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Aloha UPSC survivors

livenow09's picture
livenow09
Posts: 63
Joined: Apr 2009

Glad to have found you all; diagnosed in May 08 with UPSC stage 1A; I was lucky and very blessed to find this killer early; all I noticed was some unusual moisture in the vagina during intercourse (this is NOT normal for a post menopausal woman); my further investigation of this change included a clear, odorless, sticky discharge for about 3-4 weeks; I made an appointment with my PCP for a vaginal exam because these symptoms were troubling (I'm an RN and notice too much stuff); needless to say the PCP scoffed at me; said it was probably stress incontinence; I demanded a thorough exam and low and behold there was a little blood in the uterus; the rest is history; was given the diagnosis by a very caring OB/GYN who immediately had a plan to send me to a gyno/oncologist; his view was we had "only one chance to get this right"; in just a short time the cells had morphed to Grade 3 already; if I had waited the prognosis would not have been so good;
it gives me comfort to read your stories because I know I'm not alone; it seems to me that there is lots of support during surgery and chemo (8 cycles; no radiation; CA 125= 11 at this time) but after you're on your own; where's the aftercare; plagued with neuropathy which oncologist denies is chemo related; he along with the PCP are on their way off my treatment team; is anyone else having problems finding information/support for aftercare; on other cancer websites it seems we're all talking about the same thing...when do I get my life back; I'm alive but not living...still too tired to do as much as I'm use to; colleagues at work are very supportive with my working only part time; my brain is not as sharp and I could go on and on about how completely different I am...I'm just not me anymore..not physically, emotionally or mentally; my spirit is strong and I know I will prevail; psychotherapy has been extremely helpful in helping me through what is to me a grieving process...I've lost my life as I knew it and had planned it and am working through where do I go from here; be glad to hear from any and all Aloha Livenow09

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

I would never have known to act on those symptoms! How incredibly fortunate that you did!! When I look back, perhaps that knowledge could have tipped me off earlier. (MY UPSC was caught during a routine PAP test, and was already Stage III-c). I never had a discharge, but I didn't need lubrication either, which I looked on as a blessing and maybe should have questioned at a post-menopausal 55 years old. You are the first woman I have read of who has pro-actively had her UPSC diagnosed so early! In all the other Stage 1 UPSC stories I've heard, the women had been experiencing other unrelated complicating conditions that called for a D&C or hysterectomy, and the UPSC was found by surprise in the resulting pathology. Congratulations on your alertness and educated premonition. You can take that incredible strength and determination that evidences, and build yourself a NEW life that is even better than the other, neuopathy or not, enriched by your hard-earned wisdom.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Welcome Aloha,

I was diagnosed in 9/08, stage 3a, 6 rounds of chemo and CA125 of 8, in surveillance now. It's curious that your gyn/onc is pulling away from you (if I understand correctly). I would encourage you to advocate to stay connected with him/her ongoing.

I think you are smart to get therapy and I agree that this is a GRIEVING process. There is no right or wrongs in this grieving process. We all experience it differently. We definitely have lost something.

I found that on the journey I have also gained alot - and I'm thankful for that. I've added a lot of meditation and soul-nourishing activities and take better care of myself. On Friday I went to a meditation session given at my cancer center. the activity involved looking up meaningful quotations from a myriad of books. One that immediately spoke to me said "Some people are troubled that roses have thorns. I'm grateful that thorns have roses."

I hope you can find relief from the burdens you have.

God Bless You. Mary Ann

shortmarge's picture
shortmarge
Posts: 295
Joined: Nov 2008

I am stage IIA UPSC and clear cell carcinoma. I went to my regular doctor not feeling well, to make a long story short she sent me to get a CT scan which then sent me to an ob/gyn. They did a internal ultrasound and found some things but he looked me straight in the eye and told me he didn't think this was an ob/gyn problem. I pressured him and asked questions as to why I would have my period every 18 days, that's when he asked me if I wanted to do a biospy. Of course I said yes. I can still see him apologizing to me when he was telling me I had cancer.

My OB/GYN oncologist also says that most of my problems are not from the chemo (hahahaha). Funny to me because there are a lot of women on this sight that have the same side effects. I find that most of my support comes from these amazing women on this website and I am so glad that you found us. Take lots of vitamin B's for the neuropathy. Mine is finally going away. I had it in my face, my mouth and my feet.

I was also having major pain in my hips and went and got a message. Ohhhhhh how wonderful that was and plan on getting one every month. I'm thinking the chemo effects the muscles for a long time. It's been three and half months since my last treatment but my hands swell and my muscles get really stiff. Ben Gay is one of my best friends! Oh and I'm am having problems with memory. I told my husband the other day that I feel the chemo effected a certain part of my brain and it is very, very frustrating. So as far as getting your life back, I believe this is the new life and I am embracing it for all it's worth, even with the pain and the memory problems.

MIND, BODY AND SOUL!!!!

