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cervical adencarcinoma stage 1b1

cammack
Posts: 8
Joined: Aug 2012

I have been suffering alone with my dx since December. I have not spoken to or met one other person who has the same type of cancer that I do. I do not want anyone to have to go through the nightmare that I have experienced. I was misdiagnosed back in the fall and was told there was no reason to worry, and that cervical cancer was a slow mover. I thought I was with the best drs and being as nervous as I was, still researched, and asked many, many, questions. Eventually I said to myself, "stop this now you are at one of the best places you can be for your dx" "you have to put your faith in somebody" So I did, I let go and I gave it to god, and I believed I was getting the very best care I could.
I feel let down and I am having a very difficult time trusting in anyone in the medical field. I do not want to be feeling like this as I know that the stress is not good for me. I am due for a PET scan on Tuesday and I am praying for clean results. I need my life back!!!! I would love to talk to somebody. I never want anyone to ever have to go through anything like this alone as I have. So if I can help anyone or if you think you can help me please, I would love to hear from you. I have many questions and there is so much that I still don't understand.

Thank you
Christine

ccfighter
Posts: 374
Joined: Jan 2012

Hi Christine,
I'm so sorry you are feeling so alone. Cancer can feel so isolating at times. I too have been diagnosed with cervical cancer, and was misdiagnosed for a year before they finally figured it out. It is hard to come to terms with all this. The adenocarcinomas can be sneaky. I had adenosquamous. Feel free to ask anything here, vent, talk, whatever. Best wishes for a clean scan. I know this new life of living from scan to scan is hard. Keep up the fight. You are a survivor!

cammack
Posts: 8
Joined: Aug 2012

Thank you so much for leaving your comment. Yes it has been a very lonley road and I really appreciate you taking the time to answer my post.
I have so many questions I dont even know were to start. One quetion that has me really wondering is this. My dr has told me that "great news, your nodes are clear. That was way back in November right after I had my hysterectomy. My question is when We went into surgery and she did the surgery at the time she said that I did not have invasive cancer. She told me I had Adencarcinoma in situ, she did a LEEP procedure and she confirmed it to be in situ. I questioned her how she could be so positive that I did not have invasive disease when I could see by looking at the LEEP results that they could not rule out invasion 100% so how could she? She told me that the labs allways have to say that and put her hand on my shoulder and said almost smiling as though I was being paranoid " Christine, you do not have cancer" I said will you be doing a radical hysterectomy and she said " no you do not need that. All you need is a full hyserectomy laparospicly. I said well dont you think maybe you should atleast maybe do an open procedure so you can look around? Again, she reassured me that I did not have cancer. So when I called 3 weeks later for my note to return to work that is when she told me. "Christine, I am sorry but infact you do have invasive cancer and you are going to need chemo and radiation. I am just as surprised as you". Anyway, getting back to my question when I went into her office a week later to meet with her for the first time since the surgery the first thing she said was " I have great news, your nodes are clear. I was so relieved but since I have wondered how did you know my nodes were clear? I only had a hyserectomy that when she was doing did not believe me to have invasion. Are there nodes that get taking out during a regular full hysterectomy that are looked at? I just dont get it. What ways do you know about that are used to check for node invasion?

Also if you don't mind I was wondering if you could tell me about your story, grade of canswer and how it was handeled and differnt tests you had done? I think it would really help me. Also how are you today?

Thank you so, so much
Christine

ccfighter
Posts: 374
Joined: Jan 2012

Hi Christine,

Cancer is scary and unpredictable. Was your surgeon a gyn or a gyn/onc? I strongly recommending you see an oncologist that specializes in these types of cancers if you haven't already. When a hysterectomy is done for cancer (regular, laparoscopic or radical) the surgeon also usually removes a number of lymph nodes in order to "stage" the cancer. So, you need to ask your surgeon if this was done and how many lymph nodes were removed. The fact that she is mentioning them as all clear is a very good sign.

