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This Can't be good

Spydergal
Spydergal Member Posts: 54
edited August 24 in Uterine Cancer #1

I received a call from MOFFIT today when I had dirt and dust all over my hands and pants. I had my roomba in pieces as I cleaned everything, removed wheels etc. I didn't get to the phone in time so after I listened to the message from someone named Lindsey that they were wanting to change appointment time. Well I called back and after being transferred a couple of times I reached Lindsey. She told me that Dr Wenham wanted to see me ASAP could they change my September 14 appointment to August 31. Well I'm in panic mode, it's usually not a good thing when a doctor reschedules an appointment because he wants to see you ASAP. I called the other day to schedule a mammogram where I have never been and they asked where did I have my last one. I had to look for my insurance records from 2019 to find out where I had it done. It turns out I had the mammogram done along with the ultrasounds. I told the ARNP who did my PAP in 2019 that I had pink spotting a couple of times and she told me it was probably nothing to worry about. She did have me get a ultrasound of the pelvis through vagina and ultrasound of pelvis including a mammogram on May 20, 2019. I didn't tell my gynecologist because I wasn't sure when it was done and where. I will give her this information when I see her Wednesday. I have a big question ladies. Shouldn't there have been some sign something wasn't right two years ago? Does a endometrial lining grow to 13mm that quickly? Why the he'll didn't they see anything? Why was I told by this ARNP that they found nothing wrong? What the hell? I am both scared about the change of my appointment and angry this was missed and my concerns were completely dismissed. I could be wrong because I don't know how this cancer works. However, I am feeling like this didn't have to happen. Can anybody explain how this might have been missed. Am I wrong to be scared about the ASAP appointment change? I hope I'm not being totally hysterical, I don't want to be that person.

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Comments

  • MAbound
    MAbound Member Posts: 1,156 **
    I hear your panic, but I

    I hear your panic, but I would again encourage you to avoid making these assumptions while you are waiting to get your answers. Doing so helps nothing because there is no way to do anything about it.

    This is not me dismissing your anxiety, but instead I would urge you to call your PCP ASAP to prescribe you an anti-anxiety med to help you get through this. Getting diffinitive answers to what lies ahead for you has and is going to take more time and it's painful to read how much suffering not knowing is causing you. You need to be able to live some semblance of your life as you go through this because the whole process is a marathon and not a sprint for you to get through. Your upcoming appointment is likely to go more smoothly if you are not in a state of panic when you arrive for it. You have a lot of questions and you need to be able to hear and retain the answers you receive.

    Don't think you are alone in how this is affecting you. Many here have needed help coping with the anxiety until things settle down and you have answers and a plan of action. If ever there were a circumstance where anxiety is well-warranted, this is it. Please reach out for the help and care you need.

     

  • BluebirdOne
    BluebirdOne Member Posts: 475 **
    No such thing as being too scared. hysterical, angry or confused

    You are allowed to be all those things. Many of us felt the same way when we were trying to get dx. I would guess that they moved your appointment up due to a cancelation, and they know that everyday we spend not knowing is so hard on us. Breathe, we are here to help you navigate this and we know how hard it is for you. Let us know how you are doing. 

     

    xoxo

    Denise

     

  • Kathy G.
    Kathy G. Member Posts: 235 **
    Spydergal,

    Spydergal,

    The advice about asking for an anti-anxiety med during this time is an excellent suggestion!

    As Denise has mentioned you are allowed to feel scared, hysterical, angry & confused! The waiting is hell, and having time to think we play out worse case scenarios in our head!

    In reference to you feeling like things should have been looked at more closely in 2019...maybe yes or maybe no. Looking back however is normal, but an energy waster. Try not to go there. Keep moving forward. 

    If you have read through alot of the stories on this board you learn there are many kinds of endometrial cancer and symptoms present differently depending on the type of cancer and the woman experiencing symptoms.

    I had a abnormal PAP for the first time in my life two years before my diagnosis. I was told it was likely due to me entering menopause so no cause for concern.

