Need to hear from you ladies re path report

Donna Faye

Drat it all...just was on my way to feeling 100% - had my 6 month check and just got the news - cancer was founf on the vaginal wall.

Next step is a full body scan w/contrast to see what else might be lurking. I will be 78 in April.  I am not sure I want to fight the cancer

with treatments that are going to make me sick and depressed.  Since I was supposedly a 1a and it is back in 6 mos. after chemo and

radiation, I am thinking I have a cancer that doesn't want to let go. 

SO - any advice as to treatments you think might be easier would be most helpful as I move forward. Will know more after the scan, and perhaps am

asking too soon but need to think this through and your lessons and advice have always been so right.

 

 

 

calliegirl

hi donna faye...

so sorry to hear the cancer has returned...all in 6 months...

you mentioned your were dx Stage 1A? Did they give you chemo / radiation at Stage 1a?

I was dx with Stage 1A, and not given any treatments...and I had lymphovascular invasion...

The reaason why I ask because I'm having all sorts of issues again...especially extreme tiredness...

 

Wtih regards , I would first do the scan see what the results are ...then make a decision on best treatment plan...

Keep strong.

saltycandy13

of course you want to ........

fight this cancer.  Never give up. Although discouraging at times, we are the warriors here.  Find out your treatment options.  I will say a prayer for you and keep you in my prayers.  I have quite a list here but there is none a list too long.

God Bless you,  please let us know your options.  We are here for all the support you need online.

Karen

Northwoodsgirl

Donna Faye

I am so sorry to hear the cancer has returned. My biggest fear too. I don’ t understand why you had chemo at 1a. Maybe radiation would be an option. Don’t know if you need a second opinion but certainly would try it. Please give it a go at more chemo if appropriate and tell them you need better control of side effects! Praying for you...(Hug). 

Lori

Donna Faye

Treatment

Yes, I was a 1A with no involvement in January surgery. Told it would be wise to do 3 carbo/toxol rounds and then 5 barcky which I completed in July. So 6 months later, found lesion on vaginal wall where very unusual - not on cuff.

I feel great and have been exercising and getting in really good shape - so not what I was expecting.  Thanks

Callie, Salty and  Lori.  I will be patient as we all have to learn in this war - will weigh all the options. 

saltycandy13

that's scary!

My doctor told me after I had a diagnosis of Grade 1a with no invovlement anywhere, that no further treatment was needed.  And boy did they dissect everything they took out of me and I do mean everything.

However, and there is always a "but" he informed me I could have a recurrence and it usually takes about 3 years.  This sucks.

JinVa

Donna, I am so sorry. Please

Donna, I am so sorry. Please know that we are pulling for you. We respect your feelings and decisions. I echo others who urge a second opinion. Since the cancer is on the vaginal wall could this be something else as opposed to a recurrence of the uterine cancer? did they tell you anything about the specifix type of cancer that you had? Please hang in there, ask lots of questions until you are satisfied with the answers. Sending you warm thoughts of support.

dgrdalton

So sorry you are going through this

Donna Faye, I found you soon after I found this site. We were both UPSC stage 1A. i am 66 and did 3 taxol/carbs and 6 brachytherapy. I just finished 3 weeks ago.  My CT and follow up are coming in ten days and I’m having scanxiety. I had a couple of nodes on the chest; one shrunk and the other was stable after chemo. Dr. said it was clinically insignificant at the time, but I will feel better if it’s gone and she says NED.

Praying for you and sending hugs! As one Donna to another, We’ve got this!

Donna

evolo58

How did they find the cancer

How did they find the cancer on the vaginal wall? Ultrasound? Biopsy?

Do remember that CT scans find areas of concern for the doctor to check; often via a second test. It does not necessarily 100% mean there is cancer in those areas. Apparently, all sorts of nodes and weirdness are in our bodies that aren't cancer, but do scare the crap out of us! 

I would also be curious as to the treatment proposed before making any final decisions. Second opinion is a good option as well if you are not happy with the diagnosis or options presented.

saltycandy13

I agree with Evolo

So many times I have been "scared"  And these tests are not always accurate.  I could give several examples.

My first transvaginal ultrasound showed a white blob in my uterus.  This was about 5 years ago.  They showed me the actual pictures and told me I had a tumor which needed biopsy.  And when it came time, I had my first D/C and asked the Dr. what was that "white blob?"  She said "What white blob?" there was nothing there.

Aside from some polyps at the time that were non malignant, there was no tumor.  

My husband had a scrotum ultrasound and they told him he had testicular cancer!  He came home so upset.  We went for another opinion.  Turned out to be a cyst.  I really can't trust these tests!

Karen

NoTimeForCancer

Damn it.  Donna Faye, I am

Damn it.  Donna Faye, I am sure they will look to see if it is your original cancer as a recurrence or a new type of cancer.  When is your scan scheduled?  Let us know how it goes and see what the "plan" is.  Prayers dear one.

Kaleena

Scar Tissue?

