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Newly diagnosed cervical cancer adenocarcinoma

LarryCaryn
Posts: 5
Joined: Sep 2004

I am newly diagnosed with cervical cancer and it is adenocarcinoma. Cone biopsy shows 6.11 mm x 11mm, therefore I think a stage IB? I am searching for IB, or similar, survivors to tell me about their treatment experience, results, side effects, etc. I am 51, so not worried about having additional children. I am looking for all my treatment options, so your (survivors) experience is critical. My doctor is suggesting a radical and removing everything including some 36 lymph nodes.

SharonEL's picture
SharonEL
Posts: 21
Joined: Jun 2003

Hi!

I am sorry you are going through this. While the American Cancer Society is a wonderful organization, you may get more response at a site called Hystersisters. www.hystersisters.com There is a forum called Cancer Concerns where many women with Gynecological Cancers "talk" to each other.

I am a vaginal cancer survivor. I have found that site to be invaluable. Good luck with your treatment. Stage 1B is very, very treatable. :)

Sharon

nkern's picture
nkern
Posts: 37
Joined: Apr 2003

I was diagnosed with adenocarcinoma in February of 2003. I had a radical hysterectomy in May of 2003 with 31 lymphnodes removed. 1 of 31 had cancer. So far I have been very fortunate. I would say that my physical side effects thus far have been minimal. I have to make sure that I don't do too much physical activity because my lymph nodes in my groin get sore and if I get a cold or sinus infection, the lymph nodes from my chest up get slightly inflammed. I did not have follow up radiation or chemo as the cancer was encapsulated in the one node. Like I said I have been very blessed thus far. Everything that I read prior to my surgery said how aggressive adenocarcinoma is and so I wanted to be just as aggressive. We did decide not to do the follow-up chemo because of the encapsulation. This is a tough choice, if you have any question please feel free to contact me by replying on this site or email me at nik49@hotmail.com . Good luck and God Bless.

princess33
Posts: 5
Joined: Aug 2004

Hi, I was diagnosed with cervical cancer in 2000 and it is squamous carcinoma, not real sure what the difference between the 2 are,but mine was 9mmx9.5mm nad they said mine was stage 1b2. they said mine was confined just to the cervix,but was so bulky that they couldn't do any surgery on me. They decided to do just radiation and chemo. I had 5 weeks of radiation and 2 radiation implants. They said they had gotten it all and my chances of it coming back were slim to none, but 18 months later it was back and it was on my spine and pressing on my siatic nerve making it immpossible for me to walk. I did 2 weeks of radiation and was on chemo over ayear. The cancer was once again gone. A few months later I developed abad cough, but the doctors treated it like a cold, but in jan of this year they found that the cancer was back and it was on my right lung. I did three weeks of radiation. They can't give me anymore radiation,I've done had all the radiation can ever have, but as for now the cancer is still gone, but I still have a very bad cough and alot of phegm. I'm waiting to see a pulmonologist now to see if there is something else going on. But, I am 33 years old and the side effects of the 1st radiation and implants I had has sent me into menopause, not that i am complaining. I have one child he is 14 now, but he was born premature and weighed only 2 lbs and 10 ounces and was 15 1/2 inches long, but he now weighs as much as I do 145 lbs. So, I am very blessed. I was told 2 years ago that my survival rate was less than 10% for 6 months, but I am still here. It's been a long hard road. The chemo that I took didn't really make me sick, it just made me tired and I ate alot,but I did have a hard time with the radiation. Just remember side effects are different for everyone. I hope my story isn't too depressing for you. I am still here despite the odds, my doctors have told me that they are really surprised that I am doing as well as i have. despite the cough and all the phlegm, I am pretty healthy.

WendyKay's picture
WendyKay
Posts: 19
Joined: Jan 2011

I found out I had stage 3b cervical cancer and it is squamous carcinoma. I found out on a Tuesday and had 28 lymph nodes taken out the next Monday. I had 50 some radiation treatments and 5 chemo (with cisplatin) and when that was done I had to have 5 internal radiation treatments. I am now all done with everything and I find out on Feb. 14th 2011 if this was all worth it.

But I did not get sick from chemo (it made me feel great) it was the radiation that kicked me in the butt.

