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FINALLY, an update after a VERY long wait! Remember me?


famograham

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What a bloody rollercoaster!

After a chest x-ray in March, then a CT, and two (negative) bronchoscopies including multiple biopsies...my Mom FINALLY had her PET scan last week on Wednesday.

Yesterday, we went to get the results.

We finally know that it IS cancer. The main tumor in her left hilum lit up (SUV max 8.8...whatever that means.)

But it appears from the PET that that is the ONLY place that appears cancerous (good news?). Nothing in lymph nodes, none of the other "stuff" from the CT scan lit up either.

I asked the doctor if that classifies her as a stage 1...he said no, because the tumor is very close to her pulmonary artery. He would guess her to be a 2b, or a 3a?

He said he thinks she may be a candidate for radiation only. He said normally, they would just take that whole left lung out, but because of her emphysema, she'd only be left with 25% lung function, so...not an option for her.

She will be referred to an Onc in Victoria, even though we still don't have a tissue biopsy to get the type. I don't know how long that will take.

SO, what I feel, is that this is the best news we could get...short of it not being cancer at all....am I insane for thinking this way??

Please share ANY and all thoughts you might have about what I've said...I barely know the meanings of what I've written!

Thanks so much,

xoxo

Linda (who's going to attempt to update profile!)

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That is good news.. good luck with her treatment.

I just don't understand why they had to put her through 2 bronchoscopies and multiple biospy's before doing a Pet scan. The Pet would have showed it right away and she may not have needed all those test. Usually if the Pet comes out negative they do those test to see if the tumor is maligment. Which I can't figure out why they came out negative.

This is just a little strange the way they did it.

Anyway they seem to have a plan for her and Iam sure she will be fine. She is lucky it did not spread to the lymph nodes.

Maryanne

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That is good news. I would get a second opinion though on the surgery. Many people here have gotten a lobe removed or a wedge piece of the lung instead of the whole lung. I am not s ure if they won't operate at all b/c of emphyasema, but a second opinion can't hurt if your insurance allows it.

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I'm glad you finally have some answers. I do agree with Andrea about a second opinion. The best chance at a cure is surgery- but there are several long term survivors who were not a candidate for surgery either- whatever the next treatment plan, I hope it's a total success for your mom. Keep posting and keep us updated!!!

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Hi Linda,

Sorry to hear about your mom's cancer. Its too bad that she had to go through so much in order to get the diagnosis.

Now that you know what your dealing with, at least treatment can be started.

I am a stage IIIA-IV four plus year survivor. I have my fingers crossed that your mom with be able to say she is a long term survivor too.

Wendy

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Hi Linda. I haven't forgotten you and have been waiting patiently for you to post an update. That's not great news. Very confusing re staging though. PM me please...I can give you some advice re docs...and treatments. Scares me re suggestion of radiation only but you haven't even talked to a med onc...anyone else is just guessing so dismiss that. I hope you can get into the clinic soon...make sure a referral has been made..it can take quite some time to get in and the waiting is awful. In the meantime hang in there and I am here for you for any questions you might have.

Sandra

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I Have yet to have my RLL lung mass BX, due to mets they say. That tumor is quiet and behaving now for the last year. I have those hilar guys and my numbers are dropping. Second opinion pretty much saved my life.

Wishing the best for your Mom,

Mary

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Linda:

It's great news that PET is only lighting up in one spot (indicating no metastasis), and you're right that it would normally be 1A only. The doc's also right that the pre-existing emphysema is a problem, but I wouldn't go to radiation only without looking carefully into surgery as that's always the best bet.

What kind of doc is the one who wants to nix surgery? I'd want an opinon from a thoracic surgeon if I were you.

In the meantime, good luck!

Affectionately,

Carole

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Eeek! I haven't checked in for a while! I didn't think there would be any more replies, I'm so sorry for making you wait!

Sandra: I agree it's very confusing re: staging, but he did say it was only a guess.

I hope we can get to the clinic soon too! Haven't heard anything so far, Mom called the other day and asked how long it would be...they weren't particularly helpful (receptionist)...basically said "I don't know"

I would LOVE some recommendations on Onc's in Victoria...but don't we have to just take the one we're given/referred to? Please PM me anything you have to share ;)

Carole: The doctor who has told us everything we've learned so far is, I believe, an Internist. (John Ronald, in Nanaimo BC) That's fairly general, isn't it? I am SO open to other options, and I think my Momma would be open also...IF there was a good chance. She's really concerned about quality of life, and very scared of being "sick" because she still feels so good.

I'm very much looking forward to hearing the opinion of other doctors, and moving on with this. Mom is anxious too, to "get the show on the road!"

On another note, together, Mom and I told my kids today. We used kid friendly wording, and kept things very positive. They did fantastically well. They had some questions, and we answered them honestly. I'm sure more will crop up as all of this unfolds.

It was my own fear of telling them that made me wait so long. Mom was ready to tell them as soon as we got the PET results. My kids spend at LEAST one night a week with my Mom, so they are extremely close.

I was so proud of them, and Mom, and myself, and it was much easier than I imagined in my head!

All of this is just so overwhelming...but we are thinking very positively..maybe too positively?

Linda

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