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Facing radical hysterectomy and possible uterine cancer

smsw
Posts: 5
Joined: Feb 2010

Hi all: Not only am I new to this site but am also not a huge user of discussion boards so forgive me if I don't do everything correctly.

I am a breast cancer survivor (15 years) but am now facing a complete hysterectomy because it seems I have uterine cancer. We aren't sure because the cervical biopsy could not be completed. I am post-menopausal by a long time (which means I'm "old"). So many posts are from much younger women whose issues are different from mine. I'm very active but not concerned about hormones and such. I'm more concerned about what lies ahead even if I don't have to have radiation or chemotherapy. What changes to my life will the surgery itself bring? I hear about problems with bladder and bowel control? Is that common? I read about women being tired? Is that lasting? Any advice/comments would be welcome.

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

I joined this group recently and have found it to be a wealth of information and support.

If you are new to discussion boards just be yourself. Remember you are online so you might want to be elusive to specifics as to where you live, who you are, etc. Otherwise, I have found discussion groups to be great places to make friends, share information and give and get support.

I had to chuckle at your remark on being "old". You sound young at heart to me. I am 60 and had a radical hysterectomy Oct/2009 due to a uterine biopsy that confirmed endometrial cancer. The surgery was not a walk in the park. I made it through with some modifications of my life. Went back to work 2 weeks after surgery. Might have been a little too soon. Didn't drive for 8 weeks post surgery my own choice. Had to be careful lifting things. Constantly reminding myself to take it easy. Cleaned out my purse which weighed 10 lbs. I carry too much junk with me, like I an in survivor mode for a major disaster.

I was having a lot of problems with bladder control prior to surgery. Now there are none. Bladder is fine. I take a stool softener when needed and my bowel control is fine. Had pelvic radiation after surgery, and after the side effects had worn off everything seems to be working.

I am a little tired at times due to receiving chemotherapy right now. I have 5 more weeks of chemo. I rest when I am tired. That is the hardest thing for me since I am usually very active. Allowing myself the luxury of a nap is difficult for me. I feel lazy. Have learned to pamper myself.

Congratulations on being a breast cancer survivor! There is also a breast cancer group here on this site.

Again a warm welcome! I hope this group will be a place for you to find support.
Norma

smsw
Posts: 5
Joined: Feb 2010

I'm heartened by your reply and the minimal complications you had from surgery. Your life and outlook sound similar to mine except that I am 71 -- way past "officially" old. However, I don't feel old in the slightest. I am very active and am lucky enough that my retired husband doesn't mind my being out in the world much of the time, going to meetings, trying to make a difference in our community.

I have no idea what I'm going to face post-surgery since cancer has not even been definitely diagnosed. A gynecologic oncologist will be in the operating room, ready to check the lymph nodes if the frozen section confirms cancer as they think it will. If it is cancer, our hope is that it is primary uterine vs breast and that it is not in the lymph system.

I'm curious about what kind of chemo you are doing and what stage cancer you have. It sounds to me like you are faring quite well and I love your attitude.

Sandie

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

Since you are looking for some "older" gals....I had a radical hysterectomy when I was 65. I had mine done robotically and was home the next day, took a couple of pain pills 2 days and that was it. It was exceptionally easy. Now, if you have yours done the standard way with the abdominal incision, it takes a lot more time to heal, etc. I had no adverse effects from the surgery.

I then had radiation (30 external treatments) and then 5 rounds of chemo. The biggest side effects were fatigue, some intestinal troubles, low blood counts, and neuropathy in my feet.

It is now getting close to 2 years and I am doing great. The neuropathy in my feet remains but I can live with it. It took me about 9 months to really get back "to my old self" but I am there. In fact, I feel better than I have in years!!

So...we are here for you....Just ask away!

Karen

smsw
Posts: 5
Joined: Feb 2010

I can't believe that in just a couple of hours, I have made contact with people who understand and are making it. Thanks so much.

Sandie

Ro10's picture
Ro10
Posts: 1356
Joined: Jan 2009

I am 61 years old and had the robotic surgery last January. I was diagnosed at Stage III-C UPSC. I had 6 chemo and external and internal radiation. I would say I am back to my presurgery level of energy. I never had any symptoms before surgery, and I have no side effects from the chemo or radiation now. It did take months before my energy level was back to normal. I never needed naps or anything, but just felt tired.

Good luck with your surgery and I hope you get good results. It is great news that you are a breast cancer survivor. Take one day at a time. In peace and caring.

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

I had cisplatin weekly for 6 weeks in Nov/Dec after the surgery, and 25 radiation external beam radiation treatments during that chemo regimen. Started taxol/carbol Jan 11. My diagnosis is endomethroid carcinoma FIGO 2 Stage IIIC (due to one lymph node out of 30 removed). I feel great and am doing well. I read the statistics when first diagnosed and then finally decided that I am an individual with a great medical team in my corner. So I am a statistic of one, me, that is it. And I am taking each day as one more day I survive and thrive. Lost my hair last week due to the chemo. I have a flat head!!! It will grow back. I went and bought a bunch of soft knit hats.

