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Need to hear from you ladies re path report

Donna Faye's picture
Donna Faye
Posts: 241
Joined: Jan 2017

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
Posts: 48
Joined: Jan 2018

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
Posts: 167
Joined: Dec 2017

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
Posts: 527
Joined: Oct 2009

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's picture
Donna Faye
Posts: 241
Joined: Jan 2017

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
Posts: 167
Joined: Dec 2017

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's picture
JinVa
Posts: 29
Joined: Dec 2017

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's picture
dgrdalton
Posts: 65
Joined: Jun 2017

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
Posts: 293
Joined: Dec 2017

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
Posts: 167
Joined: Dec 2017

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's picture
NoTimeForCancer
Posts: 2584
Joined: Mar 2013

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's picture
Kaleena
Posts: 1961
Joined: Nov 2009

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

SF73
Posts: 262
Joined: Oct 2017

I cannot believe how long your doctors thought what they were dealing with was a scar tissue. Why don't they take our pain seriously? Does granulation tissue/scar tissue supposed to hurt anyways? I am so sorry that this came back for adenocarcinoma. I think you are very wise for not rushing for any decisions. 

Kaleena's picture
Kaleena
Posts: 1961
Joined: Nov 2009

I just had my MRI on MOnday (Feb 19th).  No results yet.   I've had scar tissue for a long time.  I only brought it up when I started to feel pain.  (That's how I found my 1st recurrence).   I ususally don't take any meds and I started taking motrin a couple of times a week until I was and still am taking it daily.   

Thanks for your reply.  I'll let you know what the oncologist says on March 1st.

Kathy

Armywife's picture
Armywife
Posts: 294
Joined: Feb 2018

Thinking of you, Kaleena - any results yet?  Also, you mentioned having pain - can you describe what that pain felt like?

Kaleena's picture
Kaleena
Posts: 1961
Joined: Nov 2009

I do have a high tolerance to pain.  However, this pain feels almost like menstrual cramps or a very deep achiness.   If I let it go too long then I do get pain.   The pain is mainly in my rectum/tail bone area.  Also, it affect my bladder.  It makes my bladder ache.   Sometimes I don't even realize I am in pain until it is gone.   I'm so used to it at times.   Like a tooth ache.   You have it and then you don't.   I do get some queasiness too when I am feeling "achy".    It wears you down.   But I have found that I take motrin at the start of any feeling it keeps it in check.   I was concerned about taking motrin daily but was okd by the doctors.   I have been referred to the pain clinic, but haven't made it there yet.

this pain is different from other aches and pains as with those ones, if I have an alcholic drink that pain would normally go away.  However, with this stupid dull achiness, I recently had an alcholic drink (the only thing that was achy was the place where I believe the mass is).   This is just my thoughts on it.

 

CheeseQueen57's picture
CheeseQueen57
Posts: 803
Joined: Feb 2016

I will be praying for you. Trying to survive the pain of this stent I think of you often and how you endured that. Frankly I find this more painful than any of my cancer treatment. 

ConnieSW's picture
ConnieSW
Posts: 1440
Joined: Jun 2012

Kathy, I always feel overwhelmed reading everything that has happened to you. Your toughness awes me. I'll be waiting to hear from you March 1. 

Kaleena's picture
Kaleena
Posts: 1961
Joined: Nov 2009

We just keep on chugging!  My gyne/onc called and asked if I had spoke with the oncologist yet.  I told her my appointment is March 1st.   She did say that she saw my MRI and that there was a slight progression.  I think she said something like 13 mm to 23 mm???   I haven't seen the report yet and I was talking to her at work so I didn't get to talk freely.   She did say that the oncologist believes he can get this out with surgery, but there are so many questions I need to ask so I will leave it at that for now until I see him on Thursday.

In the meantime, I will be watching my youngest son in a musical today.  He is playing Curly in the musical Oklahoma!   Also, decorating my house for Spring.   Although they are calling for almost 4 inches of rain by Sunday night!  At least the temperatures are warmer!

Hugs!

Kathy

Donna Faye's picture
Donna Faye
Posts: 241
Joined: Jan 2017

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!!!!!

Armywife's picture
Armywife
Posts: 294
Joined: Feb 2018

Your spunk inspires me!

MAbound
Posts: 859
Joined: Jun 2016

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's picture
derMaus
Posts: 559
Joined: Nov 2016

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's picture
Donna Faye
Posts: 241
Joined: Jan 2017

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's picture
EZLiving66
Posts: 1344
Joined: Oct 2015

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

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2584
Joined: Mar 2013

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
Posts: 527
Joined: Oct 2009

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

Lori

Donna Faye's picture
Donna Faye
Posts: 241
Joined: Jan 2017

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!

SF73
Posts: 262
Joined: Oct 2017

Good luck with your meeting tomorrow. I hope you will receive some encouraging news.