    The following year I had many UTIs with blood in my urine, but was told it was from the infections. Later that year I began spotting. That's when I got diagnosed with my slow growing,  garden variety stage 1 cancer.

    Looking back I think the abnormal PAP, and then blood in urine were indicators cancer had taken root, but there's no way of knowing. I am just grateful it gwas caught when it was!

    Try to be grateful your appointment was moved up so you can get some answers, and the ball rolling. Make a list of questions you want to ask when the anxiety hits. Think about the anti-anxiety meds suggestion. And try to stay busy.

    Hugs!

    Kathy

  • MoeKay
    MoeKay Member Posts: 354 **
    edited August 25 #5
    Sounds like a well-run practice

    I'm really impressed by the fact that the gyn-onc is cutting your waiting and worrying time by two weeks!  It sounds like a very considerate and well-run office.  I wouldn't read anything negative into the change in your appointment date.  I suspect that there was an opening and the staff are well aware of how long waits for appointments cause patients added stress in an already highly stressful situation.  Whatever experiences you've had in the past, I think you're on the right track now!! 

    Wishing you the best of luck at your upcoming appointment! 

  • Harmanygroves
    Harmanygroves Member Posts: 302 **
    edited August 25 #6
    Your Personality, Spydergall

    If you were a band, you'd be Steve Miller Band ---happy, excited, earthy.

    If you were a color, you'd be either red--engaged---or yellow, sunny.

    If you were a dog, you'd be a Lab Retriever, loyal but bouncy.

    You are not afraid to express your emotions, so we here on the board have to let you know we care about you! We're here, and Kathy G. and others are right ----Grrrrrlllllll let your doctors know you're scared, and if you need to, do some meds.

    We all want you healthy!

    And it's VERY GOOD that your clinic knows you're in a hurry, so they bumped you forward! It can't be good? It is EXCELLENT. They heard your anxiety, they knew you wanted to get 'er done fast, and they responded to YOUR needs! You have done a great job of self advocating. 

    I'm so impressed! And you found your way here, and how 'bout them apples?

    Take deep breaths. We are your tribe. 

    "The Other Deb"

  • Lyn70
    Lyn70 Member Posts: 64
    edited August 26 #7
    No HPV-No Need for Future Exams?

     So Grateful that your appointment has been moved up to 8/31! Less time spent in anxiety and pondering fearful scenarios for you!  I encourage you to ask your questions. Breathe! One Day at a Time is such a great motto. 

    I went to an ob, at the insistence of my Primary, at age 64. This was one year post Lymphoma colon surgery and 3 rounds of chemo. The ob ran an HPV test and did a pelvic exam. I was told, since the HPV was negative, I didn't need any follow-up appointments. No warning about post menopausal bleeding considering my risk factors of obesity, diabetes, early onset period and never having a child. Fast forward to age 70 and post menopausal bleeding and a friend who told me Definately Not Normal! Subsequent biopsy, surgery and endometrial adenocarcinoma stage IIIA.

    Certainly, I wish I knew then what I know now but I am grateful for the great friend, ob, ob oncologist and radiology oncologist and the wise women on this site who have helped me to be where I am today, a lady full of gratitude for life! 

     

     

  • Lyn70
    Lyn70 Member Posts: 64
       

     Spydergal, Please keep us posted as you are able. 

    Hugs! 

     

     

  • t519
    t519 Member Posts: 31
    How are you, Spydergal?

    Hi, 

    I know your appointment was going to be today. I just wanted to check on you and see how you are holding up? 

     

    Tiff 

  • Harmanygroves
    Harmanygroves Member Posts: 302 **
    Hey Spydie!

    Let us know how you are doing? Also, thanks for showing me some love this morning when I was having a horrible time stressing about my vag. It's rough, but the road is easier with friends. 