My background, I am 33 years old. I have three young children. As I was weaning my youngest off the breast, I began to experience post coital bleeding. I saw my gyn. She did pap and pelvic. Diagnosed me with a cervical ectropion and pap was normal. Went home and cared for my family. Bleeding continued. Went to GP with random non specific complaints of fatigue and irritable bowel type symptoms. Did blood work. All good. Over the next several month I continued to have panic attacks, didn't feel right, post coital bleeding still present but paps had been normal for 10 years. Didn't think much of it. Went to ER in state of panic. Did pelvic exam. Fine. Blood work, fine. Continued feeling unwell. Went back to GP. Demanded ultrasound. All organs normal, except for complex ovarian cysts. Went back to gyn. Pap and pelvic normal. Follow up ultrasound a month later. Ovarian cysts resolved. CA125 test number 11. Normal. We told I was stressed and anxious. All in my head. Two months later develop watery discharge that soon became very foul smelling. Went back to gyn. Does pelvic and sees a tumor on my cervix. Does another pap. Came back normal. Sends me for another ultrasound that sees a small shadow on my cervix but nothing definitive. Goes for a D&C and biopsy. Comes back moderately differentiated endocervical anocrcinoma. Go see gyn/onc. Have MRI that says no lymph/vasc space invasion or lymph involvement. A week later have a pet/ct that says two pelvic lymph nodes are affected. Radical hysterectomy. 5 cm tumor on cervix, poorly differentiated adenosquamous carcinoma with two of six lymph nodes positive for metastasis. I was devastated.

After surgery started carbo/taxol for three rounds, then five weeks concurrent cisplatin with external radiation to pelvis, then two internal radiation treatments, then two more high dose carboplatin. My last chemo was May 30, 2012.

Had my first follow up pet/ct. New nodule on lung. We will watch this. Rescan in two months. Ugg. Waiting again. But, feel ok otherwise. Still fighting some fatigue and wishing my new hair that has grown back didn't look like a cotton ball Afro. Could be worse I suppose.

Please make sure you are being seen by a good onc. Have they told you your treatment plan? Why are they recommending chemo and radiation for such an early stage?

cammack
Posts: 8
Joined: Aug 2012

Wow! Dam have you been through hell!! I had to keep reading that middle pharagraph over and over. Just couldn't get it to sink in! So Let me if I have this right, the name of your cancer is called endocervical anocrinoma? Or did you meen to say adenocarcinoma? If not I have never heard of that. Is it also a glandular type cancer? What type of biopsys did you have done? I have been under the care of a gyno/onco. I read what you said about if a hysterectomy is done for cancer they usually will remove lymph nodes to stage the cancer. And you are right and I have done a whole lot of research and my cancer is stg 1b1 and every story that I have read about woman at that particular stage all have had a radiacal hysterectomy with node disection done. My surgeon at the time of surgery was so adement that "You do not have cancer christine" that she only felt it necassary to do a full hysterectomy. And even though she came in to my room at my post surgical appt stating "good news its not in the nodes" . I dont understand how she would have known that at that point because remember now...she did not think I had invasive cancer, and she was adement about it so what reason would she have for or why would she have checked my nodes!!! I dont know if I'm making sence but this is driving me crazy!!!

Im so tired and I have to go to bed I feel like I'm not making sence! God would I love to sit down and have a coffee or a drink with you!!! Its like I have a billion questions and they all whant to come out at once.

Thanks for telling me your story, so to answer your last question quick, My onc /gyn surgeon, missed the ca, only did a full hyst, therefore could not go back in, cancer was disrupted and scattered, ive already gone through 6 weeks external radiation with cisplatin chemo every monday once wk/ fluids daily/ internal brachy therapy 2 times wk for 2 weeks.

Re staging PET in may was done....dr called all clear and 1 week later "were sorry we see areas of concern in your rectum, urethra,pelvic area.......like you we will have to redo PET in Aug. I cant even tell you how upset and angry I was!! Well I got through the summer gardening and keeping my mind off of it and was due for my Pet last week. The hosp called on Monday at 3pm to tell me my ins was not agreeing to pay, that I was cancelled.....Long story short....Ridiculous it was paid and trust me I know it cost me 1200/mo for my cobra(I think I kknow when I spend that kind of $). Anyway it has been a very long week again but it has been rescheduled and due to be done tomorrow @ 6pm.

