meredith Posted June 5, 2006 Share Posted June 5, 2006 HI everyone. My name is Meredith, 27 years old, and I have/had small cell cervical cancer. As far as support forums go, I have very few options, as this cancer is only rarely found outside of the lung. So I thought I might try here because my cancer has basically been treated the same as small cell lung cancer. I do hope it's OK if I post here? My story: IN march of 2005, I was diagnosed with small cell cervical cancer. Quite rare. I had a very large tumor--9cm--that was initially treated with high doses of cisplatin and etoposide (6 rounds, 5 days a week, every 21 days). The tumor shrank dramatically and hysterectomy was attempted, but at surgery it was found that residual tumor was slightly attached to my small intestine (not mets per se). She closed me back up. I was referred to another oncologist who has treated sclc, but not small cell cervical. I got more cisplatin and irontecan, plus internal (2 times) and external radiation (5-6 weeks). Two months after completion of all treatment (mid-January), I had PET/CT scans which showed no evidence of cancer anywhere. Yeah! But more scans are coming in 2 weeks, and I'm scared. This cancer likes to come back, just like its lung counterpart. I know there are more chemo options for me if it has come back, but I just dread it! I had so much chemo and radiation that I just felt like dying for several months. I still have a lot of stomach pain from the pelvic radiation, very scarred vagina and cervix (which means sex is out of the question), and pretty bad peripheral neuropathy in legs, feet and hands. It's been very tough. I can't have any children--that was pretty devastating to hear. And I'm quite young, and I felt like there was so much ahead of me, so much I haven't done. I think I need support the most. My family is great, so wonderful, but it's so hard talking to them because I know it makes them so sad. I try to avoid it, even though they ask me to talk to them, to share things. Thanks for reading! Hopefully it's ok if I can be part of this group to get support and information. Quote Link to comment Share on other sites More sharing options...
MsC1210 Posted June 5, 2006 Share Posted June 5, 2006 Hello Meredith, Welcome to the group. Although I cannot offer much in the way of advice as far as treatments, etc. I can tell you this is a wonderful group as far as support. Chris Quote Link to comment Share on other sites More sharing options...
Carleen Posted June 5, 2006 Share Posted June 5, 2006 Welcome Meredith, I am so sorry for all you've been going through, and at such a young age. My husband started his journey with cancer on some of the same chemo's you've been through. He had Cisplatin and Irinotecan and then Cisplatin Etoposide. He tolerated them well, but unfortunately didn't have any shrinkage. I'm glad they worked for you and you've got to build a relationship with NED (no evidence of disease). I know only too well how scary and hard it is waiting and anticipating those scans. You want to be positive and hope for good, but God it's hard. Your human fears and weaknesses refuse to let you go without thinking the worse. Please try and take each day one day at a time and not think about the "What if's", If this does come back you will have plenty of time to worry afterwards, so do not borrow that trouble in advance. I will definitely pray for you to get great results, and for you to feel some comfort and strength of spirit until then. Also know that I understand about the childlessness (is that a word? ). I tried to have kids for 4 years before my husband got sick. He always said he still wanted to have a child with me but we were going to wait until he got better. Now that it looks like that won't be happening, we want to have a baby while he is still here to meet him/her and see its beautiful face. So, I'm currently going through Invetro procedures. There are a number of us here who have been through fertility procedures. Hopefully, when you are ready to be a mother this will be an option open to you. I know if you were unable to save any eggs prior to treatment there are people who donate theirs. And you'd be surprised at what is possible when you let the people around you who love you help. Like you said, you are young, and only God knows what is in store for you. Kids may still be in your future, but just not in the conventional way you may have thought. It does not make you any less of a mom. And now that you are with Ned, those things you haven't done yet... well they are still there for you. Don't quit hoping yet. You fought so hard through all this, so don't give up hope and your ambition now. That is what would be truly unfair. Anyway, welcome. Although our site here may be designed around lung cancer, if what information we have is valuable and helpful to you, we are glad to share it. We may not have specific answers to you unique situation, but as far as caring, loving, support and prayers; well we have those in abundance here. I pray that God watch over you, bless you, and that you know his peace and love. Carleen Quote Link to comment Share on other sites More sharing options...
meredith Posted June 5, 2006 Author Share Posted June 5, 2006 Thanks. I've looked through many of the threads already and have found a lot of info and encouragement. Quote Link to comment Share on other sites More sharing options...