  • Spydergal
    Spydergal Member Posts: 54
    edited September 1 #11
    Yesterday’s Appointment

    Hi ladies, well I met Dr Wenham and his staff at MOFFITT yesterday and he is very nice, takes his time explaining things in non medical terms so I could understand. I decided to give the in office biopsy the ole college try. Hell, I've had most of my left leg hacksawed off so how bad could a biopsy be? REAL!!!!BAD!!! You gals were right as usual, it was so painful and the ARNP couldn't even get past my cervix so she was humane enough to stop. Dr Wenham was very understanding and will be doing a D&C, I signed all the papers and handed the preop instructions and map to get to the other campus. They will call a week before the procedure for the preop. He told me cancer is unlikely, I will probably have to take Progesterone to control the lining's growth. He told me it would cause bleeding; great. After a lifetime suffering from endometriosis, irregular bleeding and periods so bad sometimes I passed out, I couldn't wait for menopause-No more Tampax or Kotex pads for this girl, oh well, Kotex is better than Depends, LOL. Some Where there's humor in all this right? I will keep you all updated. I am still concerned that excess growth of any tissue even when benign is risky to allow it to continue. I asked the doctor wouldn't it be safer to just have a hysterectomy and remove any risk of cancer in the future? I was told that no insurance company will pay for a hysterectomy unless there is a strong probability of cancer like if precancerous cells were found during the D&C. Hysterectomys aren't considered an acceptable preventative measure when cheaper less invasive measures exist such a progesterone treatment. Have any of you been treated with progesterone and did it work, were there any side effects? Has anybody had a D&C that didn't find any cancerous or precancerous cells yet still got cancer later? 

  • cmb
    cmb Member Posts: 751 **
    edited September 1 #12
    Spydergal said:

    Yesterday’s Appointment

    Hi ladies, well I met Dr Wenham and his staff at MOFFITT yesterday and he is very nice, takes his time explaining things in non medical terms so I could understand. I decided to give the in office biopsy the ole college try. Hell, I've had most of my left leg hacksawed off so how bad could a biopsy be? REAL!!!!BAD!!! You gals were right as usual, it was so painful and the ARNP couldn't even get past my cervix so she was humane enough to stop. Dr Wenham was very understanding and will be doing a D&C, I signed all the papers and handed the preop instructions and map to get to the other campus. They will call a week before the procedure for the preop. He told me cancer is unlikely, I will probably have to take Progesterone to control the lining's growth. He told me it would cause bleeding; great. After a lifetime suffering from endometriosis, irregular bleeding and periods so bad sometimes I passed out, I couldn't wait for menopause-No more Tampax or Kotex pads for this girl, oh well, Kotex is better than Depends, LOL. Some Where there's humor in all this right? I will keep you all updated. I am still concerned that excess growth of any tissue even when benign is risky to allow it to continue. I asked the doctor wouldn't it be safer to just have a hysterectomy and remove any risk of cancer in the future? I was told that no insurance company will pay for a hysterectomy unless there is a strong probability of cancer like if precancerous cells were found during the D&C. Hysterectomys aren't considered an acceptable preventative measure when cheaper less invasive measures exist such a progesterone treatment. Have any of you been treated with progesterone and did it work, were there any side effects? Has anybody had a D&C that didn't find any cancerous or precancerous cells yet still got cancer later? 

    Good news about the doctor

    I'm happy to hear that you like the new doctor. I've had three different doctors try the in-office biopsy -none of mine were successful either. Some people may think I've exaggerated the pain I felt during the attempts, but I don't feel like such a wuss if you found it worse than losing a leg!

    I've had two D&Cs due to post-menopausal vaginal bleeding. The first D&C found a benign polyp that, once removed, stopped the bleeding. Nine years later, a new batch of vaginal bleeding. The second D&C found cancer that time. I can't comment on progesterone since I never took it.

    My sister did have a hysterectomy in her 40s because she had had excessive bleeding during her periods her whole life. And my good friend had one at about the same age due to recurring fibroids. So doctors will perform them for reasons other than cancer. If the pathology from the D&C comes back negative, this may be something you can pursue later, given your past history.

