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Thursday up then Friday a crash
Lillee
104 Posts

I have been going through all of my year 1 tests and everything has been great. My CT scans on Thursday show nothing abnormal. Hurray. I celebrated with friends in my bubble.

Then on Friday I got an email saying there was a new test result on MyChart so I went to look at it.

The Thursday report only included the lower abdomen (colon cancer). All the cancer there is gone. However, this second Friday report included my lungs.

And there was the crash. Good thing I have good friends who helped me forget about it for a couple of hours. But I woke up Saturday morning crying. What if…? What do I need to do before I die? I had to get up after a good cry and get motivated.

Last year they found an 8 cm spot in my upper right lung. They told me at the time that most people have them and not to worry. They would check again in 6 months. So, 14 months later I finally get a second CT scan. The spot is no longer 8 cm. It is now 19 cm. it has grown 11 cm in 14 months! And I am being referred to the Ottawa Cancer Clinic for assessment and treatment.

I am very upset that I got this report on a Friday night at 5:32 pm. Everything is closed. No one to call. No doctor to call me about the results. In fact, my oncologist is on vacation.

First thing on Monday I called. Someone would get back to me…. …… ….. …..

First thing Tuesday I called and spoke with someone. Told them the story again. Someone would get back to me …. … Didn't have to wait. They called a couple of hours later.

The report was flagged as soon as it came it and was referred for follow-up. That will happen within 2 weeks. Meanwhile there is a good chance I have cancer… again.

The good news. It is still relatively small and is in the upper right lung. This makes it much easier to get out. It appears to be a solid mass rather than anything else. That too makes it easier to remove.

Chemo was so bad last year they had to stop and start; stitch from pills to infusions and still stop and start and finally give up. I have no idea how I will handle something else.

27 Replies
Brighty
7040 Posts

@Lillee thank you for trusting us to confide the news of your latest update. I'm praying for you that it's not the worst case scenario, but if it is, we will be here by your side to help you through it. Keep us posted. Thinking of you!!!!!

Whitelilies
1200 Posts

@Lillee Hello….I am so sorry, to hear of this update , for lack of a better word. Up, down, round, and round, we patients go……it is dizzying….

I am glad you reached out to them, for help, for an explanation, for support…..they/staff are busy too…..covid put another layer on top of current needs of patients……just so difficult…..I do hope, that you will get what is needed, and very soon…..and it is wonderful, that you have a close knit group of friends! For a big, group hug!

We are all, also, here, for you.

Hugs to Lillee

From Whitelilies

Boby1511
498 Posts

@Lillee

Hi there,

Lungs, I feel for you. Hopefully if cancer they have caught it small enough to cure.

Sending best thoughts out to you.

Lillee
104 Posts

I have never smoked. None of my friends smoke. In fact I am allergic to it. My father was a very heavy smoker when I was a child. But I have always lived in large cities. Who really knows. I never expected colon cancer either and the only reason they found either of them was due to testing. I had no symptoms of either one of them

Brighty
7040 Posts

That is the scary part of cancer @Lillee . It just strikes, random. Doesn't seem to be a rhyme or reason to it sometimes. Keep us posted on what you learn and we will be here.

Kuching
283 Posts

@Lillee Well that could seriously ruin your weekend. I’m so sorry. Here are a couple of thoughts, from one who has had stage 4 lung cancer for 2 years and is still feeling just fine.

I assume you mean 19 mm, not 19 cm. That would take up your whole lung! Mine was 30 mm, and I was told that the bigger it is, the more likely it is to be cancer. So before anybody cuts anything out, I assume they’re going to do a biopsy to see if it really is cancer? And, if it is, to see if it’s lung cancer, or metastasized colon cancer.

Another reason to have a biopsy is to check for biomarkers - there are a growing number of genetically specific treatments nowadays, which would just mean taking a pill a day (targeted therapy, which is what I’m on) or getting a shot every month or so (immunotherapy), depending on the particular mutation. A lot easier than chemo!