meredith Posted June 5, 2006 Author Share Posted June 5, 2006 Thanks for the words Carleen. I am very sorry to hear about your husband; both of you look very young. I've been doing well over the past few months, despite the fears. Cancer has certainly not been controlling every aspect of my life--just got back from a long road trip actually and am taking an online class from my university (I had to quit school during treatment). I just start getting very nervous around scan time, though I know that's normal. But the anxiety can be so overwhelming. My treatment was very very difficult, and so think I'm even more nervous now at the thought of more chemo than I was in the beginning when I didn't know much about it or how it would make me feel. However, I do feel lucky and grateful that I did have complete response to all the therapy. Even with small cell cervical cancer, that it not often achieved. I think I've accepted what's happened to me--the cancer and not being able to have children. Certainly, I still dream I'll be able to. A lot of people our age are beginning to have children, and I have to admit that I feel lots of envy (or jealousy) when I see new mothers with their infants. But maybe one day I'll get to experience motherhood--who knows? I wish your husband has responded better to treatments. But they are progressing. I was just reading a couple of weeks ago about a new virus that can kill cancer cells of neuroendocrine origin, and human trials are supposed to be starting soon. I wish you both the best. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted June 5, 2006 Share Posted June 5, 2006 You are definitely welcome here, Meredith. Just let us know how we may support you. Don Quote Link to comment Share on other sites More sharing options...
Carleen Posted June 5, 2006 Share Posted June 5, 2006 Meredith, If you are comfortable with sharing your information with us, please add a profile to your account. In the upper right corner you can click on the my profile link. In the middle of the page is a signature box where most of us put down our diagnosis and treatment histories, along with any words that inspire us or whatever. Then that signature will automatically show at the bottom of each or your posts no matter what forum you use. That way if in the future you have a treatment or symptom question you will not have to repeat your history for clarification. Also, if you have a digital photo. you can go to the bottom of the profile page and where it says upload avatar from machine, click browse and select the photo from your computer. I've found .jpegs work, but there are size and pixel limitations. If you need any help you can e-mail me and I will help. Quote Link to comment Share on other sites More sharing options...
meredith Posted June 5, 2006 Author Share Posted June 5, 2006 Hi Don. Thanks. It looks like you and your wife have been through a lot, and it's encouraging to see that you're still fighting! I just need encouragment, stories of survival, etc. And I hope to give support to others who need it, too. Quote Link to comment Share on other sites More sharing options...
meredith Posted June 5, 2006 Author Share Posted June 5, 2006 Thanks. I'll do that! Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted June 5, 2006 Share Posted June 5, 2006 Merideth,welcome to our support family.There are many knowing and caring people here that can help you. Hope your upcoming tests and results are good news.Please keep us posted. Quote Link to comment Share on other sites More sharing options...
Don M Posted June 5, 2006 Share Posted June 5, 2006 Meredith, welcome to this site. I am glad that you have NED now. You had to pay a lot to get to that point. I am sorry it has been so devastating for you. Don M Quote Link to comment Share on other sites More sharing options...
RandyW Posted June 6, 2006 Share Posted June 6, 2006 Welcome aboard Meredith, You are in good hands here. we will do whatever we can to help you on this journey. If you need info, Prayers , ashoulder to cry on, or someone to yell at when the stress hits the fan, come see us. always around like the hotel 6 we will leave the light on for ya. Quote Link to comment Share on other sites More sharing options...
meredith Posted June 6, 2006 Author Share Posted June 6, 2006 Hi Don. I see that you are now at Swedish Cancer Institute! That's where I am as well. My medical oncologist is Dr. Goodman. My radiation oncologist was Dr. Eulau ( really liked him, very nice man). I've been hospitalized several times at Swedish hospital, too, and I'm impressed with the level of care. Best of luck to you. Quote Link to comment Share on other sites More sharing options...
meredith Posted June 6, 2006 Author Share Posted June 6, 2006 Thank you! I look forward to being here and talking with people. Quote Link to comment Share on other sites More sharing options...
