Hi ladies-
I've been reading a lot of postings lately of a lot of newly diagnosed being really concerned and getting a little freaked out because of all of the crisis posts on the board.
PLEASE know that there ARE a LOT of long term cervical cancer survivors out there. I myself am a 10 year squamous cell survivor. I am now approaching 40 with a bullet and only recently within the last couple of years, started talking, blogging and sharing my story.
Because this is an online forum, women that are 40, 50 & 60 did not grow up with technology as part and parcel of their culture. A lot of women that are older than me, don't understand the internet, don't want to understand it and many don't want to talk about their health in a "public" place.
In my travels with my volunteering for the NCCC, I've spoken to women that are 10,20 & THIRTY years out from cervical cancer. However, they just choose not to sing it from the rooftops - mostly because doing so it just not how they were brought up.
No one gets off this planet alive, but know that this disease IS survivable!
Love & life to you all-
Shaundra
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There ARE long term survivors of cc!
- By ShaundraNCCC-AZ
- Posted September 11, 2009 at 1:57 pm · 18 replies
- In Hope, friends and humor
- Shared with the public
Explore topics in this discussion:
Cancer Surgery Hysterectomy Menopause HPV Pregnancy Gardasil Cervical cancer
18 replies
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- Newest first
- By SurvivorJan
- Posted September 11, 2009 at 2:09 pm
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Thanks for the reminder Shaundra!! I know I've been in a little "funk" the last few weeks. I needed to hear that.
See you soon!!
Love, Janet
- By ShaundraNCCC-AZ
- Posted September 11, 2009 at 2:15 pm
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Time to get un-funkafied! The conference is only 28 days away! yahooooo!
- By hopeandprayers
- Posted September 11, 2009 at 5:13 pm
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Shaundra,
Everything you said makes sense. I can completely understand how older woman feel about not talking about this sort of thing. Even when I was growing up I didn't have "sex" talks with my mom, but I do with my 18 yr. old daughter.
I think also with time, the long term survivors don't think about it as often as some of us that are new and still adjusting.
I am very glad that you have shared your story with us. You give us hope and inspiration for a long future. I love to hear from women on this site who are long term survivors.
And like you said, not one living thing leaves this world alive! I just hope we can stick around for a good while. Amy
- By sapphkat
- Posted September 14, 2009 at 2:51 am
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I think that often the ones that need the support are the ones that are still going through this. People who are cancer free no longer need this website and can go about their lives like normal.
I know that I for one, come to this website when I need to rant, when I'm scared, when no one in my life knows what I'm feeling. I need to be able to come here and not worry that I have to monitor what I'm saying for fear of scaring someone. I do that ENOUGH in my real life. I have to pretend with everyone that I'm ok. Everyone except the people on here. The minute I can no longer speak freely on this website, will be the minute I can no longer get the support I NEED from this website.
I think it is common sense to realize that there are positive stories out there. But I think that instead of trying to focus on positives, we need to focus on the support we get from everyone going through these same overwhelming feelings together. To know that you're not alone in this, makes it seem less scary.
I shouldn't have to apologize for feeling like my life IS in crisis. This is the worst thing that I can imagine, and while there may be people going through worse scenarios. I need to feel like my fears and thoughts about this are valid. I come here, when I can't tell anyone else what is going on with me. I need that.
Sorry, maybe I am being overly sensitive and overreacting, but this discussion made me feel like I shouldn't be posting things I need to in order to feel ok with things.
- By Nurkao
- Posted September 14, 2009 at 9:19 am
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Thanks, Shaundra:
I am glad to hear that you are a long term survivor & thanks for sharing the information with us. If you don't mind me asking, what stage was your CC? We all need to hear about long term survivors on this site. I am a 20-month survivor & I don't know if I will ever get over the idea that there is a "bullet" out there that could raise come back at any time.
- By ShaundraNCCC-AZ
- Posted September 14, 2009 at 11:02 am
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Amy,
I can't wait until we celebrate YOUR 10 year cancerversary, it will be here before you know it!
Sapphkat,
I'm sorry that my personal story has clearly upset you. That was not my intent to upset anyone. The intent is to share my survival story and that there are positive outcomes too. Not always, but in my case, definitely. I do know what it's like to have life as I knew it ripped out from under me. I was trying to start a family with my husband and instead of getting pregnant, I got cancer. We have no children because of it. So I certainly know what it's like to be devistated due to cc. And at that time, there was no NCCC for me so I DID have to go through my ordeal alone. Undoubtedly the NCCC is a safe haven to be open and honest with others - with all of our stories, good and bad.