  • Harmanygroves
    Harmanygroves Member Posts: 302 **
    Spydergal said:

    Yesterday’s Appointment

    Hi ladies, well I met Dr Wenham and his staff at MOFFITT yesterday and he is very nice, takes his time explaining things in non medical terms so I could understand. I decided to give the in office biopsy the ole college try. Hell, I've had most of my left leg hacksawed off so how bad could a biopsy be? REAL!!!!BAD!!! You gals were right as usual, it was so painful and the ARNP couldn't even get past my cervix so she was humane enough to stop. Dr Wenham was very understanding and will be doing a D&C, I signed all the papers and handed the preop instructions and map to get to the other campus. They will call a week before the procedure for the preop. He told me cancer is unlikely, I will probably have to take Progesterone to control the lining's growth. He told me it would cause bleeding; great. After a lifetime suffering from endometriosis, irregular bleeding and periods so bad sometimes I passed out, I couldn't wait for menopause-No more Tampax or Kotex pads for this girl, oh well, Kotex is better than Depends, LOL. Some Where there's humor in all this right? I will keep you all updated. I am still concerned that excess growth of any tissue even when benign is risky to allow it to continue. I asked the doctor wouldn't it be safer to just have a hysterectomy and remove any risk of cancer in the future? I was told that no insurance company will pay for a hysterectomy unless there is a strong probability of cancer like if precancerous cells were found during the D&C. Hysterectomys aren't considered an acceptable preventative measure when cheaper less invasive measures exist such a progesterone treatment. Have any of you been treated with progesterone and did it work, were there any side effects? Has anybody had a D&C that didn't find any cancerous or precancerous cells yet still got cancer later? 

    Oh, Yay!

    We will be standing by with you! I'm so sorry you had to give that old biopsy a try, but not surprised you decided to go for the D & C. Thank God for all of us hanging out and keeping a protective eye on our Spydergal!

    Glad you are getting yourself all sorted out.

    Deb 2

  • oldbeauty
    oldbeauty Member Posts: 319 **
    Spydergal said:

    Yesterday’s Appointment

    Hi ladies, well I met Dr Wenham and his staff at MOFFITT yesterday and he is very nice, takes his time explaining things in non medical terms so I could understand. I decided to give the in office biopsy the ole college try. Hell, I've had most of my left leg hacksawed off so how bad could a biopsy be? REAL!!!!BAD!!! You gals were right as usual, it was so painful and the ARNP couldn't even get past my cervix so she was humane enough to stop. Dr Wenham was very understanding and will be doing a D&C, I signed all the papers and handed the preop instructions and map to get to the other campus. They will call a week before the procedure for the preop. He told me cancer is unlikely, I will probably have to take Progesterone to control the lining's growth. He told me it would cause bleeding; great. After a lifetime suffering from endometriosis, irregular bleeding and periods so bad sometimes I passed out, I couldn't wait for menopause-No more Tampax or Kotex pads for this girl, oh well, Kotex is better than Depends, LOL. Some Where there's humor in all this right? I will keep you all updated. I am still concerned that excess growth of any tissue even when benign is risky to allow it to continue. I asked the doctor wouldn't it be safer to just have a hysterectomy and remove any risk of cancer in the future? I was told that no insurance company will pay for a hysterectomy unless there is a strong probability of cancer like if precancerous cells were found during the D&C. Hysterectomys aren't considered an acceptable preventative measure when cheaper less invasive measures exist such a progesterone treatment. Have any of you been treated with progesterone and did it work, were there any side effects? Has anybody had a D&C that didn't find any cancerous or precancerous cells yet still got cancer later? 

