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Scar tissue or recurrence?

Shell bug's picture
Shell bug
Posts: 68
Joined: Nov 2011

I had a CT today. My gyn/onc said there is a "shadow" at the vaginal cuff that he thinks is scar tissue from all of the radiation I had (25 external, 3 internal). There was definately no tumor only thickening. I have had no symptoms. On the bright side, no other organ involvement seen and all lymph nodes looked normal. I was diagnosed 2b grade 3 but two nodes glowed on my first PET/CT but not on the second one (after chemo).

At any rate, we are going to do a PET/CT and I always glow somewhere on those. This will be my third one so I'm not looking forward to it. He tried to do a biopsy but couldn't get what he needed because the area was too "flat" and he would need to go much deeper. I was already uncomfortable, but tried to endure it. On physical exam he said everything looked good, but he noticed a very pale white line that looked like radiation healing or damage. I can't remember which term he used. He said he wouldn't even mention it if CT hadn't showed thickening.

He stated that he really does not believe this is a recurrence but you know how cancerhead goes. I was just wondering if anyone has had anything like this happen to you. I will have the PET/CT after Thanksgiving sometime.

Also, does anyone know the rules for FMLA? I used it a lot last year while on chemo and I know one of my coworkers donated over a year of leave to me (she moved). I have had to have more appointments than I thought, so I am burning up leave pretty quickly. Should my cancer appointments be covered by FMLA which would allow me to use dontated leave (contract) instead of my own? Just wondering. I will never have any leave of my own "in the bank" at this rate. I am so thankful that I have any leave, but I don't really trust the lady in HR. She hasn't been very helpful through all of this.

Thanks for any information and I think and pray for you all daily.
Rachelle

laura25's picture
laura25
Posts: 160
Joined: Mar 2011

Hi Rachelle...
I'm sorry Im not familiar with FMLA so I can't help you there.
I do however understand your concern and worry about a recurrence. I had a CAT scan done this past summer and it showed "something" at the vaginal vault, my dr said the same thing, he didn't think it was anything to worry about. He had me do a follow up PET not bc of that, but because of a spot on my lung. The PET scan didn't show anything at the vaginal vault and the spot on my lung did end up to be an infection.
I know for me, I couldn't wait for treatment to be over. Now that it is, I worry about every upcoming scan and what the results will be. My Dr is very up front about what to be concerned about... so if your dr is the same, then you should take comfort that he beleives this isn't a recurrence.

lociee's picture
lociee
Posts: 103
Joined: Apr 2009

I recommend you follow through with the Pet scan - just in case. My doctor (I did have a lot of pain) only ordered a CAT scan - which showed something that he decided was just scar tissue from surgery. A year later a a lot of pain later - it turned out that it was a growing tumor - because it wasn't caught earlier it grew into my colon - then there was super chemo and radiation, which I still feel I have not recovered from.
A PET scan given at the right time can change everything. Nice that your doctor is not taking any chances. Go for the PET.

laura25's picture
laura25
Posts: 160
Joined: Mar 2011

Yes, I agree if I didn't state it my post... go for the Pet scan, it is great that your dr isn't taking any chances

lociee's picture
lociee
Posts: 103
Joined: Apr 2009

I recommend you follow through with the Pet scan - just in case. My doctor (I did have a lot of pain) only ordered a CAT scan - which showed something that he decided was just scar tissue from surgery. A year later a a lot of pain later - it turned out that it was a growing tumor - because it wasn't caught earlier it grew into my colon - then there was super chemo and radiation, which I still feel I have not recovered from.
A PET scan given at the right time can change everything. Nice that your doctor is not taking any chances. Go for the PET.

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

Here's my understanding of FMLA (based on my FMLA from October 2011-June 2012):

FMLA is unpaid, but guarantees you'll have a job when the leave is over
This does not protect you from layoffs or restructures
This does not mean your specific job will still be there for you, just a similar job

FMLA is typically 12 weeks/3 months - my employer extended it to 6 months

The FMLA period is for any 12-consecutive-month period, so if you took leave beginning October 2011, you are only allowed 12 weeks through September 2012

There *is* such a thing as intermittent leave, which is what I did. After being on FMLA 10/17/11-2/26/12 I came back to work. I would leave early for radiation treatments and count the 2 missing hours each day as FMLA. Then when I went back into chemo I'd record each day off as FMLA (I would take off 2 weeks, work for 1 week; for each of 3 treatments).

The time off also dovetailed with disability pay. My short term disability paid 80% of my salary for 6 months and I didn't roll over into LTD (60% of pay) until the last few days of my last round of chemo.

Now that I'm back at work full-time I use sick time/personal time/vacation time for dr appointments just like anyone else.

I'm so fortunate that I work for a cancer fighting nonprofit - I don't think a regular publicly-traded company would have been so benevolent.

Liz in Dallas

Shell bug's picture
Shell bug
Posts: 68
Joined: Nov 2011

Thank you so much for all of your comments. I do have complete trust in my gyn/onc. I go to Seattle Cancer Care Alliance and you don't get hired there if you aren't at the top. We have had a very bumpy road through all of this and he has been nothing but wonderful through it all. He calls me at home and I really feel like he cares about me, he takes my care personally.

So, I am going to trust that this is nothing, and it does make logical sense that it is scar tissue because this is my first scan after all of the radiation. The PET/CT will tell the tale for sure.

Again, thank you so much for your support. My husband says he isn't worried at all and he usually listens to my Dr. through the whole conversation where I go stratight to worst case scenerio and miss bits and pieces.

I hope everyone has a wonderful Thanksgiving. We are having it up at our cabin in the snowy mountains. We've always wanted a cabin so after my diagnosis and treatment we went for it. So, I'm cooking up there for the first time with very few utensils and an oven older than I am. Should be fun and interesting! Taking something for the grill, just in case. There will not be anything open around there.
Thanks again,
Rachelle

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

I sure hope this is nothing too. I have heard that treatment is very effective if recurrence is in vaginal cuff - But let's not even go there.

Enjoy your holiday and keep us posted.

Mary Ann

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Liz explained it well. I recommend that you sign up "intermittent" leave which will give you the flexibility that Liz described to take whenever you need it.

Mary Ann

sunflash's picture
sunflash
Posts: 156
Joined: Aug 2011

Hi Rachelle,

This cancer business sure ain't for sissies! Hope all is ok......but thought I'd give you my experience.

During my last checkup, my doctor felt a slight area on my vaginal cuff that was raised, and she described it as about half a split pea in size. She couldn't tell if it was a break in my skin or an early recurrence. I'm exactly one year post chemo. She didn't want to biopsy since I've had prior radiation, but said she would if it was still there after 30 days. She prescribed estrogen cream to promote healing, which I applied daily for one month, and then went back to her for another check. The area was gone! I asked if the estrogen cream had healed it.......she said, the cream, time, or a combination of both.
It was a pretty intense month while I waited it out, but was so busy at work I forced it out of my head every time it crept in.

Soooooo, just wanted to let you know a possible scenario. Don't know if this would have showed as a shadow on a CT scan or not.

But it's sure possible that this is nothing to be concerned about. Time, and your scan will give you definite answers.

Sending hugs and prayers!

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