I'm back and hoping for help please :(
Comments
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Nellasing thank you
I am going to edit my post tomorrow when I get the pathology report. I cannot believe I didn't write down the name but in the past he has always handed me the papers after he reviews them. I think because I talked so much today he forgot.
I did try the chat room but it was soo confusing. I haven't done chat rooms, only private messaging on FB and it was so different. People knew each other's real names and referred to each other by those names so I had no idea who was talking to whom. Several were very welcoming and asked if I had questions. So I was able to "talk" to "real people" in real time, but it was overwhelming. I am definitely not high tech enough and also have no idea what all the chat abbreviations are. So, while I appreciated the opportunity it was awkward. Also, since there are both men and women there it was uncomfortable to be as open as I feel I can be here. I know that is not politically correct to say but it is just my comfort level. And now I am going to contradict myself with my next statement. People seem very open to discuss breast cancer and all it entails but no one seems to say uterine cancer or cervical cancer. My MIL refers to it as "female problems." When my husband gave her a vague, quick explanation of what was going on she wanted to put me on the prayer list for "female problems." I declined. Prayers are great, but that euphemism made me cringe.
So it is almost 3 am and hopefully I can fall asleep.
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Atypical Glandular Cells, ACS 24-Hour Hotline
Like many people here, my diagnosis evolved over a period of time and the wait was excruciating. Everyone told me to take one step at a time. Looking back, I realize I had no other choice. But when I in the middle of it, only information could really soothe my fears and I certainly wasn't getting it from my doctor. I was on the verge of imploding when a survivor friend recommended the American Cancer Society's 24-hour hotline. It's free and you can call them any time at 1-800-227-2345. Cancer information specialists staff the line; some are fantastic, some are meh, but all are highly trained and professional. If I didn't jell with someone, I just listened, thanked them, then called back the next day. Truly those folks kept me from losing my mind.
I, too, had atypical glanduar cells, which can sound ominous. Unfortunately in my case they were, but they were also a huge blessing: I was in perimenopause (despite being 59 years old) and still having semi-regular periods. I had an extremely thick endometrium obscured by large fibroids, and lived with constant discharge and spotting because I - and my doctor - believed the symptoms were of approaching menopause. I say this not to scare you, but to offer another perspective: that atypical glandular cell probably saved my life. I had a TAH right after Thanksgiving and am midway through chemo, which I'm tolerating well. If not for that pap smear, I'd be waiting around for menopause while things got really out of control. I, also, encourage you to have a gynecological oncologist do your surgery. Any surgery when there's cancer - or even the possibility of cancer - incurs a risk of scattering loose cells that then take root. Fortunately my oncologist was an excellent surgeon; she had to be to get clear margins and remove 36 lymph nodes so cleanly with absolutely no after effects. With luck, you've had time to reveiw your path report and are feeling much better about your situation so none of this information will be needed, but I wanted to share my experience with you because so many had been kind enough to share theirs, and it always helped my perspective. Best wishes and please keep us informed!
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I too recommend Gyn/oncologist
I too recommend to have the gyn/oncologist do the surgery, not just stand by. My regular gyn wanted to do the surgery with gyn/oncologist standing by. So glad I had experienced gyn/oncologist do surgery because surgery ended up being much more complicated than anticipated. Good luck.
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DerMaus, I just commented on
DerMaus, I just commented on another thread about having large fibroids when still having periods. I also thought heavier bleeding was part of menaupause... I wish I had pursued something then such as a hysterectomY more education needs to get out there about our cancer!
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derMaus, thank youderMaus said:Atypical Glandular Cells, ACS 24-Hour Hotline
Like many people here, my diagnosis evolved over a period of time and the wait was excruciating. Everyone told me to take one step at a time. Looking back, I realize I had no other choice. But when I in the middle of it, only information could really soothe my fears and I certainly wasn't getting it from my doctor. I was on the verge of imploding when a survivor friend recommended the American Cancer Society's 24-hour hotline. It's free and you can call them any time at 1-800-227-2345. Cancer information specialists staff the line; some are fantastic, some are meh, but all are highly trained and professional. If I didn't jell with someone, I just listened, thanked them, then called back the next day. Truly those folks kept me from losing my mind.