    There may be a difference

    Hi Spydergal.  Taking progesterone for a non-cancerous thickened lining and taking progesterone in response to confirmed cancer may be different.  I can tell you that I took 200 mg of Provera (similar to but not the same as megestrol; it was prescribed for me while living overseas) twice a day for 4 years (or maybe 800 mg/day; doesn't matter).  My situation at the time was certain cancer in a lymph node that was radiated successfully in addition to several small lesions on both lungs.  The radiation knocked out the cancer in the lymph node, and, over the next few years on Provera I reached NED status. The lesions we're not biopsied but they disappeared.  So, I'd say Provera more than likely did the job. But you have to take it at high doses and eventually it ceases to be effective.  Also, it had the effect of shutting down my adrenal gland (there's meds for that).  I don't wish precancerous cells on you, but a hysterectomy would be a two-fer for you. Good luck and best wishes.  Oldbeauty

  • Spydergal
    Spydergal Member Posts: 54
    cmb said:

    Good news about the doctor

    I'm happy to hear that you like the new doctor. I've had three different doctors try the in-office biopsy -none of mine were successful either. Some people may think I've exaggerated the pain I felt during the attempts, but I don't feel like such a wuss if you found it worse than losing a leg!

    I've had two D&Cs due to post-menopausal vaginal bleeding. The first D&C found a benign polyp that, once removed, stopped the bleeding. Nine years later, a new batch of vaginal bleeding. The second D&C found cancer that time. I can't comment on progesterone since I never took it.

    My sister did have a hysterectomy in her 40s because she had had excessive bleeding during her periods her whole life. And my good friend had one at about the same age due to recurring fibroids. So doctors will perform them for reasons other than cancer. If the pathology from the D&C comes back negative, this may be something you can pursue later, given your past history.

    CMB

    A BIG LOL, to my fellow WUSS. 

  • t519
    t519 Member Posts: 31
    Spydergal said:

    Yesterday’s Appointment

    Hi ladies, well I met Dr Wenham and his staff at MOFFITT yesterday and he is very nice, takes his time explaining things in non medical terms so I could understand. I decided to give the in office biopsy the ole college try. Hell, I've had most of my left leg hacksawed off so how bad could a biopsy be? REAL!!!!BAD!!! You gals were right as usual, it was so painful and the ARNP couldn't even get past my cervix so she was humane enough to stop. Dr Wenham was very understanding and will be doing a D&C, I signed all the papers and handed the preop instructions and map to get to the other campus. They will call a week before the procedure for the preop. He told me cancer is unlikely, I will probably have to take Progesterone to control the lining's growth. He told me it would cause bleeding; great. After a lifetime suffering from endometriosis, irregular bleeding and periods so bad sometimes I passed out, I couldn't wait for menopause-No more Tampax or Kotex pads for this girl, oh well, Kotex is better than Depends, LOL. Some Where there's humor in all this right? I will keep you all updated. I am still concerned that excess growth of any tissue even when benign is risky to allow it to continue. I asked the doctor wouldn't it be safer to just have a hysterectomy and remove any risk of cancer in the future? I was told that no insurance company will pay for a hysterectomy unless there is a strong probability of cancer like if precancerous cells were found during the D&C. Hysterectomys aren't considered an acceptable preventative measure when cheaper less invasive measures exist such a progesterone treatment. Have any of you been treated with progesterone and did it work, were there any side effects? Has anybody had a D&C that didn't find any cancerous or precancerous cells yet still got cancer later? 

    Thanks for the update!

    I was happy to read that you appreciated your new doctor. That makes all the difference in the world. I also had to smile at your writing about giving it the "ole college try" regarding the biopsy. I had one last Friday and was not a fan. I am pretty sure I was close to kicking the doctor in the face. I was also placed on Provera (progesterone), as I was told this would help thin my lining prior to the hysteroscopy. I switched insurance, and began with a new doctor today. I felt so much more comfortable with her. Her suggestion was for me to stop with the Provera (as I seemed to have continued my period since August 12th on it), and she has me in for a hysteroscopy, D&C, and polypectomy next Tuesday (with possible myomectomy). My endometrial biopsy came back negative for malignancy, but it mentioned the polyp and I want to be certain I check all the boxes in having this looked at. This forum has been insightful in understanding the importance of thorough investigations by knowledgable doctors. 