God Bless you and thank you so much for your help! They told me I had an area on my lung as well. The thing I dont understand is they have screwed up so much already I just dont understand when they see somthing on a pet why do we have to wait another 3 months!!! What so everything enlarges and they can say ,,,Yup its really there!!!! Now my cancer is known for spreading to all the areas the restaging pet results have mentioned. why not more tests right away?? Its known to be a fast mover. I dont get it.
I'm sorry I just looked at your dx again. You have what I have with squamos type cancer as well...I think I do to but they didnt change the name.
So glad to have found you
Thank you
Christine

ccfighter
Posts: 374
Joined: Jan 2012

Good luck with your scan! I'm sure the earlier scan was just seeing some radiation inflammation and this scan will be clean as a whistle. To answer your question, yes my cancer was the glandular adenocarcinoma originating in the endocervix. After surgery it was called adenosquamous because it contained 10% squamous differentiation. Scans aren't perfect and there is a lot of room for interpretation. Inflammation will show up on the pet scan as well as malignancies. I will pray your scan today puts your mind at ease and there will be NED.

cammack
Posts: 8
Joined: Aug 2012

Thank you so much CC! I usually am not as nerotic as I seem in these posts.
Like you said, I believe and I have been praying that inflamation is all it was.
When I had my last PET in May, I was more upset that they told me one thing and then chaged there minds again one week later.
I chose to enjoy my summer and put it completley out of my mind, and I did!! I made a beautiful pereniel garden and a vegtable garden as well. I enjoyed it very much, and found it to be quite theraputic for me. It's just as the PET neared I started to get nervous again, then they cancelled it and dragged it out yet another week. But here it is and I am on my way, I feel good, but I would be lying if I said I was not scared. I will have a few more days to wait for my results but will know by Friday when I go to my oncology appt.
Positive thoughts only!!!!
I know he did not carry me this far to drop me know!
God Bless

ccfighter
Posts: 374
Joined: Jan 2012

Too funny. I started a garden this summer as well; tomatoes, cucumbers, peppers, eggplants. I have also planted a few trees. It is therapeutic. Nourishing life rather than dwelling on....well, you know. Scans are always nerve racking. It seems like if they are looking they are going to find something. Your cancer was caught early and though there was the possibility of spreading cells though surgery, I believe they got it all out in one swoop and the rest is over cautious insurance. Where do you live? It seems our time zones match up pretty well. I an in northern va a few miles outside of DC. You must be hungry! Did you have to fast for the scan?

cammack
Posts: 8
Joined: Aug 2012

Hi CC,
I just spent the last 1/2 hour or so writing to you and lost it all! I have no clue how!

Anyway, I'll try it again! Is'nt gardening great!!! I felt so good all summer digging, and sweating, and just breathing! To take a not so pretty piece of my yard and turn it into a beautiful, colorful work of art (if I do say so myself) was def a very healing experience for me. I also grew many of the same vegies you have minus the eggplant. I wish I had though, I love it, fried, parmesan, etc....yum!!! This past weekend I had to pull my cuks because I thought they were diseased. The leaves were turning yellow and I got nervous I didn't want it to spread to the big beautiful green tomatoes beside them! But not before I enjoyed several and even made a batch of homemade kosher dill pickles!!!
How have your children handled everything? I know you said one is very young. I also have 3 myself and I thank god for them every day! They are my world. Thank god we were both fortunate that we have had children already. I can't even fathom what it would be like to be dx with this prior to my child bearing years. Had you planned on having more or were you done?
Oh, I ment to tell you I saw your surgery date and mine was 11/11/11. I live in southern Massachusetts. 30 min form Boston and about an 45 min from Cape Cod. Have you ever been to Ma? I have driven through Virginia a few times on the way to Fla. and I went to Mrtyle Beach once. Its very beautiful.
Thank you again CC for taking the time to write back to me. I can't tell you how much better I feel allready! I still find it hard to believe it has almost been a year and you are the first person I have spoken to that has this diagnosis.
Yes I did have to fast for 4 hours and no I wish I was hungry! I havn't had much of an appetite latley so I make myself eat. I lost 14lbs at my last drs appt ( I know, it is making me a bit nervous) but I am chocking it up to the heat and I eat ice cream when at all possible! Hahahaha......

