Need to hear from you ladies re path report

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  • SF73
    SF73 Member Posts: 317 Member
    #22
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    Kaleena said:

    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

    How was your MRI?

    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. 

  • SF73
    SF73 Member Posts: 317 Member
    #23
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    Donna Faye said:

    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!

    Good luck with your meeting

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

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    #24
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    Latest report

    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.  

  • derMaus
    derMaus Member Posts: 558 Member
    edited February 2018 #25
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    Great news that it's

    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
    Donna Faye Member Posts: 427 Member
    #26
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    derMaus

    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...

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #27
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    SF73 said:

    How was your MRI?

    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. 

    I just had my MRI on MOnday

    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

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,371 Member
    #28
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    derMaus - I never wrapped my

    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!

  • Armywife
    Armywife Member Posts: 451 Member
    #29
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    Kaleena said:

    I just had my MRI on MOnday

    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

    Have you heard?

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

  • pinky104
    pinky104 Member Posts: 574 Member
    #30
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    Donna Faye said:

    derMaus

    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...

    Donna Faye

    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.

  • SF73
    SF73 Member Posts: 317 Member
    #31
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    Donna Faye said:

    Latest report

    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.  

    Such great news!

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

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    #32
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    see my new thread

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

  • Donna Faye
    Donna Faye Member Posts: 427 Member
    #33
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    dermaus

    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
    derMaus Member Posts: 558 Member
    #34
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    I'm happy if you found any

    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
    ConnieSW Member Posts: 1,678 Member
    #35
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    Donna Faye

    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. 

  • ConnieSW
    ConnieSW Member Posts: 1,678 Member
    #36
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    Kaleena said:

    I just had my MRI on MOnday

    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

    True Grit

    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. 

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
    #37
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    Donna, I am sorry to hear about your recurrence.

    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
    Donna Faye Member Posts: 427 Member
    #38
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    Update

    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. 

     

     

  • CheeseQueen57
    CheeseQueen57 Member Posts: 933 Member
    #39
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    Enjoy

    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
    Soup52 Member Posts: 908 Member
    #40
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    Bless you Donna Faye.prayers

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

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,811 Member
    #41
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    DonnaFaye - I'm glad you have

    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

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