    I asked the doctor today the exact same thing, "can't we just take all of this out already"? There is so much I didn't know before joining this forum, and I feel like if I happen to sneak by without cancer cells this time, I just don't want to mess with it anymore. As much as I grow colorectal polyps and have to deal with visiting a doctor for colonoscopies every 6 months at the moment, I am happy to remove parts where I could TRY to avoid something?!?!

    Again, I am so happy to hear that you seem to be in good hands now with your doctor and the team. I also love the humor sprinkled in your postings in the middle of an exhausting time. I am thinking of you and sending positive vibes and tons of hugs. 

  • Harmanygroves
    Harmanygroves Member Posts: 302 **
    t519 said:

    Thanks for the update!

    I was happy to read that you appreciated your new doctor. That makes all the difference in the world. I also had to smile at your writing about giving it the "ole college try" regarding the biopsy. I had one last Friday and was not a fan. I am pretty sure I was close to kicking the doctor in the face. I was also placed on Provera (progesterone), as I was told this would help thin my lining prior to the hysteroscopy. I switched insurance, and began with a new doctor today. I felt so much more comfortable with her. Her suggestion was for me to stop with the Provera (as I seemed to have continued my period since August 12th on it), and she has me in for a hysteroscopy, D&C, and polypectomy next Tuesday (with possible myomectomy). My endometrial biopsy came back negative for malignancy, but it mentioned the polyp and I want to be certain I check all the boxes in having this looked at. This forum has been insightful in understanding the importance of thorough investigations by knowledgable doctors. 

    I asked the doctor today the exact same thing, "can't we just take all of this out already"? There is so much I didn't know before joining this forum, and I feel like if I happen to sneak by without cancer cells this time, I just don't want to mess with it anymore. As much as I grow colorectal polyps and have to deal with visiting a doctor for colonoscopies every 6 months at the moment, I am happy to remove parts where I could TRY to avoid something?!?!

    Again, I am so happy to hear that you seem to be in good hands now with your doctor and the team. I also love the humor sprinkled in your postings in the middle of an exhausting time. I am thinking of you and sending positive vibes and tons of hugs. 

    Much to Celebrate!

    Your news is great, T, and I'm also happy that things are looking up for so many on our forum--Spyder, with her amazing joi de vie (sigh, I shouldn't be 'doing' French, ha ha!); Deb 1 with recent good news; and me, as just yesterday Gyn Onc declared me "NED" for the time being, which I'm delighted about. 

    Celebrate good times, C'mon!

  • MAbound
    MAbound Member Posts: 1,156 **

    Much to Celebrate!

    Your news is great, T, and I'm also happy that things are looking up for so many on our forum--Spyder, with her amazing joi de vie (sigh, I shouldn't be 'doing' French, ha ha!); Deb 1 with recent good news; and me, as just yesterday Gyn Onc declared me "NED" for the time being, which I'm delighted about. 

    Celebrate good times, C'mon!

    Congratulations!

    NED is the prize we all put ourselves through so much for! May your dance with him go on and on!

  • alicia2020
    alicia2020 Member Posts: 164 **
    edited September 2 #19
    Great!

    So happy to see you ladies have good news! Yay!

    ❤️❤️❤️, Alicia 

  • cmb
    cmb Member Posts: 751 **
    edited September 2 #20

    Much to Celebrate!

    Your news is great, T, and I'm also happy that things are looking up for so many on our forum--Spyder, with her amazing joi de vie (sigh, I shouldn't be 'doing' French, ha ha!); Deb 1 with recent good news; and me, as just yesterday Gyn Onc declared me "NED" for the time being, which I'm delighted about. 

    Celebrate good times, C'mon!

    Congrats

    It's so satisfying to hear "NED" after treatment, isn't it? Enjoy the sense of satisfaction that all the past months' efforts have been worth it.

  • Harmanygroves
    Harmanygroves Member Posts: 302 **
    edited September 2 #21
    NED's the man ;)

    Thanks, all. It took some time...