I, too, had atypical glanduar cells, which can sound ominous. Unfortunately in my case they were, but they were also a huge blessing: I was in perimenopause (despite being 59 years old) and still having semi-regular periods. I had an extremely thick endometrium obscured by large fibroids, and lived with constant discharge and spotting because I - and my doctor - believed the symptoms were of approaching menopause. I say this not to scare you, but to offer another perspective: that atypical glandular cell probably saved my life. I had a TAH right after Thanksgiving and am midway through chemo, which I'm tolerating well. If not for that pap smear, I'd be waiting around for menopause while things got really out of control. I, also, encourage you to have a gynecological oncologist do your surgery. Any surgery when there's cancer - or even the possibility of cancer - incurs a risk of scattering loose cells that then take root. Fortunately my oncologist was an excellent surgeon; she had to be to get clear margins and remove 36 lymph nodes so cleanly with absolutely no after effects. With luck, you've had time to reveiw your path report and are feeling much better about your situation so none of this information will be needed, but I wanted to share my experience with you because so many had been kind enough to share theirs, and it always helped my perspective. Best wishes and please keep us informed!
I tried the ACS 1-800 # before I found this board. They were very interested in my home address and phone #, which I did not provide. I quickly became very frustrated because I was expecting to speak with a "highly trained" person, and I do not feel that was the case in my experience.
My husband still does not know that I found this board, or that I am posting here. He is very much a one step at a time, deal with the current information type of man. Which is an excellent balance for me.
I absolutely was on implosion mode when I updated my first post with the plea for help. Thankfully, so many gracious ladies responded. It helped in a way that is hard to explain, but that I know all of you understand.
My endometrial canal is 17.8mm, and there was no clear line in the middle. There are three polyps. The in office endometrial biopsy showed nothing but he stressed that he needs to see inside to make sure he is sampling the abnormal areas. Having read a few abstacts re: atypical glandular cells I too am very concerned. Knowing that there is a possiblity that they are benign reassures me but the pain and the size of my abdomen, paired with the period from hell gives me pause. Follow up for the D&C will incl. ongoing monitoring of the ovarian cyst, which will be another sonogram.
There is no feasible way for me to go to a larger medical facility. My husband is awaiting surgery for cervical stenosis; the neurosurgeon office has not yet called back. He drives me to appt. We have an older car and a tight budget. I spoke with my gyn. about the role of the gyn, oncologist and it will be the gyn. oncologist, assisted by my gyn. doing the surgery. He said it is typically a two person job. As far as clear margins and removal of lymph nodes it will be the gyn. oncologist handling that, from what I understand. If we move forward to the hysterectomy I will definitely confirm these things.
I absolutely appreciate and respect all of you stressing the importance of the gyn. oncologist. The notion was first introduced to me by my gyn. when he explained that the 5 year survival rate is higher for women cared for by a gyn. oncologist. Also, from the two professional journal articles I read re: atypical glandular cells he is following the recommended protocol as far as diagnostic tests and the order of things. At this point, I feel comfortable. If the next set of biopsies require further treatment I will definitely seek feedback here and express any and all ?'s and concerns w/ my gyn.
As far as my cervical biopsy report, it just seems to be something to monitor. There is nothing there to indicate the need for anything further. But, I was so overheated and had been seating on that table far too long. Plus there was a student, so 4 of us in a tiny exam room. For next time my plan is to take a Valium before the meeting, whether I am anxious at home or not. Then I am going to request to be put in the room w/ the rocking chair (which I think is the baby room) as it has the rocker, another chair, and is both larger and cooler. Finally, I am going to ask to be allowed to return to the waiting room once the nurse assesses me and before the doctor is ready to talk with me. Since it is usually a considerable time, I will be much less anxious if I don't feel "trapped" in the exam room.
I will update on Tuesday.
