One patient with glioblastoma still alive nine years later
by Jennifert on Thu May 03, 2007 12:00 AM
by Loriseattle on Thu May 03, 2007 12:00 AM
by Jennifert on Wed May 09, 2007 12:00 AM
lori- I hope you are doing well. I wanted to let you know there is a place in arizona that does the trachelectomy as well I believe. I don't know if you have made progress on your other two choices you were looking into. things are getting scary and crazier for me as I near my surgery- it is less than 2 weeks away and this week I am going in for a colonoscopy on friday to make sure everything is okay there because I have chrons/colitis as well so there is more of a risk of cancer developing in the colon anyway so my GI doctor is squeezing me in just to give me piece of mind becuase I am just scared that the adenocarcinoma could have jumped around. I also met with my lawyer today to do my will- because I own a condo and wanted to have everything settled just to have it done. that was a really strange experience. anyway, hope things are going well with you. my next couple of weeks will be crazy so I don't know how much I will be online. Take care- Jennifer
by Jennifert on Mon May 14, 2007 12:00 AM
by Ltk7321 on Tue May 15, 2007 12:00 AM
by Jennifert on Wed May 16, 2007 12:00 AM
Hi- I am so happy to hear you are doing well- I was getting concerned. Were they planning on doing the surgery abdominally? Mine they are doing vaginnally except for the nodes of course. I hear the recovery is easier with it vaginally. I am so glad your pathology came out well. I was praying for you. Do you have any bladder issues? I am worried about that? I know there is a chance they can hurt the bladder with the surgery so that scares me. She told me I will prob only be in hosp 2 days but everything i have heard and read says 3 days is minimum and average. Were you able to wear your own PJ's in the hosp? I went a little crazy with buying comfortable and pretty pajamas for recovery.
My surgery is Tuesday. I am Scared. Remember how you said you were surprised I found a doc in Ct to do my surgery well I talked to my doc about it and I guess i am the first to have in done in CT. She did these in AZ at her previous hospital with a world renowned doctor. Now that she is in CT and my case presented to her she decided to do it and she is having the doc she worked with fly in with her. Kind of exciting.
As for your depression, have you thought of asking your doc for an antidepressant? That could be helpful, if you are not already on one. I am on Prozac and it is very helpful for me at this point. I still have my down days where I am overwhelemed but it does help me a lot.
Stay in touch., jennifer
by Ltk7321 on Thu May 17, 2007 12:00 AM
Hi Jennifer, I meant to reply yesterday but was so tired that I spent most of the day asleep. I think i may have over-exerted myself on Sunday as I am feeling a bit more pain and an more tired than I was on Saturday. I am so happy to hear that you are having your surgery done vaginally as I also have heard that the recovery is less painful and is quicker. How long does your doctor say it will take? Are you working....how long of time off did she advise? They have me not returning to work until 6/28.
I haven't had any bladder issues (yeah). But my doctor did tell me about all the potential risks while doing the surgery. I had a cathedar placed during the surgery and then had it removed about 10 days after the surgery date. Are they having you go home with the cathedar or do they think they will take it out prior to you leaving? Let me know as I can tell you what to expect. From what my doctor has told me, they risks of injuring the bladder are small, but since they will be working in that area it's always a possibility so they want to be sure they tell you all the risks up front. Did your doctor tell you of any risks with regards to the bowels? Again, small risks but things they tell you so you are prepared.
I also went out and bought pretty and comfortable pj's. I have found that louging in some nice comfortable pj pants that tie rather than elastic and camisole type tops are the best! I found some cute ones at Kohl's and Target. You can wear them in the hospital, I pretty much stayed in the hospital gowns myself. Changing was uncomfortable and the gowns are so easy to slip on and off that I just stuck with those.
I can totally relate with how you are feeling right now. I too was so scared for days prior to the surgery and the morning I went into the hospital I had such anxiety. They gave me a sedative prior to inserting the epidural and it worked wonders. It really calmed me. It was nice to have that calm as I was beign wheeled into the OR where they gave me the anesthetic that put me to sleep. Has your doctor told you what the plans are for anesthetic?
