Diagnosis: Adenocarcinoma - Stage 1b1

I was diagnosed in March 2008 with a colp. I met with a Gyn/Oncologist and he told me that he thought it was very early. He scheduled a cone biopsy for April 30th. I had a CT scan and the regular pre-op tests. I called his office and (only after I insisted) got a call back from a nurse who said my tests were "normal" on my voicemail. I took that to mean, that the tumor was too small and didn't show up.
I went for a 2nd opinion last week. She reviewed my test results and was troubled that my first doctor didn't call me to discuss them. She said a 1.5 cm x 1.5 cm tumor showed up on the CT. She said she'd stage it as State 1b1. She recommended a radical hysterectomy or a radical trachlectomy. (I knew both of these were possibilities, but I was clinging to the hope that mine was very very small and could be treated more conservatively). She told me that I'd have to leave the state to find a surgeon qualified to do a trachlectomy, and that it was a higher risk surgery and had a higher risk of reoccurrence.
I'm 30 years old and I have no kids, though I want to have my own. I'm devastated by this. Not only am I having a hard time dealing with the consequence of this treatment, but I'm very worried about side-effects. Specifically, I'm worried about the removal of my lymph nodes and the tissue (not sure of the name) that sometimes causes bladder dysfunction. She said both are not common, but I figure if I was unlucky enough to have cancer go undiagnosed then I'm certainly not immune to these side-effects.
I'm trying to come to grips with all of this. Quite frankly I'm concerned about scarring (my skin doesn't scar well). My family said that those things are not important....only living. I agree (and I'm certainly thinking about long-term survival as well), but I'm trying to evaluate how much of my life and body will be altered forever.
Any advice you could give would be very much appreciated. Also, this group has been a God-send to me. I've learned so much, and feel that I'm not alone BECAUSE of you all.

Edited April 15, 2008 at 6:50 pm

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15 replies. Join the discussion

I can tell you that if you have God on your side you have nothing to fear, whenI was diagnosed with stage 1 adenocarcinoma of uterus, I had a radical hys, I knew that God was with and came through surgery like a champ. I had 25 external rads and 4 internal rads in 2007, I am now experiencing late effects but I am dealing with it. I'm having spoyying and light bleeding after sex and after using the dilator because I never did use it , oncology nurse said continue to use it any way. Sex is only once or twice a month thats not enough I was told, so keep praying and I will too. princess1

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chamomile, i'm so sorry you're going through all of this, and certainly it's very scary. i dont have answers to your questions because i think nobody really knows for sure what 'could' happen, especially when there are risks involved with a surgery. it's the doctor's responsibility to tell you about all the possible risks, even when they're unlikely, but hearing some of them is definitely frightening. i think it's really important to trust your doctor. i hope you can find your belief that you will get through this and that you will be ok. you have more inner strength than you even realize.

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I'm so sorry to hear that you are going through this. I have been there and completely understand. I had a radical trachelectomy in 2004. My oncologist never said that it was a higher risk surgery in any way nor did they mention a higher risk of recurrence, so I find that very interesting that your doctor said that. I was also diagnosed at 30 (just turned it when I found out). I can tell you that after my surgery I have had NO recurrence and I get PAPs every 3 months. Please feel free to contact me directly with any questions you have, I am more than happy to share any info with you. I'm actyally going to see my gyn/onc tomorrow for a check up and with some questions about conceiving.
Stay strong and positive, you can and will make it through this!

((((HUGS))))

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Dear chamomile:

I will keep you in my thoughts and prayers. Be strong and like what princessI said,if you have God on your side you have nothing to fear.

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Sounds like your grandmother was a very special person. I have no particular advice-just letting you know one more person is praying for you..This site is amazing. I am not familar with trachelectomy--does it allow you to have children? with c-section or not? Also, just venting here, I wish they would do a PET scan prior to surgery, I wish there was a centinnel lymph node ID method for abdominal lymph node dissections rather than taking so many lymph nodes. I know PET scans are not 100% reliable so "they" would not rely on them ---just a thought from someone you had problems from her lymph nodes being gone. This coming from someone you has always said , "Who do you think 'they' are? --- "They" are us.

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Hi chamomile,

I'm so sorry you're having to deal with a tumor. I was stage 1b2 in 2006, at age 36. Someone mentioned a little too late - after radiation and chemo damaged my ovaries - that I could've frozen some eggs. My head was so messed up after diagnosis that it wasn't something that came to mind. I ended up having an abdominal hysterectomy in Oct. 2006. I didn't have lymph node involvement.

The only scar I have is a line that starts about a half inch below my belly button and goes straight down. It has little dots of scars on each side of it, from where the staples were. I picked up a tube of Mederma from the drugstore and applied that to the scar constantly. I don't know if it helped.

I'm 18 months past treatments and surgery now. The scar looks like someone glued a piece of pink yarn to my belly. It's kind of like a ridge. When I was recovering from surgery in the hospital, I had several nurses ask if Dr. Pippitt did my surgery, because he has such a steady hand... apparently I had "a beautiful incision" that was very straight.