Hugs.

deanna14
Posts: 733
Joined: Oct 2008

Marge, thank you for sharing your neuropathy symptoms! You may have posted them before, but you just made me feel so much better. I have been having neuropathy of course in my hands, arms, feet and legs, but also in my face. Particularly in my lips and the tip of my tongue. I described it to my doctor as the same sensation that I feel in my toes and fingers. He told me he didn't know what that was, but that it was NOT related to the chemo, and it was NOT neuropathy. Makes you think you are paranoid or just overly sensitive... or crazy. Reading your post that you too have it in your face and mouth makes me feel like I'm not nuts. Why do these doctors say "it's not the chemo or it's not the radiation." Let's see... I mysteriously have this strange sensation in my mouth after starting chemo, but it's not caused by the chemo?!!! Has he ever taken chemo? What does he know, anyway!!?? My doctor just frustrates me!

livenow09's picture
livenow09
Posts: 63
Joined: Apr 2009

you're so fortunate to have a cancer center close by; there is nothing on the Big Island; I had to fly to Oahu for treatment; I'm sure my dr does not feel he is pulling away; he just doesn't understand why I'm no longer docile; I don't think he gets the grieving part..especially the loss of my prior vaginal function; the surgery changed the shape of my vagina and it's not as pleasurable as before; I've always had a hearty sex life with my husband of 30+ years; one of this dr's residents shared that NO ONE had even talked about sex with him in the time she worked with him; pretty amazing...

Marie

Ro10's picture
Ro10
Posts: 1362
Joined: Jan 2009

Sorry you are on the same journey that we are on. You are lucky you had some symptoms and acted on them. You are lucky they caught it at Stage 1. I had no symptoms and after surgery was Stage III-C. I too am surprised that you gyn/onocologist is releasing you. Mine said I would need follow-up every 3 months after treatment is completed. My onocologist also told me neuropathy could be a problem with the chemo, and to report if I had any signs of it. Luckily I have not had any signs of it yet. I have had three chemo and 17 external radiation treatments so far. I am glad your spirit is strong. You will have a "new life" with all your differences. May you be able to celebrate your "new life", each day. You said you were too tired to do what you used to. Use your energy to do what you enjoy now. I too notice that I am not as sharp as I was before. I blame it on "chemo brain". I hope it gets better when my treatment is finished. I too am an RN, and my husband says he is glad I am not working because I am not as sharp as I was before. I know I don't have the energy to work 12 hours anymore. But I try to enjoy each day and do the things I enjoy and spend the day with people I enjoy being with. Keep up your strong spirits and take it a day at a time. HUGS to you.

cookie1948
Posts: 79
Joined: Feb 2009

Hi there,
I am sorry you've had such a difficult journey. I hope things get better for you very soon.
I noticed you mentioned you had stage 1a. That is what my mom had staged march 12th 09 and had hysterectomy at 85 yrs old. She is doing well, but had no chemo or radiation. Now i'm wondering if i should have pushed for some treatment. The gyn/oncologist said there were no proven studies that proved treatment would help with 1a, but u said it went to 3? Well, maybe they didn't push chemo due to her age, but now i am concerned. She is doing quite well, and i know there are no guarantees and i was leery of pushing for chemo at 1a and making her ill.
Not sure what to do now. Should i ask at her 3 month check up ? or maybe i should just drop it, as what if i push and it makes her feel sicker. She is just now healing from that big surgery.
Thanks and God Bless you!!
Cookie

livenow09's picture
livenow09
Posts: 63
Joined: Apr 2009

Aloha Cookie my cancer was stage @ 1 A but the cells were a Grade 3; the grade is determined by the content of the cell and how human it looks; grade 3 doesn't look too human; there are many studies about recurrence of UPSC; my gyn/onc recommended the chemo as "insurance" against recurrence; no chemo for your Mom may have been more related to age and ability to withstand the rigors of treatment; hope she does well; ask at the three month check up; her CA 125 should be monitored along that same frequency, every 3 months x 4, then every 6 months etc

cookie1948
Posts: 79
Joined: Feb 2009

The dr didn't tell us what grade the cells were, he just said it was 1a and from everything they could tell there was no evidence of spread, but who knows? i know this is an aggressive cancer. Her CA 125 was 15 before surgery, don't know what it is now. I'll sure try to ask when we go again, altho i am sure he'll just give me this look, "like what?" He said she has many more years to live. well, i would hope he'd be honest with me and tell us the truth. I know no one knows the future, but i didn't know i should have asked about grade of cells.
Thanks so much for your explanation. I hope you do well and continue to improve with each passing day. You are in a beautiful place where u live it looks like. I have never been to anywhere near Hawaii. I just hear it's wonderful. Have u always lived there? Take care and God Bless you and i hope to hear of your progress and for you to be NED very soon.
Cookie
My husband loves warm or hot weather and i love cool and colder weather. We live in California, and i yearn to live in the colder climates..........we're not moving anywhere though. My mom has me right next door and i would never leave her.

livenow09's picture
livenow09
Posts: 63
Joined: Apr 2009

it sounds reasonable to me that your Mom wouldn't need chemo if her CA 125 was 15 BEFORE surgery; ongoing surveillance of the CA 125 will tell; if it stays in the normal range and doesn't go up very much, she'll be ok; most oncologists follow protocols based om clinic trials; the grade of the cells would be on the biopsy report; it's so important to have trust in your treatment team; I believe they do their best but sometimes medical personnel become jaded; they've seen this same situation numerous times; but they forget that it's the FIRST time for you and your family; try being part of the profession; it's even harder; sometimes they expect you to take care of yourself and know everything already;

we moved to Hawaii 6.5 years ago; just thought it might be nice to live in paradise for awhile; we have "gypsy" blood and like to move around a lot; this is why my current situation is so difficult; I feel the urge to "go" again but can't because of the uncertainty of keeping health insurance and not being able to just easily find another nursing job; I'm working on a plan to take short trips to far away places; we may even move to CA as our two daughters live there and it might be nice to be close; they love to come to visit however and are not sure we should move

Livenow09

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