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Cervical Cancer after a hysterectomy

Aileene
Posts: 3
Joined: Mar 2011

Wow where to begin: 1997 lung carcinoid-resected, 2001 thyroid carcinoma-resected, 2007 hysterectomy but not for malignant reasons, then in 2010 I started to notice bleeding after intercourse, long story short I was diagnosed with cervical cancer, resected in Nov 2010, and was told all 33 lymph nodes were negative, so they got it all, I was lucky again!! Now they are saying because of the prior hysterectomy, the surgical area was disturbed so they can't say 100% sure they have it all so they (received a 2nd opinioin as I say I'm getting pretty good at this now) are recommending chemo and radiation (I start on Wed). My question is, is there anyone out there with cervical cancer after a hysterectomy???? I'm 44 years old healthy as can be, active with two kids, go to the gym 5 days a week (3 of those for Zumba, coach softball, play softball, I'm what you would call "super mom"). I don't smoke, barely drink, if you saw me you would never know I'm now a 3 time cancer survivor (except for all the scars lol!!). But I am scared this time I'm good at surgery but this is my first time wich chemo and radiation.

beckyracn's picture
beckyracn
Posts: 324
Joined: May 2009

I've the chemo and radiation, but when they went in to do the rad. hyster. they found the mets of ca...so I came out of surgery with only lymph nodes removed. Sorry your having to go through all this yet again. Any questions...just ask.

Aileene
Posts: 3
Joined: Mar 2011

Thank you for your response, I'm just trying to find some research on this rare situation most people remove everything during a hysterectomy but I got talked into leaving the cervix for pelvic support. That sure was the wrong decision uuurrrggggg!!!!

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beckyracn
Posts: 324
Joined: May 2009

I've talked with several women who have had the cervix removed, and their ca returned to the uterine walls or mets to other parts of the body; still cervical ca. I guess it's going to grow were it wants to, when it wants to, with or without the organ. I can undrstand your frustration. Good luck on your research.

kelly33
Posts: 3
Joined: Mar 2011

Aileene, wow you are a survivor. I was diagnosed with stage 2a cervical cancer in Jan.09. My surgeon at Hopkins attempted a hysterectomy but lymph nodes were positive and tumor was too large. He only took out a Fallopian tube and ovary. I then had to do radiation and chemo. Radiation is tough on the body. You are very tired and have some nausea although everyone is different. The chemo is low-grade so it isn't so bad. I had a recurrence and now am receiving high doses of chemo and this is much harder on the body. My surgeon at johns Hopkins told me he would not go back in and do a hysterectomy(before recurrence). He said when you take everything out sometimes that can lead to the cancer coming back. If you didn't have previous signs of dysplasia, then it is hard for them to know. However, if you had irregular paps in the past, then you might want to look into a potential lawsuit with that doc who left your cervix in. I wish you luck with your treatments.

Aileene
Posts: 3
Joined: Mar 2011

I've never had abnormal paps, and the first sign of dysplasia was before the surgery in Nov. 2010. Even the leep biopsy came back pre-cancer/dysplasia. My surgeon on a gut instinct did a cone biopsy instead of stump removal, the cone came back CC, so that gut reaction probably saved my life, it would have been hard to do a stump removal (instead of the cone) then turn around and do the lymph resection. So he was able to do the stump removal with the lymph nodes at the same time. I do wonder about the pathology on that hysterectomy from 2007, none of it adds up to me.

Noelp
Posts: 1
Joined: May 2011

Hi Aileene,
I had a supra cervical (cervical sparring) hysterectomy 4years ago. I was just diagnosed with cervical cancer. The tumor is 2.5cm and there is some lymph node involvement. I start Chemo and radiation on Wednesday.

Needless to say I am freaked out most of the time.

How did everything work out for you?