ccfighter
Posts: 374
Joined: Jan 2012

I have never been to MA. My sister went to college in Vermont so was up that way a few times. Beautiful in the fall. Is Smith college in MA? Went there for a graduation many years ago. My kids are 4,7 and 9. Just registered the youngest for kindergarten this morning. I fear I will start experiencing the empty nest syndrome with all my kids in full day school. What will I do with myself?! How old are your kids? It would be incredibly difficult to have this kind of cancer diagnosis before having children. Although, sometimes I feel so sad that I have this disease and they have had to watch me go through surgeries, chemo, lose all my hair, be scared and sad. Their loss of innocence came at such a young age. I'm their mom and was supposed to shelter and protect them, they should be care free and full of life and love. I just pray that somehow this experience for them will become something positive, that their perspective on life will include the awe and wonder of our fragility and allow them to appreciate each and every moment for the true gift that it is. For that I will pray. But for now, they all seem to be doing ok. The oldest has become somewhat clingy. Gets stomach aches at night. We are thinking of having her talk to a counselor. Even for adults this experience seems like too much to handle. I can't even imagine what it is like for a child, watching her mother be sick.
Please let me know how your scan results come out. Heat of summer can certainly cause weight loss, enjoy the icecream! One of my favorite foods too. ;)

cammack
Posts: 8
Joined: Aug 2012

Hi CC, I know exactly what you meen about " empty nest syndrome"! Mine however is the real thing as my youngest is 17 and entering into her last year of highschool. I certainly am not minimizing your feelings as the youngest goes off to school. I remember that feeling well too! You have lots of time left with your little cherubs! Enjoy every moment! You will find differnt ways to fill your time and will look forward to all the wonderfull stories they will tell you around the dinner table at night! They will come running in the door missing you with big fat hugs for you!!! I know mine always enjoyed a fresh baked batch of cookies and a glass of milk waiting for then when they would come inside. Your children will be fine, infact I believe they will be gaining somthing very wonderful and that is 'compassion' and that the world is not all about 'me'. I don't think those are such horrible things to learn at there young age! My children are quite older 28,20,17, and there has been many differnt type issues to deal with and it has been been very difficult. They are not young enough to maybe hide or sugercoat some of the more difficult things we have had to go through. I think a counceler can be a great way to help with explaining things. I would suggest a referal from there pedi doc or from someone you might know. My 17 year old and myself talk with someone and she has helped quite a bit.

As far as my scan goes CC I am sick to my stomach and I am scared to death. You know the both of us have gone through a difficult time with misdiagnosises and things. I can't even tell you how angry I am right now and what has happened and I feel a bit uncomfortable with putting it on here. I don't know what to do and I feel very alone. I am trying to figure it all out and I am not sure were to go for advice as I have lost much faith in my doctors right now. I wish there was somone close by I could meet up for coffee and talk to. Is there some way we can talk on here privatly? Maybe even by phone, I don't know if people do that or not. Anyway, I appreciate you being here and listening. Don't you wory about your childeren,just keep giving them lots of love, hugs, and kisses!!!

ccfighter
Posts: 374
Joined: Jan 2012

Hi Christine,
I sent you a PM with my info if you'd like to Talk. Since this is a public forum I won't leave personal info on here. I continue to post on this site because the adeno's are so hard to research, and I want the next woman who comes along to be able to see my history and treatment and results. Hope springs eternal and I had such a hard time finding info and survivors on this type of cervical cancer that I wanted to make sure someone else would be able to find it here. Anyway, would love to talk. It is so hard to get through this alone. Cancer takes so much from us. Strength in numbers, support, compassion, understanding and acceptance. I'm here.

