I was diagnosed a week ago with cc from my biopsy, but when my dr was taking the biopsy she said it probably was cc. My world was turned upside down, panic, scared, anxiety, sad, mad and very terrible thoughts ran through my mind and body. I’ve finally calmed down, and am very grateful to all you lovely ladies for sharing your journey, I’ve learned so much in the past couple days just reading through this forum. Btw I’m in the USA so some terminology maybe a bit different
I just got my Pet Ct scan appt for June 1st and my 1st appt to see Gyn Oncologist on June 3. It just got more real, I still can’t believe I have cc, I wake up in the morning and realize it’s not a nightmare, it’s happening to me. Since I don’t know my stage and treatment plan, I have not shared this news with anyone except my husband, until I know more, hopefully after my appointment on June 3. So planning on using these next weeks to prepare for the battle. Hoping I don’t need surgery, if my dr could see the cc, I’m afraid it’s going to be at least stage 3 and hopefully not 4, I’m sure we all go to these dark thoughts, but trying to stayed grounded and positive. Thank you all again for being so kind to share your stories and advise. I’m sure I’ll be asking more questions as my journey progresses. I really want to keep working too, maybe shorter hours, I work from home, guess it will depend on how I am affected.
Sorry you’ve had to join this forum but it really is an amazing place to find support and ask questions. I think we all know how awful the waiting is and it really does feel as though life stands still while you wait for the full results.
As hard as it is, the best advice I got was to try and stay as ‘normal’ as possible and did find that sticking to usual routines made the time more bearable. Just be kind to yourself and make sure you take time out to do something nice for yourself and whatever you need to get through the next few weeks.
Let us know how you get on and sure others with the same staging will be able to offer better advice then.
Sorry you’ve found yourself in the club no one wants to belong to but welcome.
I hadn’t had a smear (Pap) test for about 12 years and was experiencing post menopausal bleeding when my cc was first discovered. Unable to tolerate a speculum examination I was referred for a hysteroscopy under GA as it was thought I had fibroids. When I was in recovery from the procedure the surgeon told me there were visible abnormalites on my cervix most likely cc. My final staging was 2A1; so the fact your dr could see your cc doesn’t necessarily mean it will be stage 3 or 4.
It can difficult in the beginning particularly on an emotional level; there’s so many unknowns and dark thoughts do seem to creep in and try and fill the gaps. Like Laura I found sticking to the usual routines helped me get through.
I just want to echo what @Jazza has said. My tumour was also visible. They actually tried to get me to look at the screen but i wouldnt. My stage was 2B. It was 3.8cm by 2.4 cm ish. It was also further up but they could see it. It had spread every so slightly to the other side of the cervix and was just touching the top on my vagina.
Keep postive girl it might not be as bad as you think xx
Thanks so much Laura-s for the kind words, I think the first couple days of hearing cc, was the worse part. Will keep you posted once I know more, as I am sure I’ll have more questions.
Thank you Jazza. I too had not been for smear for 9 years, and was also post menopausal with watery discharge and occasional bleeding, that’s what scared me into finally going to see the Gyno Dr. I had a dreadful feeling something was not right and had to face my fears and get make an appt. When the dr tried to do a smear and exam, I started bleeding so she couldn’t get a clean sample, and referred me to Gyno Dr. She did mention cc as the worst case scenario. Hoping I don’t need surgery, I see how complicated that can be and still have to probably go through chemorads too. I feel better knowing more about treatment options you ladies have experienced, and will soon enough know my options and get on with getting cured. Trying to be positive, I know it’s very important to my mental well being. Thank you so much.
I don’t think I would want to look at it either, though maybe I should embrace it and ask it to leave my body . My gyno said she couldn’t get a biopsy of the uterus, because the tumor was blocking the opening. A couple hours before the appt, I started to bleed again, so when she took the cervical biopsy she had to keep swabbing the blood. After she took the biospy she basically said you have cc. Which was as you all know was beyond shocking, more like horrific. Now I feel like my right under arm lymph nodes feels a bit swollen, and my legs feel a bit strange, I’m trying not to imagine everything wrong but, until I know what’s going on, I will be in this crazy state of unknown of imagined or real symptoms.