Penny

Stage4a_13
Posts: 1
Joined: Aug 2011

Hi Aileene,
Sounds like you had quite the journey. I was originally told after my hysterectomy that cancer (SQUAMOSA) was found in the cervix.( which was removed during my hysterectomy). At first conversation with the oncologist all he kept telling us was that I needed a radical hysterectomy. My husband and I could not get him to understand that I just had that surgery. So we got a second opinion, who never followed up on the initial visit. That was in Oct 2009. I thought it was all a misunderstanding, until I has my ovaries removed due to endometrial scarring and tissue build up. this was arpil 2011, After that operation my OBGYN took biopsies due to abnormal bleeding. They can back precancerous. I was sent for a PETscan, as none of the blood or CT scans showed anything ab normal. I was diagnosed with stage 4a cervical cancer. I was floored. How can I have cervical cancer with no cervix??!!! We finally spoke a Dr, who explained that the cells left behind after surgery/removal will grow in to anything close. I have invasion of the vaginal, uterine, lower bowel and 1 pelvic lymph node. Nothing in any of my distant organs. liver lung bone are all clear. I went through 7 once a week treatments of cysplatin, 5 and 1/2 weeks of external radiation and thus far one HORRIBLE treatment of internal radiation needle brachytherapy . I am told it was only bad because the Dr. was not managing my pain properly. (he removed all 20 needles and template sans sedation or pain meds by just yanking them out) I too have had lasting tingling, nausea and headaches since the chemo stopped. I am one week from the surgery above and having high fever issues. I feel very weak and I know it is froom fighting the damage done internally by the radiation. I do not know my outcome as yet, I called that Dr. and told him I would not do the second surgery. I followed that with a call to city of hope and have an appt on Sept 12. I am hoping to have anyone give me some good news. The chemo and external radiation were a cake walk compared to the internal. I wish only the best for you.

Pammy8888
Posts: 1
Joined: Nov 2011

Oh dear..... we are all suffering aren't we.
I had a radical hysterectomy 2 1/2 years ago and hoped that was the ned of it all, but no. To cut a very long story short, I suffered a split ureter then a recurrence so had radio/chemtheraoy Jan/Feb of this year (2011) and seemed to come out of that ok. However I am now fearing I have yet another recurrence. I am awaiting an MRI scan.
Like some of you I was a fit healthy person with no symptoms and felt good. How can this all be happening? What awaits a 2nd recurrence? Not good news I should think.
Those of you with husbands and partners are lucky though as I am divorced and my sister has disowned me.
Would love to be in touch with you ladies
Pam

Amywco
Posts: 1
Joined: Mar 2012

I was 24 and diagnosed with invasive cervical cancer after a cone biopsy. My cancer was "weird" according to the doctors. My age, my negative HPV test, my tumor grew across my cervix and not deep into my cervix and the fact that my tumor was made of up corkscrew typed cells, which apparently are not "normal cancer cells". As if anything about cancer is normal. Because the depth was so minimal they put off a hysterectomy and instead followed me very closely.
I had my second son a two years later and kept going in for tests. My cancer re-occured in 2000 and I had a hysertectomy.
This month I had a follow up exam with a different doctor and my pap came back abnormal. the doctor is saying I can wait a whole year to follow up and its scaring me to death. I think a year is too long. Im a single mom. Does anyone have any ideas if im over-reacting?

I emailed my old doc to get his input. Im almost ready to fly back to CA to see him just to get soem peace of mind.

astgermain
Posts: 2
Joined: Mar 2012

I would never wait. I would go to a gyno for a second opinion and get the ball rolling. I have never heard of waiting for a year for a repap after an abnormal result...then with a history on top of that, I don't think so!

TKRash
Posts: 2
Joined: Apr 2016

I am 48 years old when I was 24 I had a total hysterectomy I had one ovary removed during an emergency surgery (age 21) during my C-section the ovary ruptured and I nearly bled to death so it was removed. a couple of years later I had 3 different surgeries to remove endometriosis, it was everywhere inside me ovary, kidneys, stomach, liver, everywhere! That didn’t get rid of it and at 24 it became so bad that I almost bleed to death in my doctor’s office while he was on the phone with my insurance company trying to get them to approve the surgery. I was taken to the hospital by ambulance and had an emergency hysterectomy removing everything and cleaning out my insides as best they could. I thought it was all over, I went through menopause the entire 9 yards of the hot flash HELL. I had several test during the years since to check hormones levels and such and also many many abdominal ultrasounds for various reasons and none of them showed any ovaries. Then one day 2 weeks after having an ultrasound that showed NO ovary’s I started having pain and swelling in my abdomen so I was sent to the ER for another ultrasound and there full formed was an ovary which pretty much freeked out everyone. It had grown in less than 2 weeks. I was sent to an OBGYN to have test ran and to set up to have it removed because everyone said it had to be cancerous. When I went in for the test they did a pelvic check and PAP and relied that part of my cervix had also started growing back and my pap came back abnormal. Well, they did the surgery and removed the ovary and all the other things that were growing back and when I went in for my post op check they told me that the pap had come back saying there was cancer present and so they did a bunch of other tests and biopsies and I was told I had a very rare form of virginal cancer, the doctor told that only 15 people in the world have been diagnosed with it, but for me not to panic that it was a very very slow growing cancer and I probably not need any treatment for at least 10 years. I would be following up every 6 months to make sure there were no changes. My 2nd follow up I get a letter stating that he no longer excepted my insurance and I had to find another OBGYN. I did so and this doctor told me that there was no such thing as the cancer he told me I had and that under no circumstances does ovaries or cervix or anything grow back after a hysterectomy and that the doctor I had was full of it, her words. Now I don’t know what to do. It’s been 3 years since I have been seen and I am having problems but I don’t know where to turn now. Please help me if you have had anything like this or know what I should do. I should also say that I have several autoimmune illnesses and take 2 different types of chemo for them along with many other medication.