kimmiehedg
Posts: 27
Joined: Nov 2012

I was diagnosed March of 2012 and had a radical hysterectomy 3/19/12 with pretty much the same scenerio as you. large tumor, spread to several nodes. External radiation with cistplatin, 3 rounds internal radiation and then 4 rounds of carbo/taxol. Just had my follow up PET and says there are too small spots (too small to biopsy) in the pelvis area where nodes were removed. will have follow up scan in December. I have 2 questions for you ccfighter..........since the radical hysterectomy and a shorten vagina, sex is extremely painful. Dr says it will get better but I find that hard to believe if it hasnt improved at all after all these months. 2nd, suddenly I have this throbbing/aching/pressure feeling in the vagina area, kin of like the first day of your period when you were just all aching down there. Have to take 4 motrin every 5-6 hours to make it tolerable. Dr. says give it a month and see if it gets better......could be constipation. I'm pretty sure its not as I am able to go daily. Have you experienced any of these problems?????? any advice/help you would give would be AWESOME!!!! Thanks!

ccfighter
Posts: 374
Joined: Jan 2012

Kimmiehedg,
Sounds like we've been on a similar ride. As for your questions, I have noticed that sex can become painful if it is not enjoyed on a fairly regular basis. Did your doctors give you a dilator to use? A dilator or a vibrator can help stretch the vagina out and prevent scar tissue from forming. This will make sex more comfortable. I do know that the end of my vagina comes up quick, so that my husband is not totally able to insert his whole penis. But...he's not complaining. I don't really experience pain when it comes to sex, but I must use lubricant or friction will become a problem. I have not noticed pressure in my pelvis like you speak of. Occasionally I may experience some pressure that is short lived, but it is usually associated with the need to have a bowel movement or on instances where I have several bowel movements. Though I don't suffer from terrible side effects of radiation, I do have three to four BM's a day. The pressure you feel could be from a number of reasons. The radiation may have caused some lymphadema which could cause the sensation of pressure in the lower pelvis. Nerves are also damaged by radiation and chemo. And surgery cuts through muscles and lots of other stuff so that suffering from organ prolapsed and hernias are a common result. How many lymph nodes did your doctor remove? How many we're positive? Hope you are feeling better.

kimmiehedg
Posts: 27
Joined: Nov 2012

ccfighter,

Thanks for your quick response! I'm sorry you had to go through all this but its nice to talk to others who have gone through similiar experiences. It's also nice to know that things will get better. Did you get your scan for the nodule on your lung????

I think he removed like 27 lymph nodes and 12 or 13 were positive. I agree with you that the waiting for another scan stinks but at least I feel like myself again.....except my head is freexing living in Cleveland and all!!! I'm happy that my eyelashes and eyebrows are coming in so rapidly........they really make a difference!

ccfighter
Posts: 374
Joined: Jan 2012

I live right outsi of DC and went through last winter without hair. I was lucky to have not lost eyelashes and eyebrows. I always had a fuzzy warm hat on. My first pet/ct after treatment was all clear but for the small lung nodule that was not there on original pet/ct. I had a follow up chest ct two months later and it was considered stable. I sought a second opinion from a thoracic surgeon who said he would do lung resection if I really wanted but thought that it was really too small to find and was afraid he would have to remove a larger section of my lung to make sure he got it. He suggested I wait for growth. My gyn/onc feels the same way. I am scheduled for another follow up ct at the end of this month. I just really wish it would disappear. Did your doctor give you a prognosis? It is hard to find much reliable information on the adenos when it comes to cervical cancer. My onc said 50/50. From everything I've read I'm thinking she was being generous.

kimmiehedg
Posts: 27
Joined: Nov 2012

I always have a fuzzy hat on too!! I hated having no eyebrows/eyelashes......I just looked sickly. My gyn/onc just said to stay positive it could be nothing. I just hate the waiting. I really hope it is just gone when I get me ct in December. I would hate to have to tell my kids again and the fact that I just want to be normal me again! How old are your kids? It is hard to find anything on "our" cancer. Your onc said 50/50 that it would come back??