I've had a smidgeon of bladder issues... but for me, it's a small price to pay for my life. There had been pain when my bladder emptied, but that has stopped. There was some big leaks, but that's gotten manageable. A urologist didn't help any... after months of tests and meds (Vesicare), she determined it was just something I'd have to live with, and that it was probably scar tissue in my bladder that would soften over time, so things would improve.

chamomile, during my CC battle, I encountered so many folks with different forms of cancer as I went in for my treatments. I just really felt like I was skimming the surface of the cancer experience, because I knew it would only be about 3 months of treatment. I met cancer patients who'd been battling for years and had severe side effects. Compared to them, I felt like the picture of health.

Just know that in a few months, the biggest portion of your battle will be behind you.

You'll get through it. Take care, Gerri


PS - princess, I'm sorry about the sex issues. It had been so painful for me for years, even before diagnosis. I had light bleeding afterwards, and I tried to avoid it. My gynonc actually scolded me for not doing it. But in the last month or so, suddenly there's NO PAIN!!?! I can't believe it! And my hubby can't either... he's a happy camper :)

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Dear Chamomile,

I like your name...it reminds me of how soothing chamomile tea can be. You may be thinking anything but that right now and I am sorry about everything you're going through.

I was diagnosed w/CIS and it was squamous cell that was affected, so that's a little bit different than yours.
However, there are some common threads here. I was concerned re: my fertility and didn't know of the trachelectomy procedure - even asked my doc why the uterus couldn't be left and just the cervix taken - he said it couldn't be done (long, long story, here) but the gist is the same...find the doctor who is BEST for you. The doctor who will take your calls and return them, answer your questions, listen to your concerns and incorporate them in your surgical plan, experienced, skilled and board certified. This is your body. If that means going out of state to have a skilled MD do a trachelectomy, if that's your choice,...then do it! Surgeries are irreversible, so learn as much as you can as to the benefits and risks of trachelectomy and hysterectomy before you make your decision. There seems to be several women on this site who have had trachelectomies - I think some have even given birth having had that procedure. Another option to investigate is IVF and frozen embryos.
As far as hysterectomy goes, the pelvic support system is disrupted when a hysterectomy is done, that is a fact. I disagree with some here in that the doctors DO NOT always tell you this, yet they know it. The bladder is in front of the uterus and the rectum is behind it with the uterus supporting both of these organs. The bladder is excised from the uterus at the time of hysterectomy. I would discuss this concern with your surgeon. A urogynecologist, I'm currently seeing, told me that preventative things can be done at the time of hysterectomy to secure the bladder (wish that had been done for me, but I had no idea, even though I talked to my surgeon at the time about this, again, long story)...so I am passing that on. It's a lot to digest now. Learn as much as you can about each proposed procedure to limit any surprise side effects (keeping in mind that people are affected differently, too) and to help you prepare for both the pre-op and post-op times.
Be easy on yourself emotionally now. Do you pray or meditate? I know that sounds simple, but that can really help navigate through the many different feelings you're having - it can bring some calm. I am keeping you in my thoughts and prayers.

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Thank you all for your advice and for sharing your experiences with me. I’m sorry that you all have had to deal with this as well.

The fertility issue has really hit me hard. I had always wanted to have the option to have children, but I never felt like being a mom was my focus in life (as seems to be a lifelong need in some women). This was mostly because I had never really been around kids….that is until my beautiful nephew was born January 28, 2008. As soon as I saw him, I knew that I wanted to have children. I also immediately saw the special bond between him and his parents. Prior to this, I just thought a family of my own would come in time and would feel right once I was in a secure relationship (having spent many years in bad ones). Each time I see him now, I am overwhelmed with love, but I also grieve for what I will loose. IVF would be more of an option if I were married. I have a boyfriend of 2 years, but quite frankly…he has not really been here for me during this time and it is not a very good indication of a happy future together (this is a whole other subject of discussion).

I guess this is why I’m really hoping that a trachelectomy will preserve my options. (I am dreading my insurance company telling me that it will not cover it…or being told that I’m not a candidate). Your replies give me hope.

I have some more questions about the lymph nodes. I agree that oncologists should develop a better testing system, to prevent unnecessary removal. When you have a radical surgery, do they automatically remove all pelvic lymph nodes, or just a sample initially? Can anyone tell me if it would be totally insane to insist on keeping them (provided that the cone margins are clear)?

I’m sure I’ll have more questions. Once again….thank you all.

P.S. I’ve been praying. Also, my mom gave me a book on self-healing through positive reaffirmations. I haven’t read it yet. My mom and I went to a spa with “healing waters” the other day (it cost more than 2 mos rent) in the hopes of rejuvenation and relaxation. It was actually somewhat of a disaster due to a scheduling glitch at the spa. I guess I need to find peace from within, but I’m having a bit of trouble with it. I seem to teeter on depression and denial.