Nurkao,
I was 1B, grade 3. I went from clear pap to an 8x9cm tumor in 10 months. So it was very fast growing, however, I'd had displastic cells and abnormal paps for nearly 10 years before my invasive cc dx and I think my new doctor just wasn't familiar with my situation and I wasn't a good advocate to discuss it with him. I did not have any chemo or radiation and kept my ovaries. I was only 28 so he wanted to try and keep my ovaries so I could go in to natural menopause when the time came. I was concerned that he wasn't doing enough by putting me thru chemo and rad and I too was very concerned about one rebel cell setting up shop somewhere else, but, 10 years later here I am. I do know of other girls that had the same stage and type as I, and their Drs did put them thru the full chemo and rad potocol. So it just depends what the gyn onco feels is the best method. My first gyn onco wanted to do a procedure on me that he'd never done before and even in my basic research, I found that I wasn't even a candidate for it anyway because my cancer was too agressive. Thank God I got a 2nd opinion and fell in love with gyn onco #2 who did the full hys and lymph dissection. I had no node involvement after 30 nodes removed, so that was what he based his decision against chemo and rad for me. He said I hit the cancer lottery. And I agree. Once I hit my 1 year mark of remissions, I was able to take a deep breath, then it was 2,3,4 years and finally when I hit 5 years I was really feeling good about my remission. Then once I hit 10 years (in April) my husband threw a huge party and we raised $1,000 for the NCCC. So that's how we celebrated. And 10 years flew by in the blink of an eye. I still can't believe it's been this long. I've met so many fantastic and dynamic women through the NCCC that I wouldn't change anything for the world.
Hugs and health!
Shaundra
- By tam1
- Posted September 14, 2009 at 1:25 pm
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shaundra - i took your post the wrong way too. i'm one of the ones going through a crisis too. then i started apologizing because i thought i was being too whiney and a board hog AND scaring newcomers here to death.
it makes sense now. thanks for clearing that up. i desperately want to be in your spot, 10 yrs. out and life is good.
- By ShaundraNCCC-AZ
- Posted September 14, 2009 at 2:11 pm
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Sapphkat & Tam1,
Are you or have you considered coming to our conference in Chicago Oct 8-10th? Its an amazing opportunity for you to be able to connect with other women in exactly your same situation. We have over 100 women and men that are coming to listen, learn and connect. We still have some scholarship money left if you want to apply? Go to our regular website and then all of the conference info including the applications and registration are there. www.nccc-online.org We would love to have you. Please consider it. You are welcome to bring a friend or a family member too - the conference is not just for patients or survivors, but for EVERYONE that has an interest in HPV and cc etc.
Shaundra
- By PJ2
- Posted September 14, 2009 at 2:42 pm
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I agree with Shaundra, as I am a 10-year survivor as well.
However, I definitely feel connected to this site and the women who are part of it and do not feel that I have simply moved past cervical cancer now that I am healthy. I too suffered at the hands of being diagnosed when technology was subpar and the only info I got at the time was about a hysterectomy and stuff about my potential mortality rate.
This thing consumed my life for so long and plagued my every thought for years until I found the NCCC about 3 years ago. Until then, I felt isolated, alone and ashamed - suffering under the pressure of stigma, cultural conformity and religious oppression at the hands of my family and friends. I was alone and nobody I knew had ever gone through what I was going through, at least that I knew of in my immediate circles. I was left feeling like a freak!
The fact is, I don't think we ever truly move beyond out diagnosis, not matter what stage you were at at the time it happened. It is something that stays with you, in the recess of our mind and plays on your thoughts whenever you feel a twinge in your belly, have an unsual period or just have a glimpse of previous symptoms.
Fact is, I am 10 years out, HPV and cancer free this whole time and currently pregant with my third child, but when I deliver that baby in February my doctor is also going to poke around my uterus and cervix and take biopsies for study, as he is under the impression that there is something wrong in there and that I will need a hysterectomy in the next year or two. So even thought I test normal, it is still ongoing.
So do I feel I should be gone from this site because I am technically healthy - no. The NCCC is like family to me - Alan, Rachel, Shaundra, Sarina, Cindy, Jo (FSL) and countless others, as they have made me feel like my life is my own again and really helped me to come to terms with what I have gone through. They have helped me put things in perspective and helped me learn a lot about what I am countless others have gone through. They have also opened doors for me to work with Merck, attend regional meetings on HPV, get invovled with other organizations and encouraged me to do media interviews and share my storty. I have also been fortunate enough to attend health organizational meetings because of the NCCC and learn more to share with others.
To me, this site is as much about the survivors as it is about those currently going through treatment. Life is about learning from elders and other experience, so if you can benefit from the knowledge and experiences we have all had, then I say this site is better for it.