jlkone
Posts: 3
Joined: Jul 2016

9 years ago my gynecologist tested and said zero stage cancer in situ I opted to have everything removed.  No problems never diagnosed with cancer just precancer.  Last July (7-23-15) I was diagnosed with secondary peritoneal carcinomotosis terminal.  I have made it for the last year(the media shows average life from diagnosis 3 to 4 months) always wordering how I got a disease secondary to a disease I did not have....After much research, laproscopic surgery may have been the villian as the tool used grinds up the organs to make them small enough to fit thru the small incisisions if 1 cell came loose it landed in the area between organs and skin called the peritoneum.  I have been optimistic and handling the taxol, carboplatin, avastin regimen well however, just ct scanned and the combo has stopped working the tumors are growing and invading my organs.  There is not a cure I have a great life and loving friends and family this just seems so unfair.  Cervical cancer without a cervix yes possible and cervical cancer not even in the cervical area possible, cure impossible....very rare very deadly, just told we will try a drug that has maybe a 20% chance of working and then it is on to a hospice.  I don't know whether to be sad, glad I lasted this long or just pissed because I am so not ready to let go.

 

ccfighter
Posts: 476
Joined: Jan 2012

Jlkone,

im sorry you have had this experience.  It seems so unfair.  You sound like you've been fighting a good fight and beating the odds.  Keep fighting.  I hope the next chemo helps.  Consider IP chemo and clinical trials.  Best of luck and health to you.  Hugs.

jlkone
Posts: 3
Joined: Jul 2016

Thanks for the "hugs".  IP or any surgery is not available to me due to this type being from squamous (cervical) cells.  I am scheduling a second opinion from MD Anderson, hopefully, I can hear something positive from them.  Wish me luck, I'm game for almost anything other than the "final resolution"  Starting to feel the symptoms that sent me in for diagnosis a year ago, so time is to the essence.

ccfighter
Posts: 476
Joined: Jan 2012

Definitely best of luck to you.  You can get through this.  Hopefully MD Anderson will have some great ideas.  Keep us posted.  Hugs.

flyingpig28
Posts: 1
Joined: Sep 2016

Best wishes to you. Stay positive!

jclough
Posts: 1
Joined: Sep 2016

6 years ago i had a hysterectomy with my ovaries left in this was done after a smear coming back CIN3 and constant heavy bleeding after my 3rd child they even tried putting me through early menopause to try and stop the bleeding but it didn't work. i though having this done i would be gyne free and no more problems, but i was wrong. i am now back there i started spotting not much and not regular, but my abdominal pain was getting worse. after a colonoscopy and mri because the doctors would not listen to me that the problem was gyne not bowels i was sent to gyne ultrasounds were done and they came back with cyst on my ovaries and they decided to give me a laparoscopy this was done last friday after i came around i found they have taken 1 ovary because it was twisted and it had to be sent off for testing. while in there they opened some scar tissue to make me more comfy but also found nodule abnormality at the top of my vault and more tests are needed. 5 days im back in for another ultra sound, which has shown a mass but they are unsure where it is connected to me other than it is on my left side which i could of told them as i feel it every time i sit down or move certain ways. i now have to wait for another appointment for a colposcopy. is this all normal and could it be nothing and im just reading to much into everything that happening ? i realise that i have not been diagnosed, but i have got know clue on where i am meant to turn to for imfomation as there is not much out there infomation wise after a hystorectomy and doctors tend not to be very helpful untill the time comes but i need somthing before that. i care for my husband and daughter and have another 2 childern and trying to stay strong and have a happy face 24/7.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 1868
Joined: Mar 2013

jc, I am sorry no one responded to you.  I am sorry to hear that no one listened to you when you said it was gynecologic issues, it sounds like you need to deal with a gyn not a regular doctor.  Waiting is the hardest part and it is OK to be afraid.  

Please let us know how it all goes and maybe some of the other ladies can provide some information. 

DrienneB's picture
DrienneB
Posts: 182
Joined: Aug 2013

J,

Please do everything YOU can to get doctors who will do everything THEY can to help you. If it means getting to a university/teaching hospital, try to do that. I have had similarly bad experiences of having my uterine cancer symptoms written off (including but not limited to severe pelvic pain that was labelled as gastrointestinal), and I am so sorry I did not seek other opinions.

Hoping they get to the bottom of things and that if needed, you have expert surgical care.

-jane

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