Ry Posted June 6, 2006 Share Posted June 6, 2006 Welcome Meredith~ I am glad you found us. You've been through a lot. When I was your age I was also dealing with infertility issues. One day someone asked me if I wanted to have children or if I wanted to be pregnant. I decided I wanted children, didn't matter how I got them -- so we adopted two from Korea. Years later, we conceived the Jillinator that you see in the pic with me. So my point being, there is a baby out there somewhere for you and you will find him or her. Good luck with your treatment. Small cell responds well to chemo. Rochelle Quote Link to comment Share on other sites More sharing options...
meredith Posted June 6, 2006 Author Share Posted June 6, 2006 I did briefly look into adoption, and if I can be cancer-free for a numbenr of years, it's certainly something I would do. The infertility is hard to deal with sometimes, and the menopause symptoms might even be worse! I couldn't believe it when I started getting hot flashes Quote Link to comment Share on other sites More sharing options...
ztweb Posted June 6, 2006 Share Posted June 6, 2006 Meridith, Welcome to the boards. This is such an amazing site. It gives me so much peace to come here every day and read the words of people, all around the country/world, who are fighting a fight. You are more than welcome here. I am somewhat new myself, but always seem to find a question to ask and a plethora of answers to read. This last weekend, the site was down...I thought I would go crazy!!! Welcome, and I am so sorry that you have had such a rough road. God blesses us in many ways, and adoption might be a wonderful option. God bless you Meridith... Quote Link to comment Share on other sites More sharing options...
Don M Posted June 6, 2006 Share Posted June 6, 2006 Hi again Meredith: my radiation onc was DR Mehta. I saw Dr. West a couple of times when I was there to consult on medical oncology issues. I also am impressed with Swedish. I will be doing my followup chemo at my local clinic in Aberdeen. My radiation therapy made use of the electa synergy machine, which is the only one in the Northwest. I was able to have my tumor killed while minimizing damage to my remaining lung. Today was my last treatment day. I call it "dead tumor day". Don M Quote Link to comment Share on other sites More sharing options...
meredith Posted June 6, 2006 Author Share Posted June 6, 2006 Thank you. I am so happy that your father is doing well. The treatment is so tough, probably the hardest thing anyone can go through. Best wishes! Quote Link to comment Share on other sites More sharing options...
meredith Posted June 6, 2006 Author Share Posted June 6, 2006 I saw Dr. West once when Dr. Goodman had to go to a conference. He examined me before chemo.... Dead Tumor Day--I like that! Quote Link to comment Share on other sites More sharing options...
missyk Posted June 6, 2006 Share Posted June 6, 2006 Meredith... Welcome aboard!! I'd never heard of small cell cervical cancer...so of course I had to google it. I'll let Mom know that you're here if she doesn't find you herself. She is a 15+ year cervical cancer survivor who was treated only with external radiation and implants...she might have some information for you...or at least an understanding ear. GREAT to see you're NED!! Many prayers for you and yours! xoxo Quote Link to comment Share on other sites More sharing options...
meredith Posted June 6, 2006 Author Share Posted June 6, 2006 Hi there! Well, it's pretty rare. A lot of people think cervical cancer is just one type of cancer, but it's many different kinds. Small cell is the most aggressive I think. Another interesting thing that I've noticed is that most women I've come across with this type seem to be quite young--20's and early 30's. Neither one of my oncologists had ever treated a patient with this type of cancer, and the biopsy was double checked to confirm the diagnoses. I'm glad your mom made it through! Were her lung tumors a result of cervical cancer recurrence, or were they new primary tumors? Quote Link to comment Share on other sites More sharing options...
Donna G Posted June 6, 2006 Share Posted June 6, 2006 Hi Meridith. I believe you can get small cell cancer in most all of the mucous type membranes in the body as the esophagus, stomach, colon, cervix etc. As with the lung it seems to be the least common type in those areas too. What is interesting is Cervical they believe is caused by a virus. They are pushing a vacine to prevent it they feel should be given to teenagers. I wonder if small cell lung etc could also have been caused by a virus. Wishing you the best. Donna G Quote Link to comment Share on other sites More sharing options...
trish2418 Posted June 6, 2006 Share Posted June 6, 2006 Welcome to the board, Meredith. Let us know what we can do to support you. Trish Quote Link to comment Share on other sites More sharing options...
meredith Posted June 6, 2006 Author Share Posted June 6, 2006 Hi there. My oncologists have both told me that the most common type of cervical cancer--squamous--is triggered by the HPV virus, but they aren't sure about small cell. In my research I've come across cases of small cell in the bladder, prostate, pancreas, stomac, and several other organs. I hope they find the answers as to why some people get the more aggressive small cell cancers. Quote Link to comment Share on other sites More sharing options...
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