Just my two cents. I also suggest for anyone here that is having a rough time, you shoudl check out the conference. I unfortunately can't make this years because of complications in my pregnancy (another side effect left behind by HPV and CC), but can tell you from years past that other than my wedding and birth of my children, it was one the single most moving experiences I have had - just amazing. I have forged life-long friendships and just learned so much. It is as much informative as spiritually healing, so I suggest checking it out!
xo,
P
- By tam1
- Posted September 14, 2009 at 4:25 pm
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I attended the first conference in washington dc in 2007. I showed up late (not until sat. morning) because I had just went through surgery and was a slow mover. I am considering going to the 3rd :)
- By ShaundraNCCC-AZ
- Posted September 14, 2009 at 4:32 pm
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Oh Tam, PLEASE DO try to come! This year it's going to be so fantastic! We have David Romanelli, Yahoo's Mind/Body Expert speaking and doing an optional yoga session and Julia Sweeney (of Saturday Night Live fame) who is also a cervical cancer survivor, is going to be a speaker too. So we are really trying hard to balance the clinical presentations with survivor and healing presentations. And like I said, we still have some scholarship funds available so that would help offset your costs if you are concerned about the travel expense. Please consider bringing a friend or a family member too - the more the merrier!
Shaunrda
- By dazednconfused
- Posted September 14, 2009 at 10:18 pm
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To all -
I don't know what I'd do without this site. I hope everyone keeps posting - successful or not, sad, happy, terrified, relieved... you name it. With so few other places to turn to in situations like ours, the more input the better. I wonder how many women stumble onto this site every day just to 'browse' and gather information when they are confused and scared? Type in HPV on Google and you get flooded with info on Gardasil! If we're here, then we're beyond that point! Is there a hope of any sort of cure or treatment for HPV, or with the advent of vaccines have they given up on us? THAT is something I hope will be addressed at the conference!
I've learned more from this one website than from my doctor and the entire rest of the internet combined, and I especially value the input of those who have been around the block with HPV. I wish I DIDN'T have to know about it, but now that I do, I'm thankful for everyone who is here.
- By love2sing
- Posted September 15, 2009 at 11:24 am
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I am a 52 year old, 10 year survivor (this week!) of Small Cell Neuroendocrine Adenocarcinoma of the cervix; the most rare and aggressive form of cervical cancer. And I never forget the journey, my "sisters" who are going through this, and I come to this site frequently to read, learn, remember, encourage. All who come here - no matter what their current stage or situation - need to feel free to vent, cry, inquire, inform, share and help sustain each other. 10 years ago there was nothing on the internet about SCCC, except Case Studies of those who did not survive - I was terrified, even at Stage 1B1 - but am here to tell you that though the journey is difficult, there is HOPE and there are survivors!! and - as a side note, not all cervical cancers are caused by HPV.
- By ShaundraNCCC-AZ
- Posted September 15, 2009 at 11:53 am
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Dear Dazed-
We WILL be discussing the current status of HPV vaccines as on Sept. 9th the FDA just recommended Cervarix - the vaccine developed by GSK be approved for use here in the U.S. and also recommended Gardasil be approved for use in males here in the U.S. as well. They have not been officially approved as of yet, but s/b within the year now that the FDA has reviewed all of the research and data for both trial groups. If you go to the www.nccc-online.org website and click the blue conference bar and then "Registration Form & Agena" you can see all of our featured speakers and their topics and you can see where we've dedicated an entire segment to the vaccines. I hope you are coming to the conference. I would really enjoy the opportunity to meet you.
Dear Love-
What else can I say but YAHOO for YOU! I hope you are coming to the conference as well - our girls need hope and they need to know that the light at the end of the tunnel isn't always a freight train. Please consider coming. Its truly a life changing event for so many on different levels for all different reasons.
Shaundra
- By sapphkat
- Posted September 15, 2009 at 10:41 pm
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Shaundra,
Sorry for taking your post the wrong way, I was more focussed on the part where you said we were posting too many "crisis posts"..
I do agree that it is good to hear from survivors and people that have positive stories. I just don't want to lose this as a place to vent or whatever when I can't tell anyone else.
- By Nurkao
- Posted September 16, 2009 at 10:54 am
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I am so glad to hear from all the survivors who have posted. I am a survivor of 20 months & it is very difficult to stop thinking of the word: Recurrance! Thoughts & prayers to all on this site who are experiencing any stage of CC & HPV.
- By flowershoplady
- Posted September 16, 2009 at 10:58 am
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I think the 'crisis' posts are to be expected as most women feel like they're overwhelmed when they get a cancer diagnosis, and in my opinion, it is a crisis. I think they're not only expected, but welcome. For many of us, this is a safe place to share our fears, our anxieties, our feelings of loss of control. And, yes, there are many cervical cancer survivors. There are also many women who've never been diagnosed with cancer, yet deal with ongoing surgeries for dysplasia. We may 'survive' these health issues, but life often is not the same afterwards, and that's why there's such great support here, to help each other get through it.
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