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Timing - is this normal?


Darci

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I want to thank you all for your terrific responses to my questions from last week. We are still waiting for the appointment with the surgeon on Aug 16th, where I am hoping to find out more information as to exactly what kind of cancer, what size of tumor, and what kind of treatment they are proposing.

I am curious...this seems to be taking SO LONG, and it seems like if he is a surgical candidate, time would be of the essence before it travels to other parts of the body.

It was around June 1 when my FIL had the first xray that showed some "density" in one spot of his lung. The dr had him come back 3 weeks later for an MRI. Took a week to get those results. Then had him come back for a CT scan. Took a week to get those results. Then had him come in for a Pet Scan...took another week for those results. Then a week to get in with the pulmonary dr. Now we wait two weeks to see the surgeon...not sure when surgery will be. So, it has been 10 weeks since we first heard that something may be wrong.

Is it normal for it to take this long? They have not done a biopsy, and I don't know if they will before surgery???

thanks for your input and support!

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Mine has been going on since late June. Moving a bit faster than yours, though, since I managed to have 3 bronchoscopies since. Bronchoscopy is how they might first take a biopsy, depending on the location of the mass. If difficult to access, I would recommend you look into a ultrasound guided bronchoscopy right away, using a needle for biopsy - few centers do it in the US, but it worked right away. The first two, traditional bronchoscopies were a waste of time for me and taxing my lungs as well.

Maybe you need to be more assertive with the doctors:?)

Z

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there are some things they can't biopsy without surgery, too. my mom had a 'spot' that showed up 2 years ago, which would only have been testable with an all-out surgery to get at it. that may be the case with your FIL. they told my mom they would do the surgery, do the biopsy on the spot, and remove her lung if it came back positive. she opted to wait and see. when a second tumor appeared, they were able to reach it with a needle and the rest is history...

assertive - yes

more info - yes

hang in there!

xoxo

amie

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It sounds to me like his tumor is right behind a rib...they may not be able to biopsy it without surgery.

My in-laws have been going to all of their appointments by themselves so far - I think that they are either totally overwhelmed, scared to ask questions, scared to get answers, or just not fully assimilating the answers that they are given.

I strongly feel that someone needs to start attending the appointments with them, and I pretty much came out and told them that I wanted to attend this next one with them and didn't give them the opportunity to even try to talk me out of it. I offered to go to their last one, but they didn't want anyone to miss work, didn't want to be a bother, etc. But I think that after the last appointment that they realized that they need someone with them. I hope to get lots of information to share with the kids...I am not sure that some of them actually realize how serious this is..and how difficult the recovery and possible follow up treatments are going to be.

It is such a tough time...we have been so very fortunate that he has been so healthy so late into his life, and I think everyone is kind of in shock about this.

Darci

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Don't feel bad, I was in the same boat sort of.

A shadow was spotted in my lung in January, and I had to have a chest CT. That showed a 11m node, but they didn't know if I had had it my whole life or not. I then had a PET scan in February which didn't light up, but I was told that could be because it was so small. Then they gave me different blood tests, a TB test, etc to see if it could be from something else. After ALL that, I was told to come back in 2 months for another CT to see if it grew, since the tests were so inconclusive and my 'spot' also was in a place where they couldn't biopsy.

When I went back in April, it had grown so they then sent me to a Pulmonologist (I waited 3 weeks for an appointment) who I absolutely hated. I found my own, went for a 2nd opinion after another 3 week wait, and he sent me right to the surgeon down the hall. Only problem was, the surgeon was going on a 2 week vacation in a week, so I was going to have to wait till the middle of June, over 3 weeks for surgery. They both said it would be okay to wait, and THEY were affiliated with Cancer Treatment Center of America.

Anyway, I am still here, can you believe it? :shock: I know others have had similiar waits (although I think I'm one of the longer ones) because the doctors don't want to perform the surgery needlessly. When I went into surgery, they actually still didn't know if it was cancer, I was told I had a 50/50 chance. The one good thing, by that time, almost FIVE months after the initial "sighting', I was READY for surgery, I wanted the damn thing OUT, whatever it was...

I wish you and your family the best of luck with your FIL. I will be watching the boards to see what the surgeon tells him on the 16th! Whatever it is, please remember that there are plenty here who have been through whatever it may be...

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hi Darci.

Depends on the facilities, protocols that have been set up.

For me, fortunately, I was admitted to a hospital on Thursday evening and by Saturday morning, I was on the surgical table.

This hospital was set up to expedite the diagnosis for lung cancer. What a godsend for me.

I had Chest Xray, rule out heart problems, bloodwork, CT scans, MRI of brain, needle core biopsy and path, and finally surgery for staging. The next week I had a bone scan and a PET scan. I had a treatment plan set up with oncology and a radiation treatment plan set up. It took about 3or4 weeks for treatment to begin after my first initial stop at the hospital ER.

Cindi o'h

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The mass on my lung was first noticed in April and I didn't get surgery until mid July. My doctor was sure it was cancer, my pulmonologist was sure it was not cancer, my surgeon was "on the fence", I was a confused mess.

I was finally given the option of surgery or waiting another three months to see if it grew. They said it would have to come out some time soon anyway because it was the only way they could tell if it was cancer.

Since they could not biopsy without surgery I, like Debi, chose to get it out as soon as they could get me scheduled as I was scared and wanted that thing, whatever it was, out of my body.

So, mine was a 3 month wait. I don't think the wait is all that uncommon unless it is rapidly growing.

Good luck,

Kathy

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Thanks again for all the responses.

So...maybe this means that the tumor has not grown much from scan to scan...that would be good news, because it would mean that it is not a fast growing tumor.

If it seemed to be growing fast, then one would think that they would be pushing to get the surgery done before it could spread from the lung to another part of the body.

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Hi Darci

Yes, the waiting is hard, very hard. At times my father has waited due to doctors being out of town, specific doctors that were suggested and had long waits... At other times, he has had long waits due to many evaluations and consultaions which do make sense to make sure you have the total picture to make the best decisions. It is hard but always a good idea to have an extra set of ears and vocal cords with you at appts.

Good luck and welcome to our site.

Gail p-m

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yes, Darci. our surgeon noted frequently that my mom 's tumor changed ever so slightly (never on the CT, subtly on the PET) over more than a year which is GREAT news. once the 2nd one appeared, obviously they had to go it but I can tell you my mom has no second thoughts re: waiting on the 1st one.

xoxo

amie

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Hi Darci,

My husband was diagnoised in Oct. had all the same test as your FIL and had surgery in December. So it seems like the timeline is going on target.

I am glad you are going to his next appointment. If he does need surgery, ask the doctor about the VATS procedure.

Maryanne

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