A git ago the Gyno nurse called to confirm my dr. appt, and I got to ask her a ton of questions. Dr will do physical exam and have results of Pet CT and let me know best treatment plan. I can take as long as I need to make the decision, get a second opinion too. If I need surgery it may take 4 weeks to get on the schedule since covid protocols, but it could be sooner too. Chemorads be quicker to get appt started. She said when dr’s choose surgery, it’s a more complicated decision, since the bladder and bowels are so close by, so best to see what the dr recommends before worrying about it. She also said many people still work through their treatment and they work with you to reduce the side effects, infusion takes 6 hours and side effects if any will be a couple days after, so people tend to do before the weekend so they can recover. Anyway, she made me feel a lot better, I guess ladies, for me knowing these things are making me feel more hopefully, and looking forward to beating this with you all. Still much more things for me to read on this forum which I am so thankful for, where else can anyone know what I’m going through, this and all of you are a godsend! Thanks so much!
Welcome to the club that none of us wanted to join! I am also from the US, I live in Florida! I agree with everyone in saying the wait is awful. I remember worrying constantly during this time about if it had spread and what stage it was. It was also quiet a rollercoaster for me. I was told at one point from my MRI that my tumor was small & localized and they staged me at stage 1 and thought surgery would be my treatment. Then my pet scan showed lymph node involvement and I was told my tumor was aggressive (grade 3) and that I would have to move forward with chemo/radiation. I just finished chemo on Tuesday, and am taking a short break from radiation because my blood counts are too low and hoping to finish my last 5 next week. Then I have 4 internal radiation sessions in June! In the US we do it a bit different then in the UK- we have 6 chemo instead of 5 and 31-36 radiation instead of 25 and brachytherapy is done differently too. Hopefully your stage is early, but if not then just know chemorads are doable. I worked throughout treatment, but wouldn’t recommend it because it is tough, especially toward the end. I did what I would when I could, but was not nearly as active as I was used to being. I think one of the most helpful things I did was join a group with woman who were getting treatment for the same stage at the same time as me. We chatted daily and helped each other through treatment! Good luck and feel free to reach out anytime if you have any questions!
Wow, thanks for all that information, looks like we have a longer treatment plan in the US. It’s just so hard to imagine the rough road ahead, and how bad it’s going to be, guess the one day a time approach would be a good thing. I am already thinking about how I’m going to manage my work schedule, which should not be my main concern, just getting through the treatment should be my top priority and resting so my body can fight this.
Glad you are past the half way mark, sound like this is when it all starts really gets tough. I hope I can find some treatment buddies too, that sounds great to have the support of others going through this fight. Thank You @Hayhay10, I’m sure I’ll reach out once I know more.
Hi @ShareBear, like everyone else I’m so sorry you are in this club.
I just wanted to say that I really get what you are feeling right now, I was in exactly the same only a month or two ago, my tumour was also visible so like you and probably everyone else on here thought the worst and suddenly felt like I had aches and pains everywhere!
The kindest thing you can do for yourself right now is make sure you take some ‘you’ time, spoil yourself!
Honestly when you get your plan you will feel so much more able to deal with it all, and I’m a firm believer in trying to be positive!
I’m just starting chemorads now so not to far ahead of you, wishing you well xx
Thanks @Gizzy, I’m sure it feels goods but scary to start treatments, but I just want to get through this, this period of waiting. It is the perfect time to get everything in order for the upcoming months, I think I could start end of june or early july. It’s also hard to not have any treatment until them, knowing I have cc growing in me. I look forward to hearing more about your journey, and wishing you smooth sailing on your treatment and speedy recovery. Thanks Gizzy!