Donna Faye's picture
Donna Faye
Posts: 241
Joined: Jan 2017

Well, it is good news and bad news. The good news is that is is contained in the vaginal wall and no MET anywhere. I am meeting with the radiologist tomorrow to talk radiaiton.  So, tell me about internal and external radiation and side effects. Oncologist is going to do some gene testing but would like for me to consider low dose of Cisplatin chemo as well. She gave me some information and I will do some thinking while away on my trip. So any of you taking that and what were the side effects?  My daughter went with me and she will also go tomorrow so we can discuss the options w/o me forgetting half of what was said. Will keep you all in the loop as I value your experiences and wisdom.  

SF73
Posts: 262
Joined: Oct 2017

So glad to hear that it is contained regionally. Wishing you the best of luck with your treatment. 

derMaus's picture
derMaus
Posts: 559
Joined: Nov 2016

Great news that it's contained. A local recurrence has a much better prognosis so you're in the best possible position, of course given that you didn't want a recurrence at all. I realize that sounds like saying you have a good seat on the Titanic, but remember: about a third of the people got off, so it wasn't a 100% disaster. But I digress... 

I had low-dose cisplatin with my external radiation. I questioned the efficacy since my tumors resisted the original carboplatin/taxol chemo, but the consulting onc said the point was to weaken the tumors to facilitate the radiation, not kill them outright. I had 4 rounds spread over 5 weeks with no apparent side effects. I was really afraid of the radiation, for some reason, but I was more afraid of dying so I proceeded. Because my recurrence was so high up (retroperitoneal lymph nodes, slightly above waist level), the radiation field went from my breastbone to my pubic bone. It was not fun but I got through it and have no lasting effects, at least six months out from the end of treatment. There's lots of great advice on this board and it helped me get through it all, I know you will too. Best wishes and keep us posted.

 

Donna Faye's picture
Donna Faye
Posts: 241
Joined: Jan 2017

Thank you for this message. One of the reasons I did the chemo and bracky was after hearing from others who did it, I decided to go for it.  I just do not want to be sick and not able to be independent. Heart attack was the disease of my relatives and parents - but cancer seems to be this generation's.  I have great faith in my radiologist and I believe he will steer me right. Will certainly continue to post. Hugs...

pinky104
Posts: 574
Joined: Feb 2013

If heart attacks have run in your family, it might be a good idea to have a ferritin level test done or get some genetic testing done.  Hemochromatosis can cause a family history of heart attacks.  It makes the body unable to eliminate ferritin from the body.  I was the first to be diagnosed with it in my family, as not much was known about it until about 20 years ago.  I don't have the most common form, where frequent blood draws are needed to remove the ferritin from the body.  I have a form that sometimes contributes to iron overload and sometimes doesn't.  I only need to have blood removed once in a while.  My ferritin level was 962 after my first cancer diagnosis, where the maximum I should have had was 150.  It's said to be the most common illness that most people know nothing about.  It affects something like 2 or 2-1/2 percent of the population.  When you're younger, your period helps get some of the ferritin out of the body, but after menopause, it just accumulates.  It can cause a lot of different problems from joint aches to heart attacks.  I had to have an MRI months after my cancer surgery to make sure it hadn't accumulated to dangerous levels in my internal organs, but it hadn't.  My father had a heart attack at 42, lived to 84 and died of renal failure due to congestive heart failure.  My seemingly healthy little brother died at 57.  Neither had a diagnosis of hemochromatosis, but since it's hereditary, I think that's what caused their demise.  I have since found out from some relatives out west on ancestry.com that it runs in the male members on my father's side of the family.  I've also heard that high iron levels can feed cancers.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2584
Joined: Mar 2013

derMaus - I never wrapped my head around radiation when I had it, but I did it anyways.  

Donna Faye, first let me say, if you don't want to be sick and not be able to be independent - you won't be.  You got too much SPUNK.  I am glad to hear your daughter will be there to be an 'extra set of ears'.  Cowgirl up!

Donna Faye's picture
Donna Faye
Posts: 241
Joined: Jan 2017

pelvic radiation and Cisplatin. Update on results today but wanted to pull in any who had done this...thanks all!

Donna Faye's picture
Donna Faye
Posts: 241
Joined: Jan 2017

The radiologist told me today that in his 10 years he has only seen my point of recurrance 3 times! I went back and read all of your posts and am impressed with how you have advocated for yourself. I asked my oncologist about metforim and she said it would not help. I am thinking I need to ask another doctor. How did you find out about getting on it? Many thanks! You give me hope!

derMaus's picture
derMaus
Posts: 559
Joined: Nov 2016

I'm happy if you found any use in my posts, but I'm not sure how successfully I've advocated for myself: more likely I've succeded in annyoying my doctor - not that I give a flying s**t. I found out about Metformin here thanks to TakingControl58, and my onc readily prescribed when I asked. It's my understanding that they're in 3rd stage clinical trials to confirm it's efficacy for uterine cancer overall, but the strong linkage to certain mutations has already been established. [Note that my Foundation 1 report had not come back when I asked for, and was given, it.]  There's a lot of literature out there; the link below goes to one example. Perhaps you can print out a few things and take them in to your doc, asking for a justification for not prescribing. If he won't reconsider ask for a referral to someone else. Editgrl (Chris) had to go to an outside doctor to get her prescription in October when her regular onc refused to prescribe. I wish she'd lived long enough to see if it helped. Here in California it's simple to get a medical marijuana prescription, but apparently you will have to go to extra lengths to get Metformin. Yay, FDA. I feel SO much safer now. There's no middle finger emoji offered or I would use it.  ;)

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4720394/

ConnieSW's picture
ConnieSW
Posts: 1440
Joined: Jun 2012

i somehow missed reading this thread till today. You must have felt like you'd been punched in the stomach when you learned this. I wish you the best guidance possible as you make decisions and move forward. 