You are back in that frantic tests-and-consultations phase that we all hate. But you’ve been through it before, you can handle it. I’ll be thinking of you, worrying about you, and hoping that it turns out not to be cancer. Please let us know how it’s going and what’s happening.

supersu
263 Posts

@Lillee

what a shocker! sorry you had to find out that way; and with no support, what a shame.

with technology comes things that ‘they’ don't think about. I wonder if doctors really understand just how much anxiety us cancer patients have over these reports? I am going to ask my doctor for an after hours number should I ever need any of my reports clarified. I LOVE getting the direct results, but if the medical profession has decided this is the way they want information shared, they should be willing to support us.

good luck with your story going forward. let us know as things evolve. we are here to support.

cheers/hugs
su

#newdiagnosis #onlinereports

Lillee
104 Posts

yes from 8 mm to 19 mm. My daughter recommended asked about biomarkers. I never heard of them before. Thank you. I love options that might become possibilities.

Lillee
104 Posts

the spot is 8 mm to 19 mm NOT cm. Still small enough for a resection

Lillee
104 Posts

I spoke with my oncologist this morning. There will be no biopsy. I go for the PET scan, pulmonary and blood tests this Thursday and then they will schedule me for surgery to remove it. Then they will decide what to do with me based on whether it is cancer at all, it came from the colon cancer or is something new. So as soon as they can schedule me after the test I will be in there to remove it. And the previous blood tests showed no tumor markers and no lymph node enlargements

Brighty
7040 Posts
Thank you updating us Lillee‍ . We will be waiting to hear from you on Thursday. Best of luck. Your blood tests sound positive.......I'll be thinking of you this week.
Lillee
104 Posts

Thank you

Lillee
104 Posts

A biopsy is scheduled for Fri. July 16.They need to know what kind of cancer or if it is even cancer so they can decide what kind of surgery to do. If this is lung cancer they have to remove the surrounding tissue. If it is from the colon cancer they can simply remove it. Same if it is benign - just remove it.

Brighty
7040 Posts
Keep us posted. Lillee‍ .I'll be thinking of you on. The 16th.
Lillee
104 Posts
Going this morning for a PET, a pulmonary test and blood tests.
Brighty
7040 Posts
Good luck today Lillee‍ !!!!!
Brighty
7040 Posts
Lillee‍ just checking in... any updates? Let us know when you are able.
Lillee
104 Posts
The PET showed malignancy. I am having a biopsy tomorrow. They need to determine if it is from the colon cancer last year, which would mean just take it out, or if it is a lung cancer and more tissue needs to come out with it.

No other tumors were found anywhere in my body. It has increased by another cm in the month since they found it. Still considered a slow growth cancer but I still want it out asap.
Brighty
7040 Posts
Thanks for updating Lillee‍ ..good luck tomorrow with the biopsy. Please keep us posted when you get more info. Of course. .you want it out asap!!!!

Hey @Lillee

I didn't pay too much attention to these posts because I think of you as a brave colon cancer patient. This is definitely a twist in that path.

If I read the posts correctly today is surgery day. Best of luck. And take care as you rehabilitate. I wanted to take a moment to reiterate what @Kuching said. #LungCancer is much more treatable today than it was even three years ago when I was diagnosed.

If it does turn out to be lung cancer make sure you ask about biomarker testing. I suspect the reason that they skipped the biopsy step is because they knew it was coming out anyway. But make sure they don't skip the testing. There should be about eight biomarkers that they should be checking for but this isn't standardized across Canada yet. Each one has its own treatment.

Again good luck with the surgery and even though it was followed by bad news congratulations on sailing through the colon cancer treatment.

Angus

Lillee
104 Posts
They decided on the biopsy. The surgery will be quite different based on what they find. Had it done this morning. Now more waiting.

Thank you
JustJan
740 Posts

@Lillee I'm glad that is behind you. I know the waiting is hard and can be anxiety provoking. We are here to support you.

Cynthia Mac
3229 Posts
Hello, Lillee‍ - I’m adding my voice to the team who’s holding out good thoughts for you.
robegree71
65 Posts

Brightly is this you talking about lung cancer ?

Brighty
7040 Posts
No robegree71‍ ..I was responding to Lillee‍ ' s post. Thank you for inquiring. And thanks for the support you have been providing to our members.
robegree71
65 Posts

With disease we all need as much support as we can get. The medical system in Ont. really sucks right now and especially if you are waiting on a cancer diagnosis or update.

I hope I can help one person in one way. I was worried that you were now dealing with it.

robegree71
65 Posts

Good to hear you aren’t !

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