I felt the same way about work, and in the beginning I was in the office everyday and it helped keep my mind off treatment. On my 5th week I ended up with a bug, similar to Covid but not Covid and that knocked me out for a few days, and then my last week of chemo I just really needed the extra sleep so I worked from home. It’s defiantly doable, but I think resting and binge watching Netflix is much more appropriate lol. The chemo nurses were great and said that if I ever felt crappy to come in and they’d give me fluids but I hate needles so I never did. The best thing I did was take the help from my husband- he did the cooking, cleaning and helped with our two little boys during my treatment. He was a real life saver! So defiantly ask for help and take it when you can- whether it’s post surgery or during chemorads, the help is so beneficial! Good luck and keep in touch
Great to know @Hayhay10 ,you also have two little boys on top of working, that’s amazing. I work from home so at least I will be able to be more comfortable dealing with feeling crappy. Might be tough being on phone or zoom meetings though, I have so many meetings every week. And will take a day off maybe every week unless they just let me slide on daily rads and on chemo day. Will take at least a week off to recover if I need surgery. And also planning on taking another week or two off at the end of treatment, just to rest and binge watch Netflix, lol.
Hard to imagine how bad the fatigue and side effects will be, honestly the fear and waiting before going to get the biopsy and after, drained me so much I just thought it was the cancer making me tired, but once I got over the fear shock and anxiety I wasn’t fatigued anymore, so just saying the emotional/mental distress alone will wipe me out, so I must save my precious energy to fight the cancer instead of wasting it on worrying and being scared.
As for asking for help, that is so hard for me, but hubby is committed to taking care of me and stepping up to help, he’s already trying to cook more dinners for me. I’m sure my friends and neighbors will help too, and on my load at work, my coworker and team will help out.
When do you start waking up in the morning and really accept you have cc? My first thought upon waking up is this really happening to me? Then realizing yes, this is for real. Maybe when I start treatment? I still cannot believe this is my life. and the battle ahead.
We’re all a bit different, not only in our diagnoses but our circumstances and how we cope etc etc. Early on in my ‘journey’ one of Jo’s volunterrs suggested I keep a diary and jot down how I’m feeling etc I think it helped me cope a bit better and it’s illuminating looking back on it.
Thanks @Jazza , for the suggestion, I guess the not knowing part is contributing to my anxiety and accepting I have cc, once I hear the staging from the Oncologist then I know what’s really ahead.
@ShareBear I hope you’re feeling better! I read your post about when it’ll actually hit you that you have cancer. I don’t think it’ll ever hit me… I try not to think about it, but it’s the first and last thing I think about each day, and sometimes I can’t accept it during the day. We’re surrounded by the C word. One thing that’s has helped me cope is knowing I’m not alone. There are far too many of us going through the same thing, for cervical cancer and many others. Luckily, cancer treatment has come very far, and we are lucky to be living in a time when modern medicine is so great. Even if it never kicks in that you have cancer, that’s okay. Just do what you have to do to get through each day! Xo.
Thanks @Hayhay10 .Not too bad today, I didn’t dwell on it for very long this morning, I guess it’s easy to spiral downward when fear takes hold of thoughts dealing with cc. I was on google the other day and it was down right depressing reading survival rates, especially since I have no idea of my staging. No wonder you all say stay off of google. I trust you ladies and hoping I can be cured, I want to also hear it from the Oncologist. I know we all think the worse so it’s a difficult time not knowing, both good and bad depending on the outcome, should know next week Friday 6/3😬.
. My gyno said she couldn’t get a biopsy of the uterus, because the tumor was blocking the opening. A couple hours before the appt, I started to bleed again, so when she took the cervical biopsy she had to keep swabbing the blood. After she took the biospy she basically said you have cc. Which was as you all know was beyond shocking, more like horrific. Now I feel like my right under arm lymph nodes feels a bit swollen, and my legs feel a bit strange, I’m trying not to imagine everything wrong but, until I know what’s going on, I will be in this crazy state of unknown of imagined or real symptoms. 
Superwoman x
and the battle ahead.