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Hi Chamomile,

Your story is very close to my heart, as I went through it last year. I was diagnosed at stage 1B2 endocervical adenocarcinoma in late 2006 at age 34 and the most stressful decision was trying to figure out which option to choose for treatment--cone, trachelectomy, or hysterectomy. I, too, didn't know that I wanted kids until someome told me that I might not be able to. My "oh no you didn't" attitude surfaced and I suprised even myself in realizing that I DID want children as I sat across from my oncologist telling me that I might need the full hysterectomy. Wow.

I'm on the "other" side of the decision now, having gone through two surgeries (my story is in my profile if you're interested). I SO wish that I had outreached more to the community before my decisions...I commend you for the courage to share and gather feedback.

I wanted to just drop a line and echo the sentiments from those who have already replied. I'm sorry that you are going through it and send you moral support for strength and hope. If you ever need to chat through any of it or have specific questions about the cone surgery and/or lymph node dissection, would be happy to share more 1:1.

Best,
Lori
Seattle, WA

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Thank you for sharing, Lori! Connecting with people that have been there and have felt the same feelings helps more than words can say.

I will definitely ask about a repeat cone as an option. I had never heard of a repeat cone for our type of cc. Now, at least I know that it is done and can be successful. How have you tolerated loosing your lymph nodes? Any problems or side effects?

I hope that you get your baby very soon! What a wonderful story it will be.

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WOW! Chamomile I just dicovered this web-site. I read your story and I have to tell you I was shocked! It was like I wrote it. We were diagnosed at almost the exact same time and have gone through the exact same struggles. I thought I was all alone in this, it was very comforting when I found this website and I realized that there are people out there going through the same things we are. I'm being treated at a university hospital and my Dr. told my that they have done 3 Trachlectomies there and that they are of higher risk and that you only have a 25% chance of carrying full term. Those risk are to high for me and I am trying to look at the big picture. My overall long term health is my focus. I am sched. for a robotic (minimally invasive) radical hysterectomy in the middle of May. I don't have any children and my family and I are devastated. I am going to be able to keep my ovaries, so I could always harvest my eggs and use a serogate (not sure how to spell that). I spoke with the nurse today about the lymph nodes being removed and if there were any side effects from that. She said the most common were "Lymphedema" (swelling of the nodes) which is commonly relieved by lymph massage that they teach you. Dosen't sound so bad...huh? We're gonna get through this! I know I sound so positive but trust me, I have days where I don't want to get out of bed and cry a lot! I can't believe this is happening to me. I'm too busy for this and I'm only 31. Everything is moving so fast. I hope to hear from you, I'm in need of more resources and am still researching my procedure.

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Hi Chamomile, I had a radical hysterectomy last year and was staged as 1B2. The surgeon must remove a few of the pelvic lymph nodes so the pathologists can make sure they are cancer free. Don't worry , your surgeon will not remove all of them. Unfortunately in my case, cancer cells were found in my removed lymph nodes. I finished radiation and chemo almost a year ago. It was difficult, and tiresome. I have great support from family and friends. I am now cancer free and I get paps every 3 months along with annual CT scans. I have a few bladder problems, nothing to major. My advice to you is to remain calm and talk to friends and family for support. Ask your doctor many questions(try to take a friend with you at your next doctor's appointment so your friend can remember what the doctor says) I went to the doctor by myself when I found out I had cervical cancer and I was so upset that by the time I got home I could not remember exactly what the doctor said to me. My husband has been to every doc appointment since then. If you have any questions don't hesitate to contact me. Sidney

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Hi Cmeadows, I had a radical hysterectomy last year, now I am in menopause. I am 42, so I was OK with losing my ovaries.( I have a 21 year old daughter). I also had to go through radiation and chemo. I have a few bladder problems and I think I might have Lymphedema. What do you know about this? Every couple of days I have swelling in my right groin area. It comes and goes. What stage are you? It is OK to be scared, I had good and bad days, still do. You are allowed to feel anyway you want. Do not let anyone undermine your feelings. I had great doctors and nurse who answered any of my questions. Take one day at a time.I will be praying for you. Don't hesitate to contact me. Sidney

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Hi Charmomile,
I am so sorry and hope you find comfort through praying and your family and friends. I will pray for you and wish you all the best. You are at the right place on this website because everyone is wonderful and supportive.

God Bless You
marie_eve

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CMeadows, I'm so sorry that you're going through this too. I'll be here for you as well if you need support or just someone to talk to. This community is awesome. It is really a great resource for support and information. Cancer is a shocking experience and I certainly wasn't prepared for the wave of emotions that I would feel. Last night I watched a program on our public television (here in Pittsburgh) about cancer. It included a discussion with MDs afterwards who happen to have also lived through their own cancer diagnoses. They talked about a lot of feelings that we as patients have, that sometimes even friends and family aren't aware of. I couldn't believe how much of what they described, were the things that I was feeling too. One thing is certain: It is OK to be sad and scared sometimes, but it is amazing how people can persevere and remain positive in times of distress. I will keep you in my thoughts and prayers.

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