Today I am home because it is rainy and dreary in Southeast Texas and I am feeling a little tired. Luckily I am able to work from home when needed. Thanks to computers. Who would have ever thought when we were growing up you could talk to people across the country on a computer? What a wonderful world we live in.

smsw
Posts: 5
Joined: Feb 2010

Hi Norma: When I did chemo for the breast cancer I lost my hair and, to my great surprise, found that I had a rather large birthmark on the back of my head. I asked my mother why she never told me it was there and she said she had forgotten all about it. It made us all laugh.

Thanks for the details. You are right about this great world of computers. To get information about the breast cancer I had to go to the hospital library and try to decipher medical articles meant for physicians. What a difference between 1994 and 2010 in so many ways but especially computer-wise.

It is wonderful that you can work at home.

Sandie

SI
Posts: 21
Joined: Jan 2010

Hi Sandie,
I am new to this site as well, having just found it a short time ago. I am still reading the posts, am learning much, and am really inspired by all of the stories here and the great support that everyone offers so generously.
I am also an "oldie" and had the hysterectomy in November. It was robotic surgery and the recovery was very fast and very easy with only an overnight in the hospital. There was very little pain. As far as I can tell at this fairly early point, I have no problems from the surgery whatsoever.
Many wishes for an easy and very successful surgery!!
Si

kansasgal's picture
kansasgal
Posts: 115
Joined: Aug 2009

Hi, Sandie!

I was 64 last year when I had a total abdominal hysterectomy. I think I was in the hospital 5 days. I experienced quite a lot of pain after I came off the morphine pump because I could not tolerate the oral pain medications. Lots of vomiting. Finally Compazine helped to end the vomiting. I had to stay in the hospital an extra day until the vomiting stopped. At home I spent the first week in a recliner in the living room. Then I graduated to my own bed where I was propped up on a wedge to ease getting out of bed. Either my husband or my daughter was with me almost round the clock for the first couple of weeks. I could not get up or down without help for about 3 weeks. I could not really sit up. My appetite was good. I took no pain medications. I was very tired and slept quite a bit. Gradually the abdominal pain eased. My incision took longer to heal (stop oozing and close completely) than the gyn/onc had anticipated. About 8 weeks. Probably it was 8 weeks before I could really sit up and get around on my own, and about 10 weeks before I could drive a car. By then I had already taken an overnight trip to another state for a second opinion, had a chest catheter inserted, and started chemo. I kept thinking that this was really not for wimps and that I needed to hang on and do my best.

I had 6 rounds of Carboplatin/Taxol chemotherapy and 3 rounds of brachytherapy to the vaginal cuff. A CT in November showed NED (no evidence of disease) and a PAP in early January showed the same. My CA-125 is 6, but I don’t know if this will be a marker for me.

I am still not back to normal in terms of my mental abilities. Physically I still tire easily and am unable to work a full day at the office. I still have a bit of peripheral neuropathy in my feet and have developed plantar fasciitis in one foot from "walking funny" due to the neuropathy. My abdomen feels fine except for some slight pain from adhesions. I still have a small pain in my breast where the catheter tubing came out. I had attributed the pain to scar tissue/adhesions. The tubing was removed in November. I went in for a mammogram a couple days ago. Yesterday I had a call from the mammo center asking about my right breast and I told them I had had a Groshong catheter for a few months. Then my PCP called to tell me that the radiologist feels that the slight pain I am feeling is not scar tissue but rather a half-inch plastic cylinder which failed to come out when the tubing was removed. Great! I am waiting to hear from my gyn/onc’s office.

Maybe you are a candidate for the robotic surgery rather than the long abdominal incision! All the rest of my cancer treatment was a piece of cake physically compared to recovering from the surgery. Please let us know if you have more questions.

Good luck and a big hug!

Sally

SI
Posts: 21
Joined: Jan 2010

Gosh Sally, I was so sorry to hear about your surgery ordeal! The chemo, for me is so very much worse than the surgery. I know that not everyone is a candidate for the robotic surgery, and I nearly did not get it because the insurance refused to cover robotic surgery. However, they approved it at the last minute and am so thankful. I can't imagine having a recovery like yours and then experiencing chemo right away.

When did your neuropathy worsen? Did it occur early in the treatment cycles and worsen in later cycles? I have noticed an increase in numbness and shooting pain in the feet and hands the past few days. I assume the shooting pain is neuropathy, but not sure. With three more cycles to go, I am really hoping it does not incease with each treatment.

I am so amazed at your bravery in having gone through all of this! I hope the removal of the little plastic piece will be a very quick and simple procedure.