Please let me know how you doing and if you have more questions. I am praying for you and keeping you in my thoughts. Do something really fun this weekend as it may help to relieve a little bit of the anxiety and fear you are feeling. Surround yourself with the person or people that make you feel comfortable. Take care and please keep in touch!
by Jessicag74 on Fri Jun 15, 2007 12:00 AM
LTK, Jennifer, and others,
Thanks for letting me share in your experiences. I was diagnosed cervical cancer stage 1a2 about 2 weeks ago, and am now scheduled for a trachelectomy at Johns Hopkins on July 11. It has been very helpful reading about your experience, and I will use some of your suggestions. I have to admit, I am also getting more nervous as I read your posts. I am 32, no kids, but desperately want to carry a pregnancy. I think I am partly in denial, and am just so overwhlemed- my dad died of pancreatic cancer just 5 weeks ago, and it just feels like too much sometimes. So it's good to have others who are going through the same things. If you would continue to share your recovery experiences, I think it would be very helpful- even the pajama info was great. When do you feel like you would/did go back to work? I have a pretty sendentary job, but the surgery seems like a bigger deal than I expected. Thanks, and wishing you quick recovery!
by Jennifert on Fri Jun 15, 2007 12:00 AM
On 5/1/2007 Loriseattle wrote:Hi Ltk7321 and JenniferT, This is Lori in Seattle, WA. My situation mimics yours very closely...34 years old, no children, stage 1A2/1B1 (I'm on the cusp) adenocarcinoma, 3mm-4mm tumor. I have been given the overwhelming task of choosing between three surgery options this month with tentative surgery scheduled for May 23 (all with an accompanying lymph node biopsy): 1) repeat the cone biopsy that didn't get all of the tumor, 2) radical trachelectomy, or 3) radical hysterectomy with removal of one ovary. I'm so very frustrated/scared/angry/confused at the moment, as so many well-intentioned people are trying to encourage me towards the full hysterectomy and I really would like to consider the trachelectomy. However, as you've mentioned, it's not as widely known or performed so I think this scares folks. I was told about Sloan-Kettering and USC Norris Hospital in So. Cal. I'm shortly going to seek the help of a counselor to help me sort out some of the questions. My friends and family are also very supportive, but seem to see only one solution. I would VERY much like to talk with both or one of you after you've had the procedure or just with additional thoughts/insights...it's so helpful to know what it's like, how you recover, etc. and could use the solidarity of someone else who is going through this. I'm feeling a little lost at the moment because this particular situation is rather rare. I will be hoping for the best for you in each of your situations...sending happy energy and strength. - Lori
Hi Lori, I just wanted to let you know how things are going for me- I am sorry I did not write sooner. I am 3 1/2 weeks post op from my trachelectomy and doing okay. They took out 24 lymph nodes, all of which were negative for cancer. I had a cone biopsy before and they did fine some remaining cancer in the cervix during this procedure but the margins were negative enough so that they only needed to do the trachelectomy. The recovery was really difficult. I had to go home with a cathether for 10 days and have still been having some bladder issues- a lot of pressure and difficutly emptying my bladder completely. I have also had a lot of problems with constipation from the pain pills so I had to discontinue them after the first week and just suffer with the pain. I hope you are doing well with whatever you decided to do and I am so sorry I didn't post sooner- i had a difficult few weeks. Jennifer
by 7352n on Mon Jun 25, 2007 12:00 AM
I am scheduled for the trachelectomy on July 12th. I am also 32 and my husband and I had just decided to start trying for our first baby in the fall when we found out that I had cervical cancer. Given that I asked my gynecologist how soon we can try for a baby when she was doing my cone biopsy to deal with the abnormal PAP result, she was talking trachelectomy in the same breath she told us that I had cancer. I didn't realize they were so hard to come by until I started googling as I was immediately referred to the only hospital in our city that does them and was scheduled for the first available surgery date.
I also want to say a huge thank you for those who shared their experiences, especially the pyjama tip... I've been wondering about that :)! Given that I feel completely healthy this whole thing feels very surreal: like Jessica said, it seems like a much bigger deal than it feels.
I was told that if "all goes as planned" I will probably be ok to return to my desk job in 4 weeks and that we should start trying to get pregnant as soon as I am healed from the surgery.
Good luck to all with recoveries and getting pregnant!
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