If anyone wants to talk about the treatments just let me know. I know we are all stronger then we ever thought we were.

rvogel
Posts: 1
Joined: Dec 2004

HI , ON SEPT 12 -01 I WAS DIAGNOSED WITH STAGE 1B ADNEOCARCNOMA OF THE CERVIX. ALTHOUGH I CANT REMEMBER THE SIZE OF THE TUMOR EXACTLY, I KNOW THE DR TOLD ME THAT IF IT HAD BEEN ANY BIGGER I WOULD HAVE HAD TO HAVE HAD RADIATION FIRST TO SHRINK THE TUMOR BEFORE I HAD SURGERY. THANK GOD FOR SMALL FAVORS, I HAD A RADICAL HYSTERECTOMY AND HAD MY OVARIES REMOVED AS WELL. MY CANCER WAS WRITTEN INVASIVE AS THE BASEMENT MEMBRANE HAD BEEN PENETRATED , WHICH MEANT THERE HAD BEEN ACCESS TO MY BLOOD STREAM , BUT SO FAR THE CHEST X RAYS HAVE COME BACK NEGATIVE FOR CA METS. I HAVE PAP SMEARS NOW EVERY 6 MONTHS, AND AT THE END OF MY 5TH YEAR IT WILL BE ONCE A YEAR AS USUAL WITH I THINK YEARLY CHEST X RAYS. I DID NOT HAVE ANY CHEMO OR RADIATION , UNLESS THERE IS A RECURRENCE. THAT WAS THE CHOICE OF MINE AND THE DR.S. I WAS 35 YEARS OLD THEN AND HAD JUST HAD MY TUBES TIED THE YEAR BEFORE BECAUSE I HADNT GOTTEN PREGNANT IN 11 YEARS AFTER MY YOUNGEST CHILD. I WOULD BE HAPPY TO ANSWER BACK IF YOU HAVE ANY SPECIFIC QUESTIONS , YOU CAN CONTACT ME AT redrobin_66@hotmail.com GOD BLESS YOU

julie13
Posts: 1
Joined: Jan 2005

In Mar of 2002 i was diagnosed witht the adenocarcinoma. I had a radical hys and chemo and radiation. Please let me know how you are doing. Anyone with questions or just want to talk. email my at juliewagner@fmivalve.com. I would love to chat

chukker
Posts: 3
Joined: Aug 2010

I'm coming to this page years after it was first active, but I thought I'd throw my hat in the ring for those recently diagnosed with cervical cancer.
My diagnosis is similar to princess33. "... squamous [cell] carcinoma, . . . [and] they said mine was stage 1b2. . . .,but was so bulky that they couldn't do any surgery on me." (I hope and pray princess33 is still kicking out there somewhere after all her complications.)
I went to a highly-recommended oncologist in our area with an excellent reputation. He is aggresssive in his approach - too aggressive for some who like one-size-fits-all care - but his waiting room is filled with the healthiest cancer patients I'd ever seen (many who have Stage 4 ovarian cancer yet have survived for a looong time under his care).
My tumor was inoperable due to its size, so he put me on high doses of chemo - no radiation. He said he doesn't like to put women on radiation (I can't remember why). The chemo was Taxol and Cisplatin followed by a shot of Neulasta within 24 hours to keep up my blood count. I got to choose if I wanted a PICC line or a port on my chest; I chose the PICC line. I had three sessions - all day - with two weeks between each session. I lost my hair on the 17th day or so. There was a 66% chance the tumor would shrink and it did.
Exploratory tests revealed that the cancer hadn't spread to my bladder, lungs, colon, but my pelvic lymph nodes were shown to be enlarged in my MRI so it was determined they had to go. The surgery was scheduled for a radical hysterectomy with removal of pelvic lymph nodes on 28Jan10. All went well. I had a VERTICAL incision, not horizontal, because the doctor said that healing time, etc. was far less and better.
Pain was minimal after the surgery - most of it came from the abdominal catheter. The pathology reports were clean for all tissue removed, including my lymph nodes. I needed no further chemo or radiation. In my follow up visit with my oncologist a few days later, he pulled my PICC line to prove to me I was done with chemo.
Another friend had a regular hysterectomy for fibroids two weeks prior to mine and she had a horizontal incision and STILL has tenderness, numbness, etc. in her abdomen and is still not feeling healed. I ran a 5K in early April - two weeks after having my abdominal catheter removed - and I came in third. My doctor was proven to be right although my friend will argue with me. I have an ugly scar which won't appeal to those who focus on those things, but I've been jumping around for months while my friend is still in recovery.
My doctor was/is key to the success of my ordeal. He was/is concerned with my entire being, not just performing the surgery. He doesn't compartmentalize care; he regularly evaluated my vitamins, my chemo drugs, and provided a nutritionist. He was extremely involved in my treatment from "soup to nuts." He is a Godsend to every woman who is in his able care and who have had their lives extended or restored. I thank God for doctors like him who have dedicated their lives to helping cancer patients continue to live full lives.
I had a second opinion before my surgery at one of the best cancer centers in NYC. They raised their eyebrows at my doctors aggressive approach as they seemed to have standard operating procedures. The doctor there would not have been involved with anything else in my treatment except for the surgery. Chemo was handled by someone else, he didn't give a hang what vitamins I was on. He said that my doctor's approach was still in the research phase there!
For me, I didn't want to have a template applied to my illness - I wanted treatment tailored to me and my needs. I got that and more.
Now, I don't know where I'll be in a year or two years. Perhaps the cancer will come back like it did for princess33. All's I know is that I got the best treatment and my life and current quality of life are proof.
An added note: Thanks to the American Cancer Society I had the pleasure of attending one of their Look Good Feel Better classes at my local hospital before I lost all my hair. It was informative and fun for all the ladies in attendance. (They teach you how to put on makeup when you're going through chemo: drawing on eyebrows properly, eyeliner so it looks like you have lashes, wigs, headscarves, etc.) Call your hospital and see if there's one near you; it's well worth it.
Lastly, I kept my eyes on my Master, Jesus. If He cares about the sparrow, how much more does He care about me?