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thank you cheese queenCheeseQueen57 said:I too recommend Gyn/oncologist
I too recommend to have the gyn/oncologist do the surgery, not just stand by. My regular gyn wanted to do the surgery with gyn/oncologist standing by. So glad I had experienced gyn/oncologist do surgery because surgery ended up being much more complicated than anticipated. Good luck.
The gyn. oncologist will be doing the surgery, assisted by my gyn. The gyn. oncologist will no be standing by just to do the staging.
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Soup 52, I absolutely agreeSoup52 said:DerMaus, I just commented on
DerMaus, I just commented on another thread about having large fibroids when still having periods. I also thought heavier bleeding was part of menaupause... I wish I had pursued something then such as a hysterectomY more education needs to get out there about our cancer!
I will update after my D&C on Tuesday.
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Soup - Ain't That The Truth!Soup52 said:DerMaus, I just commented on
DerMaus, I just commented on another thread about having large fibroids when still having periods. I also thought heavier bleeding was part of menaupause... I wish I had pursued something then such as a hysterectomY more education needs to get out there about our cancer!
Yes!! I'm so glad you're spreading the word on this! Years ago I had a myomectomy rather than a hysterectomy, because I thought - and still think - doctors are too hysterectomy-happy. Afterwards, nobody ever mentioned monitoring or anything else, until I wound up here. It's like an all-or-nothing proposition.
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Very good plans!nateandkatesmom said:derMaus, thank you
I tried the ACS 1-800 # before I found this board. They were very interested in my home address and phone #, which I did not provide. I quickly became very frustrated because I was expecting to speak with a "highly trained" person, and I do not feel that was the case in my experience.
My husband still does not know that I found this board, or that I am posting here. He is very much a one step at a time, deal with the current information type of man. Which is an excellent balance for me.
I absolutely was on implosion mode when I updated my first post with the plea for help. Thankfully, so many gracious ladies responded. It helped in a way that is hard to explain, but that I know all of you understand.
My endometrial canal is 17.8mm, and there was no clear line in the middle. There are three polyps. The in office endometrial biopsy showed nothing but he stressed that he needs to see inside to make sure he is sampling the abnormal areas. Having read a few abstacts re: atypical glandular cells I too am very concerned. Knowing that there is a possiblity that they are benign reassures me but the pain and the size of my abdomen, paired with the period from hell gives me pause. Follow up for the D&C will incl. ongoing monitoring of the ovarian cyst, which will be another sonogram.
There is no feasible way for me to go to a larger medical facility. My husband is awaiting surgery for cervical stenosis; the neurosurgeon office has not yet called back. He drives me to appt. We have an older car and a tight budget. I spoke with my gyn. about the role of the gyn, oncologist and it will be the gyn. oncologist, assisted by my gyn. doing the surgery. He said it is typically a two person job. As far as clear margins and removal of lymph nodes it will be the gyn. oncologist handling that, from what I understand. If we move forward to the hysterectomy I will definitely confirm these things.
I absolutely appreciate and respect all of you stressing the importance of the gyn. oncologist. The notion was first introduced to me by my gyn. when he explained that the 5 year survival rate is higher for women cared for by a gyn. oncologist. Also, from the two professional journal articles I read re: atypical glandular cells he is following the recommended protocol as far as diagnostic tests and the order of things. At this point, I feel comfortable. If the next set of biopsies require further treatment I will definitely seek feedback here and express any and all ?'s and concerns w/ my gyn.
As far as my cervical biopsy report, it just seems to be something to monitor. There is nothing there to indicate the need for anything further. But, I was so overheated and had been seating on that table far too long. Plus there was a student, so 4 of us in a tiny exam room. For next time my plan is to take a Valium before the meeting, whether I am anxious at home or not. Then I am going to request to be put in the room w/ the rocking chair (which I think is the baby room) as it has the rocker, another chair, and is both larger and cooler. Finally, I am going to ask to be allowed to return to the waiting room once the nurse assesses me and before the doctor is ready to talk with me. Since it is usually a considerable time, I will be much less anxious if I don't feel "trapped" in the exam room.