Si

kansasgal's picture
kansasgal
Posts: 115
Joined: Aug 2009

Hi, Si

My peripheral neuropathy worsened as my treatment went on. I don't think it started until about the third round of chemo. I experienced a burning pain and tingling in the 3 outer fingers of both hands and the 3 outer toes of both feet plus the balls of my feet. I also had a tingling (no burning) in my lips and the tip of my tongue. My symptoms actually were the worst AFTER my chemo ended - about 2-3 months following my last infusion. Now they are getting better.

Other symptoms were not related to PN - the feeling that heavy weights were strapped to both legs, the need to hold a cup or glass with both hands so as not to drop it, the difficulty with turning a key in a lock, the pain in my joints and my bones, the difficulty with holding a writing implement for more than a few minutes. These symptoms started 3 or 4 days after each infusion right from the initial infusion and lasted about a week. Except for the constant fatigue and mental fogginess, I usually felt pretty good - pain free apart from the healing abdomen - just in time for the next infusion!

I didn't feel brave, just determined to grit my teeth, hang in there, and complete the treatment. I kept saying to myself, "This, too, will pass." I knew other more frail folks had gotten through this, and so would I.

Everyone is different. I hope your peripheral neuropathy does not worsen. I took supplemental B-complex vitamins and folic acid in case they might help. I am still taking them.

A big hug to you for hanging in there, too!

Sally

kansasgal's picture
kansasgal
Posts: 115
Joined: Aug 2009

It turns out that it is not unusual for the small plastic ferrule (a sort of "keeper") to remain inside the body when the rest of the tubing from the Groshong catheter is pulled out. My oncologist's nurse told me the ferrule can be removed (small in-office surgery with local anesthesia). Otherwise it will just remain where it is in my breast and should not cause any trouble. I'm planning to leave well-enough alone for now. If I have another port put in later, I will ask for the plastic ferrule to be removed at the same time. It seems strange to have it in there (I thought it was a wad of scar tissue) but it doesn't really hurt. When I sleep on my stomach I sometimes think I am lying on a bead and just change positions a little bit to be more comfortable.

kelleyl29
Posts: 1
Joined: Oct 2009

Hi. I am new to this site so if I make mistakes please excuse them. I had breast cancer in 1981, got divorceed then remarried a remarkable man in 1987 to only get breast cancer again in 1991. All was good until Mike was diagnosed in December 23, 2005 with colon cancer. He passed in August 2006. Then in January 2008 I was diagnosed with Uterine cancer. I went through 6 weeks of radiation which to me was a breeze. Then in December 2009 I was told there was cancer in my lungs. Only it wasn't lung cancer. From the biopsy the cancer had the characteristics of the uterine cancer so that is the way it is being treated. I found the radiation the easy part. Now I am doing chemo and it's been the hardest thing I've every done. Don't know if it's the meds or my body is older and not in as good of shape as it was in 1981/1991. Good luck and maybe you can get some good information and support from these web sites. I consider myself a tough ole girl but everyone needs someone to lean on.
Linda

starlight22960
Posts: 2
Joined: Feb 2010

Hi,
I am also new to this site. I had a polyp removed aug 2008 and a d&c which the gyn said was fine. I was supposed to go back for a checkup I think fev 2009 but I didnt. My sister was battling breast cancer stage ll and I was really the only one who could stay with her during chemo. She has such a rough time of it. I spent alot of time going back and forth. She lives about 2 hours away.
Anyway in aug-sept 2009 I started having some spotting. I thought I was going through menopause since I turned 50 in November. Then I started getting more pain on my left side. I have scar tissue and have always had some pain on the left side. But it did increase. So I told my husband I thought maybe something is wrong. So I went to the gyn and he did another byopsi of the lining and a pap.
I got the call on Feb 8. Cancer. I don't know staging or if its even a growth or just cells. But he told me he felt we had caught it early. Since he did the byopsi (forgive spelling brain is stressed) I have had no spotting at all.

I go the the gyn oncologist today at 2. I am so scared, I feel sick to my stomach. I don't know if it is in the early stage or not. the waiting is getting to me
thanks for listening
Jami

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

Take a deep breathe, we all here know exactly how you are feeling. It's soooo hard to hear the word cancer and trying to take in all that is happening. You have come to the right place for support. There are many amazing women here who have been through what you are about to.

God Bless and I'll be praying for you that it is early stage...

MIND, BODY AND SOUL!

Hugs,

Marge

Cloud_Lover's picture
Cloud_Lover
Posts: 20
Joined: Dec 2009

Hi,

I'm new to this group too. I had a full hysterectomy Oct 26th with a long incision. It helped me to walk the halls in the hospital ASAP. I had to stay 5 days until my bowels were working again, but my recovery was rapid. Two days after coming home, I was off the pain meds. I used a walker for support for the first week, a belly incision takes longer to heal.

I'm starting my chemo Feb 22nd so I'll be going into a new experience as well. Your attitude sounds positive, they say attitude and faith make the difference in recovery. Hugs to you, Ruth

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