Seeking Answers
Posts: 2
Joined: Nov 2010

In December of 2009, I was told by my nurse's doctor over the phone that carcinoma cells were present in my recent pap and that I needed to come in for surgery. I went in on Jan 8 and had a cone performed. I was diagnosed as having adenocarcinoma in situ. I never saw my docotor except right before I went into the operating room and he told me based on pathology that I would eventually need a hystercomy possible in the next 10 years. At this time, I am 30 years old, not married no kids but dream and long every day for them. I got a call from the doc's nurse about 3 days after surgery telling me that it was adenocarinoma in situ and that I needed to come back in June for another pap. In June, the doc took about 20 mins with me to tell me that my cells are deep in the cervix and are hard to detect which is why in the june 2009 I had an alarming bad pap but the colposcomy showed nothing 2 weeks later in July. So he tells me that is why he didn't find it until now. So here I am a year later sitting in his office. He tells me we will monitor every 3 months with pap. That pap came back good. At that same visit he tells me I will in fact need a hystercomy at some point when I no longer want kids or already have them. I asked him how long and he says he does not know, maybe 2 year window to have kids. Yesterday I went back in and had a colposcomy and he saw one spot he wanted to take out and test. I feel as though I have lots of unanswered questions with a doc who barely has time for me. He gave me his card and told me to e-mail him my questions. I would really like to know where exactly the source of the cancer is, can it spread into other nodes. What I read here and on the internet say this is the type that can spread. I have other medical things that have been happening and I wonder if they are related. I tried to ask that yesterday and he brushed it off. My glands in my throat are swollen always when I get sick. I have lots of issues passing stools. I am concerned that perhaps the whole picture is not getting looked at. If you were me, what would you do? OR Am I just making a big deal out of something that is really nothing? Should I just brush this aside until it gets to a point where I have to deal with it or will it just go away? I would like some answers. Help!

chukker
Posts: 3
Joined: Aug 2010

Dear Seeking, I don't have any professional advice to give you, but I do have personal advice: find another doctor! This is a time of high anxiety and unanswered questions; don't settle for some professional clown who isn't interested in your situation or your humanity enough to sit down and talk with you. What you imagine is always worse than what is if you haven't all the information.
When I was going through my cancer treatment, I saw a highly recommended oncologist - highly recommended because he takes time with each patient and cares about every aspect of your treatment. My oncologist scrutinized my vitamins, my meds, my chemo drugs, my diet (he has an inhouse dietician), etc. He took all the time in the world with each patient, so his waiting room was backed up for hours. (Annoying when you're waiting, not annoying when you have a lot of questions and worries.)
At one point, I had a second opinion from a world-renowned cancer center in NYC. The oncologist there barely looked up at me when we were in his office, and never once glanced at my paperwork to ask about medications or vitamins. He told me he does surgery. Period. He wouldn't be the one supervising my chemo, or anything else.
Phooey! I didn't care if he were the doctor for the Queen of England - he wasn't going to be MY doctor. I went back to my cancer center because that's where I belonged, and I never looked back or doubted I was in the right place.
I'll be cancer-free for one year on January 28th!
As for, "I have other medical things that have been happening and I wonder if they are related." They very well may be. I had numerous unrelated symptoms and saw one specialist after another. In every instance there was nothing wrong (but there was; no one took into account the bigger picture.) I had a tremor in my left hand, terrible back pain, eczema, puffy face, swollen hands when I ran (never had that before), etc. My oncologist said that this is very common. Many people have "unrelated symptoms" before being diagnosed with their cancer.
Don't give up until you find a doctor who will answer all your questions - in person! They're out there.

gigi12
Posts: 4
Joined: Jan 2011

Hi,

I had stage 1b adenocarcinoma. I had a radical hysterectomy to remove it because it can indeed spread once it moves. This was what i would consider aggressive treatment - a radical hysterectomy is major surgery.