Donna Faye:

I recently had a biopsy testing positive for adenocarcinoma around my vaginal cuff/rectum.   However, just so you know, I have had lesions in this area for many years.   It has showed up on PET scans with a positive SUV (albiet very low).   I had a CT biopsy done in 2014 - which was negative.   It started to grow a little but given the one test they just watched it.   As the years went by, I started to get pain.  I complained and they kept telling me it was just scar tissue.    In my CT scan in 2017, it indicated that I had another small tissue mass.  At this time my pain was now daily but my gyn/onc just shrugged it off.   He didn't even give me an exam.  Just read me my CT report.   I left that gyne/onc and went elsewhere.   I met another oncologist who reviewed all of my records.   Given the fact of where this was located, it was very difficult to get to.  He decided for me to have an MRI in 6 months.   My pain got worse so I had them move up my MRI 3 months.   The MRI indicated some progresssion and irregularity around the vaginal cuff.   Still not much that they could do.   He then asked for me to have a EUS rectal biopsy.    That biopsy came back negative (although the pathology report indicated that the specimen was "Less than Optimal".   I was then referred to a gyne/oncologist.   I met with her and she was going to just keep an eye on me.  However, she had my biopsy reexamined by her pathologist.   This was came back with questionable readings on some of the slides which could be just endometriosis or it could be disease.   In the meantime, my oncologist wanted me to have a Gatrovue Enema.   This showed significant narrowing near my rectum which could be caused by the tumor.   My gyne/onc then called and asked for me to have a CT Biopsy.   I just had this done.  They where able to go in at a different angle from the one I had in 2014.     This one came back positive for adenocarcinoma.   

 

It seems to be slow growing.   I have another MRI on Monday and I see the oncologist on March 1st.   I am not rushing into anything.  I don't think I want chemo as it has been there for many years.   I think I will wait to have surgery as long as I can because of how everything is glued together down there.   

My case is different as I have had many surgeries.  I just want you to know that it could just be scar tissue.   I have 3 or 4 masses there - which comes back as connective tissue.

Hang in there!  My best to you.

Kathy

Donna Faye

How found

The doctor did a pelvic exam and saw 2 small lesions. She got one for biopsy but other was too flat. They were not near the cuff and she commented they were in an unusual place.

The biopsy came back cancer, but as we know, it could be limited to the vaginal area. Hope to get a scan app't. Monday. Then going on a 10 day trip and when I return, will look at opitions 

I am just more frustrated than anything,as have been cooped up for 19 months. Longest I have ever gone w/o a trip or riding horses. I admit that I don't do puny very well and now am 

feeling great and looking strong. Life happens when we are making other plans.  Thanks all. You input has meant so much to me since Jan. 2017!!!!!

MAbound

Love your attitude

You are one strong lady and I really admire how you've been battling the beast. I'm so sorry that you are facing this again. Please don't give up yet, you seem to have yourself in such a good place to still defeat this monster. This is a huge set back, yes, but life is worth fighting for and you sure seem to have that kind of grit! 

derMaus

Don't Despair

Donna Faye, don't despair. As we've all sadly found out, chemo isn't an exact science; sometimes it works on SOME of the cells during PART of their life cycle. Microscopic stuff can get left behind from the original surgery, ignore the treatment regimen, and keep quietly growing until it's big enough to detect.  That happened to me: I actually grew new tumors during chemo. To this day they can't figure out if it's a recurrence, or the original cancer that was chemo resistant and kept right on growing. I've chosen to characterize this as the former: not a recurrence but a continuation of the original cancer, which I find more comforting. The good news is that it's in the same neighborhood as the original cancer, and local recurrences have a MUCH better prognosis. Hang in there! We're all with you. B

Donna Faye

Scan date is today at 3pm

Having scan done at 3 today; meeting with onc-gyn tomorrow at 1pm for results. At least we are not dragging our feet. Hopefully still just in vaginal wall but will see what we see.Know I have all of you as the wind beneath my wings. Will let you know tomorrow what is found or not. 

xoxo , me

EZLiving66

Donna Faye said:

Scan date is today at 3pm

Having scan done at 3 today; meeting with onc-gyn tomorrow at 1pm for results. At least we are not dragging our feet. Hopefully still just in vaginal wall but will see what we see.Know I have all of you as the wind beneath my wings. Will let you know tomorrow what is found or not. 

xoxo , me

Hi "me!"

Hi "me!"

I'm keeping my fingers and toes crossed that this is just a local recurrence and they can just zap it - that's what my doctor told me he's going to use radiation for.  Please keep us updated!!

Love,

Eldri

Armywife

Donna Faye said:

How found

The doctor did a pelvic exam and saw 2 small lesions. She got one for biopsy but other was too flat. They were not near the cuff and she commented they were in an unusual place.

The biopsy came back cancer, but as we know, it could be limited to the vaginal area. Hope to get a scan app't. Monday. Then going on a 10 day trip and when I return, will look at opitions 

I am just more frustrated than anything,as have been cooped up for 19 months. Longest I have ever gone w/o a trip or riding horses. I admit that I don't do puny very well and now am 

feeling great and looking strong. Life happens when we are making other plans.  Thanks all. You input has meant so much to me since Jan. 2017!!!!!

Looking forward to hearing what they have to say

Your spunk inspires me!

NoTimeForCancer

Donna Faye said:

Scan date is today at 3pm

Having scan done at 3 today; meeting with onc-gyn tomorrow at 1pm for results. At least we are not dragging our feet. Hopefully still just in vaginal wall but will see what we see.Know I have all of you as the wind beneath my wings. Will let you know tomorrow what is found or not. 

xoxo , me

Agree - it is nice to see

Agree - it is nice to see they are not dragging their feet.  We will be here waiting for you and wishing you the best.

Northwoodsgirl

Keeping you close in thoughts

So hard to wait but you know we are keeping you close to our hearts and praying for good news...((Hug))

Lori

Donna Faye

I love this bunch of ladies!!!!

OK. Scan done. My daughter is going with me tomorrow as my chemo brain does not hold all that is said. Then I will leave for some time with 4 of my childhood friends. I will also visit my sister in law as she will be a good listener. My brother died at 72 from cancer and he fought for several years. I will return with a plan. I have reread so many of the posts here to get information on different treatments and have made lots of notes of websites to visit. Again, thank you so much all of you for answering with info or with your good wishes, hugs and prayers. It makes me braver to go forth and conqueer.

Update tomorrow before I leave!  Hugs back to all of you!