Abbycat2's picture
Abbycat2
Posts: 644
Joined: Feb 2014

It makes sense that you had chemo with a grade 3 cancer, even though it was a stage 1a.  And you had radiation treatment as well. I had stage 3a UPSC but radiation treatment was not recommended given the location of my cancer high in the uterus. I think your situation is highly treatable. Not sure if you can have it radiated as that depends on what you had radiated previously.

Wishing you the best,

Cathy 

 

Donna Faye's picture
Donna Faye
Posts: 241
Joined: Jan 2017

derMaus, thanks for the reply. I am going to follow up on getting  prepscription from an intergrative doctor my son sees.

Abbycat2, my radiologist is fantastic and he is going to do internal even though I had 5 brachy in July. He says it is below the area radiated before and he thinks he can not hit the previous area. But,he was honest that it could cause some problem but I do trust him.

Thanks again everyone for your support. It means much as you all know. I am in SC now with my brother's family on a 40 acre farm. The weather is divine and we are sitting by the pool everyday. It has lifted my spirits so much. Leave tomorrow for an overnight visit with my college roommate in Charleston. On Sunday, drive on to Savannah for 3 days with 4 childhood girlfriends to celebrate our 78th birthdays as we all have March/April  dates!!! Have known each other 75years. So thankful we had this trip planned before I got the news and have time to refresh my mind, heart and soul. 

I am pretty sure I am going to roll the dice and NOT do the added chemo. Will hold that for later if needed but bank on the radiation. 20 years ago the doctor was urging me to have a bone marrow transplant for my stage 3 BC. I researched it and they were still in 2nd clinical trail with no proof of effects. I choose not to put myself and my kids through that and survived 20 years NED.  Chemo just does not seem right to me for now. 

 

 

grace_of_god's picture
grace_of_god
Posts: 31
Joined: May 2018

Hi Donna I'm sorry you've got this new spot to deal with and I want to say I really respect your choice to not to the chemo at this point.  I'm 65 but have had chronic health challenges a long time and for me the thought of chemo and radiation is pretty disturbing if it's only buying time I don't think that's how I want to spend it.  For me it's all going to depend of course on where I'm at (hysterectomy thursday) but I will think long and hard about it all.  I hope you're doing well.

CheeseQueen57's picture
CheeseQueen57
Posts: 803
Joined: Feb 2016

Enjoy your precious time with friends and family. It will renew you and prepare you for your current battle. You’re in our hearts and minds. 

Soup52's picture
Soup52
Posts: 902
Joined: Jan 2016

Bless you Donna Faye.prayers that it will all workout.

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1533
Joined: Jun 2015

DonnaFaye - I'm glad you have made a decision that feels right for you. Follow your gut and be at peace with your move forward. 

Love and Hugs,

Cindi

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2584
Joined: Mar 2013

I agree with you, Cindi.  You said it beautifully.

ConnieSW's picture
ConnieSW
Posts: 1440
Joined: Jun 2012

Although chemo was not nearly as bad as I anticipated, I've felt I would think long and hard about doing it again. I'm glad you've been able to make a decision that works for you. 

Your trip sounds marvelous. Savor every minute. 

derMaus's picture
derMaus
Posts: 559
Joined: Nov 2016

Donna Faye, your vacation sounds wonderful. Enjoy every bit of it! I did think of one last item: did your radiation onc say anything about stereotactic radiation, e.g. CyberKnife, rather than general pelvic radiation? Since your recurrence is in a specific area I wonder if they've considered that. Bon voyage!

Donna Faye's picture
Donna Faye
Posts: 241
Joined: Jan 2017

Thought I should update ! I did do the chemo with the external rads ( it is like the cyber knife) enhances the rad beams.Am now almost 5 weeks out from all treatment and feeling good. Bladder and bowel almost back to normal but having to be careful with what I eat. Otherwise doing yardwork, tutoring, and planning on a horseback ride soon.

Glad I listened to the docs and had the chemo as it was not bad at all, just long session(5hrs.) as they give you so much fluid with it.

MugsBugs
Posts: 106
Joined: Jan 2018

That is such good news!  I am so glad you are feeling good and ready to 'get back on that horse' both figuratively and literally!  Good luck to you and keep moving forward!Smile

Harmony09's picture
Harmony09
Posts: 75
Joined: Aug 2017

Hello Donna Faye! 

I'm so glad to hear that your treatments went well, and especially that you're feeling well! I hope I can continue as vibrant and graceful as you have...through every battle you've faced. Thank you for being such an amazing inspiration:)

Sincerity,

Stacey

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