I highly suggest finding another doctor. My doctor was somewhat amenable to giving me a little bit of time to have a baby - it was the reason i came in in the first place - because cervical cancers are slow-moving. But overall I didn't want to take any chances. This cancer can be difficult to find (as your doctor says) - i had just had a Pap smear six months earlier and it showed nothing. And once it spreads, it's not good. They caught it with me at a stage where I now have a 94% survival rate - that's great. And you are in an even earlier stage. It's a difficult choice you have, especially since you do want children and are so young. (I was 43 when I went in).

My doctor, too, was very busy but emailing him/and his staff did help to a point. If you have little choice as far as doctors go, please just be as assertive as you can be, ask him questions and mention to him that you feel a little like you might be falling through the cracks. Let me know if you ever want to talk! I agree with what Chukkar says. If you aren't feeling like you are getting answers, find another doctor, or talk to a number of other doctors and OBGYNs.

best wishes!

moebeone
Posts: 2
Joined: Apr 2011

get second opinions asap

moebeone
Posts: 2
Joined: Apr 2011

I had a radical hysterectomy- all out and lymph nodes were negative,however nodes are gone, also had internal and external radiation. I have only had CT once a year now for 2 years and and no issues yet except for lymphodema of my legs and other unmentionable issues.. All treated with jel and device, HOWEVER, my oncologist/gynecologist is awesome and I am clear for 2.5 years.

7hallbergs
Posts: 5
Joined: Apr 2011

I was diagnosed with stage 1b1 cervical adenocarcinoma in 2009. I had a cone biopsy that did not have clear margins, so I had a radical hysterectomy (I kept my ovaries and tubes) with them taking 21 lymph nodes, which were all clear. I get an exam every 4 months and this may will be my 2 year mark. Prayers and blessings to you!

1survivor
Posts: 2
Joined: Nov 2011

I am a survivor of 7 years of adenocarcinoma stage 1a,1b cervical cancer. My doctor was at the University of Virginia and recommeded two types of treatments for my situation. The first option was to do a radiation implant that would have been a two step process where you go into the hospital and are in a lead wall room for 3 days. You can not move or eat for 3 days. The process is extremely painful! You repeat this option the following week for another 3 days. A surgical pod is inserted into the cervix and seed radiation is inserted into the rods. You are then packed with gauze. The second option was 6 weeks of external radiation and 6 weeks of chemo. The first option did not work for me and they damaged my bladder with the procedure. I ended up having to do the second option which I was very afraid of! The 6 weeks of treatments went pretty good. I was extremely tired and really did not have any problems until about the 5th week of radiation. I had some internal blistering after the 5th week that was very painful but was given medication that helped alot. The biggest problem I had from the treatments was extreme fatigue. I was not able to work for about 6 months. Even now 7 years later I get extremely tired very easy. The good news is that I am cancer free! My doctor did not recommend surgery or removal of lymph nodes because there are so many lymph nodes he said that if one was accidentally left it could cost me my life. This is an option he was not willing for me to take. Best wishes to you for a successful battle and look forward to you being on the survivor list.

1survivor
Posts: 2
Joined: Nov 2011

I am a survivor of 7 years of adenocarcinoma stage 1a,1b cervical cancer. My doctor was at the University of Virginia and recommeded two types of treatments for my situation. The first option was to do a radiation implant that would have been a two step process where you go into the hospital and are in a lead wall room for 3 days. You can not move or eat for 3 days. The process is extremely painful! You repeat this option the following week for another 3 days. A surgical pod is inserted into the cervix and seed radiation is inserted into the rods. You are then packed with gauze. The second option was 6 weeks of external radiation and 6 weeks of chemo. The first option did not work for me and they damaged my bladder with the procedure. I ended up having to do the second option which I was very afraid of! The 6 weeks of treatments went pretty good. I was extremely tired and really did not have any problems until about the 5th week of radiation. I had some internal blistering after the 5th week that was very painful but was given medication that helped alot. The biggest problem I had from the treatments was extreme fatigue. I was not able to work for about 6 months. Even now 7 years later I get extremely tired very easy. The good news is that I am cancer free! My doctor did not recommend surgery or removal of lymph nodes because there are so many lymph nodes he said that if one was accidentally left it could cost me my life. This is an option he was not willing for me to take. Best wishes to you for a successful battle and look forward to you being on the survivor list.

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