I will update on Tuesday.
You are doing absolutely wonderfully about making sure you have the info you need and also doing the self care that is critical to you being comfortable- what a great thing you have done to make those plans ahead of time - that will serve you well for the rest of your life. Why does it take SO LONG for us to be kind to ourselves? Gold star for YOU and thank you for sharing- one of our "peachy" sisters may need this info. I'm going to practice being as kind to myself as I am to others too (((HUGS)))
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thank you, NellasingNellasing said:Very good plans!
You are doing absolutely wonderfully about making sure you have the info you need and also doing the self care that is critical to you being comfortable- what a great thing you have done to make those plans ahead of time - that will serve you well for the rest of your life. Why does it take SO LONG for us to be kind to ourselves? Gold star for YOU and thank you for sharing- one of our "peachy" sisters may need this info. I'm going to practice being as kind to myself as I am to others too (((HUGS)))
If I would have asked to either be moved to the other room or to wait in the waiting room after the nurse assessment and before the dr. was ready for me I would have remained much calmer. Sitting on that table spikes my anxiety and spikes my pelvic pain. I usually end up sitting cross legged. While he was talking I was balanced on one hip, one leg under me and the other hugged to my chest by both arms while my hands shredded the wet paper towel that had been around my neck. Quite a picture I must have made!
I also forgot to use my roll on aromatherapy. (it is called, "Stress Relief" and has eucolyptus.) I also forgot a cold drink and some ice packs for the pain in my back and pelvic area. I just didn't think it would take so long. The thing is, since he delivers babies, you never know ahead of time if he is running behind schedule.
I am now going to approach my appointments as I used to approach my childrens' appointments. If there was a window, I turned off the overhead lights. I brought books and toys and non messy snacks and juice boxes. I brought a favorite blanket or stuffed animal. When they were older I still took gatorade, a book, and drawing stuff or music.
As you say, we need to do self care, both for our benefit and for the benefit of the medical staff. This way we are much calmer, rational, and the appt. will go quicker. (From my lips to God's ears.)
Thanks especially for the gold star and hugs.
Dorothy
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UTI
Over the weekend I thought I might be developing a UTI. Well, I was right. Starting antibiotics today. Called gyn to let them know and also to ask about AZO for the burning. Well, thankfully I can still have the D&C tomorrow but the nurse said he doesn't want me to take the AZO. And no Ibuprophen since last Thursday d/t the upcoming procedure.
One final note to self. Do not watch a You Tube video showing the procedure. I don't think my legs will go like that. I can read ANYTHING and not have issues, but being a visual person I should not have watched that video.
Thank you all for being there to talk to. I have been coming back here everyday and reading the new posts, even when I don't comment.
Dorothy
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UTI
Hopefully the antibiotics are helping. Good luck tomorrow.
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thank you Cheese Queen!
I only started the med. this evening; my daughter had the car to go to a college classe. I am surrounded by ice packs, which is helping.
Dorothy
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Sitz Bath
Sitz baths helped me with burning of UTI
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yes, I took warm baths over the weekend
CheeseQueen
Thank you. Saturday night I spent a few hours in the tub, emptying and refilling as the water cooled. I also lit some candles and the aroma helped distract me. Dorothy
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Editgirl and Nellasing thank you!
I am just hopeful the procedure will allow him to get the 3 polyps as well as get really good endometrial samples. It should also stop the bleeding; which would be a nice bonus.
It's just the dreaded wait for the biopsy results, again. But of course all of you know that wait much better than I do.
Thank you again for responding to me in the midst of your much bigger stressors.
Dorothy
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soup 52 thank you!
I want to thank all of you so much for caring enough to respond to me.
I think everything went as planned. The doctor said I was on my period so that complicated things a bit. I reminded him that I have been on my period since October.
I have ice packs.
My mouth is so dry, and I feel so nauseous. Hopefully sleep will help.
Thanks again!
Dorothy
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