guess it can be done. Personally, I have decided that I am content to get the news from my oncologists, as it could be very easy to misread.

By the way, as I understand it, many oncologists are uncomfortable with the stage 1-4, as it doesn’t necessarily give an accurate assessment. They only gave me my mine when I asked, and it doesn’t appear in any of my letters. Seems the prognosis is potentially different depending on where the cancer has spread and to how many organs etc.

All the best, Rikke

Edited by RJN
Added some stuff on stages
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7 hours ago, EMandM said:

Hi all,

So the biopsy came back… as suspected it’s adenocarcinoma of the lung, metastasized to scapula and hilar lymph nodes. Negative for ROS1 and ALK mutations, and immunotherapy markers. F***!!!

Still waiting for EGFR status to come back before they can determine treatment options. They haven’t given me a specific stage though, which is odd… but apparently the lung team will contact me in a week or so, once they’ve had their full multi disciplinary team meeting thing, so I should find out more then.

So many of the success stories I’ve read are of people with the EGFR mutation. Has anyone heard of positive outcomes without it? 

Thanks,

Gini 

Are they testing you for all the biomarkers? For example my mutation is BRAF

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14 hours ago, Shella677 said:

Are they testing you for all the biomarkers? For example my mutation is BRAF

Hi Shella677,

I’m not actually sure. No one has mentioned BRAF, just ROS1, ALK and EGFR. I will ask them… a “possible larger panel of tests” was mentioned though, so maybe these are just the first set of results and others are available if these all come back negative? I’ll ask!

Thanks,

Gini x

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