ccfighter
Posts: 374
Joined: Jan 2012

Waiting is the worst! Telling the kids is so hard. Mine are 5,7, and 9. They are my life and my light. How old are yours? My younger two are really too young to appreciate the gravity of the diagnosis, but my9 year old seems to be struggling. She has become really clingy and wakes up at night with stomach aches. It breaks my heart. I hate that I am the reason for her anxiety. I am mom. I should be her cure, not her sorrow.
My oncologist said 50% it would come back, 50% it would be cured. I am a grade 3, poorly differentiated. She only took out 6 lymph nodes and two of them were positive. My pelvic wash was also positive. Totally bummed. All my paps were normal. It's hard to wrap my brain around. I guess it was meant to be. There must have been some reason. Did your oncologist say what your chances of it coming back were? I know we are all a statistic of one...but they throw these numbers around.

kimmiehedg
Posts: 27
Joined: Nov 2012

My kids are 15 and 10, Telling them was devastating. My daughter (15) has really struggled with this. My son didn't truly understand the whole thing but has been extra lovey ever since. I feel the same way about being the cause of their stress/sadness. Not to mention my daughters bff's aunt is dying from cancer (has a few weeks to live) and I know there is this added stress for my daughter with the "what ifs". I just try to keep everything as normal as possible and that seems to help them.
My dr said there was an 20-25% chance of it coming back. All my paps were normal too. Sometimes its hard to believe that I have cancer...........I miss the old me but I remind myself how lucky I am to have found it when I did......doesnt always work though!!!
I will pray for you that everything comes back clear @ the end of the month!!!

ccfighter
Posts: 374
Joined: Jan 2012

Well your prognosis sounds excellent! I will be praying for continued good health for you as well. Hugs.

kimmiehedg
Posts: 27
Joined: Nov 2012

I will pray for you as well! Keep me updated on your scan/test this month.

kimmiehedg
Posts: 27
Joined: Nov 2012

Well, I had an MRI for my discomfort problem I was having and the spots on the PET scan showed up on the MRI and it turns out I have cancer in 2 lymph nodes in the pelvic region. I'm so disappointed that this is still growing after all the treatments I just had. It's so hard to stay optomistic right now. We are shooting for surgery on Dec 10 th remove the nodes. Anyone else have a similiar story???

ccfighter
Posts: 374
Joined: Jan 2012

Oh kimmel I'm so sorry. I am glad they are going forward with the surgery to remove the nodes. Isolated to a few nodes your prognosis remains really good. If you haven't already found it, the hystersisters website is another place that offers wonderful support for gyn cancers. I am sure surgery will go smoothly and they will get the last of those cancer cells out of there. I know this is a tough blow, especially after all the treatment you just finished, that went well beyond the standard protocol. But....there are so many more options and new ones being made everyday. Please look Into some of the ongoing research on HPV related tumors such as tri-Vax HPV and the clinical trials at NIH using vaccine immune therapy. These seem like the right direction for a cure. Hugs.

gturby
Posts: 4
Joined: Mar 2013

Listen, I'm right there with you!

      In 2012, I had a normal pap smear at age 36. In 2013, I went in for my annual exam and routine pap smear and it was abnormal. Expecting to hear I had pre-cancerous squamous cells, I was floored to learn I had cervical adenocarcinoma....and five biopsies all showed the same. I went from 0 to cancer in 1 year. Online research suggested untreated pre-cancerous cells take 10-15 years to morph....I skipped a giant step. I am 37 with a 3 and a 4 year old. In three weeks time, i went from having an abnoraml pap smear to being status post radical hysterectomy and bilateral oophorectomy with a staging of cervical adenocarcinoma 1B. I had the body scans and had 11 lymph nodes tested....all negative.

      It's hard to trust anybody when you feel like the rug was pulled out from under you. If everything is moving fast, take comfort in knowing that it's normal to feel overwhelmed and alone. I think it's very smart that you came to this site for support. There are alot of us out there but we are spread out over a large geographical area. Don't be afraid to challenge your medical staff, get second opinions, and request a little extra time to process things if you have to. Ask friends and family to help even if you think you can handle everyday chores alone. The other thing I did that helped was to imagine the worst case scenario...as hard as it is....and plan for it. I spent time putting wills together, getting banking in order, sending a short I love you to important people, writing care instructions for my girls for people who would be watching them. That gave me peace of mind, and alot of tears, but I was then able to focus a bit more on my situation.

Best of luck, keep in touch with your feelings and the world,

Gwen

 

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