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squamous cell carcinoma

tecara's picture
tecara
Posts: 19
Joined: Nov 2010

I was diagnosed last week and I'm terrified. I have an appointment with the specialist on the 2nd but hope to arm myself with knowledge before hand.

Does anyone know what this type of cervical cancer is as far as severity and prognosis? I have not been staged yet but seems everything I read says that no matter what the stage a hysterectomy is done. What is the recovery time? If chemo and radiation is needed how long before returning to work? I stand and walk most of the day 8-10 hours shifts.

any help would be greatly appreciated
Terri

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

Terri,
Sorry to see you join the ranks here, but GREAT to see your coming out of the gate ready to fight and asking all the right questions. Feeling terrified is normal...your walking into unknown territory. Everyone's treatment and response to treatment is a little bit different, so it's hard to give you a direct response or time line to your questions.
First off, don't allow yourself to become fixated on statistics! You are not a statistic...you are a unique individual! I was dx with stage IVA, 5/08, and am still in remission...YES!!! Have I had scary moments? Yes. Unpleasant side effects from treatment? Yes. Frustration at the docs (you'll have many)? Yes.
Depending on the size of the tumor, many docs do choose a hysterectomy as a first line of defense. It will also depend on what your scans show. Has it spread outside the cervix? My scan did not show anything but the mass. I went into surgery expecting to come out having had a radiacal hyster., but instead came out with everything intact still. It had spread into the pelvic and abdominal cavity. So they took a bunch of lymph nodes and stapled me back together. Some docs choose to do chemo and rads if the tumor is too large, then perform the byster. after treatments are completed.
Chemo and radiation treatment will also depend on the stage of the cancer. When done together, they compliment each other and you get the best results. Generally, you will start out with external rads and chemo, then follow up at the end with brachytherapy (internal radiation). Some tolerate the treatments very well...I was not one of them. I stopped working the day I had my surgery and went back to work two weeks after treatment ended. I normally work 10 hour day, but started back at 8 hours day and worked my way up. It was exhausting!
People tend to breeze through the first 1-2 weeks of radiation before the side effects start to appear...generally GI symptoms, the first being heartburn. They have meds for everything, so don't be afraid to ask for something and make sure you keep your doc informed of any symptoms your having! If they decide you need chemo, it will most likely be Cisplatin. You don't loose your hair, but it's a great one for nausea. They have meds for that. If something isn't working, tell them. I ended up with a combination of meds they used back in the '70s, because the new ones out weren't effective for me. If possible, eat something before chemo treatments to decrease the nausea. Someone suggested this to me and it really worked.
Most important, write all your questions down and take them to the doc with you. Actually, taking a trusted companion with you to help with the questions and write down the answers is very helpful. Your head is spinning right now and half of what they tell you will go in one ear and out the other. My docs were not straight forward with anything, because everyone reacts differently, so they just provide you with a "generalized" view of what to expect.
I hope you have a good support team behind you...it's terribly important right now. Good luck and keep us posted!

tecara's picture
tecara
Posts: 19
Joined: Nov 2010

Your post was so full of information... thank you. I do have alot of questions but till I know what stage I'm at its all very grey right now.

I have an amazing husband and after the initial shock of it all he got very strong and supportive with nothing but positive words to say. He researched foods and went out shopping, talked to our local pharmaciest about suppliments. I know he will be my rock. My oldest lives in northern Canada, he is married with a son, I just told him tonight. My daughter is in her first year of college and away from home. So its pretty much me and my husband. But that's ok... I have alot of distant love and prayers and I can feel the energy from them.

You are so right about the statistics... they can be scary to say the least and yes they don't account for will power, power of prayer and how damn head strong I am :), thank you for that. I was starting to quote all the stats I've read and there is no point to that at all.

Should I be concerned that my GP sent me to an OB and not an oncologist to do the colposcopy? I do wanna come out fighting... and I want to get straight to the fight!!!

Thanks again so much, your knowledge is such a wonderful gift to all us scared people out here!!!

God Bless
Terri

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

You will find that even when you get staged Terri...there remain a lot of gray areas. To me, it was like stepping onto the rollercoaster ride of my life that would not stop to let me off when I'd had enough. Doctors are human, just like us, and even though they have the knowledge to choose the right treatments for us...we are all unique individuals and respond so differently.
No, you should not be concerned that your GP sent you to an OB first and not an oncologist. This is the first step in the actual staging of the ca and who knows better than an OB to know something doesn't look right and do a colposcopy to verify it is ca. A CT scan is usually the next step, cheapest of all the scans, to actually verify the size of the tumor. This is not 100% accurate, but it gives them the basics they need to determine the next step. If it appears operable, they will probably set you up with a GYN Oncologist surgeon. Then the ball really gets rolling. You acquire a radiation oncologist, a regular oncologist, possiblly a radiation oncologist for internal treatments if yours doesn't do them. Do you have good veins? If not, then placement of an infusaport may occur. Lots and lots of things will start happening very quickly. Once the treatment starts, if you receive treatment, it seems to become a never ending visit to a doctors office; radiation is 5 days a week, chemo once a week. Before you know it...the treatments are done and all those docs fade into the wall. You have 3 month follow ups that turn into 6 months, etc. To me, it felt like they were saying, "okay, we've done our part...have a nice life." It was very scary, but they are only a phone call away.
It's great that your husband is a rock for you; your going to need him. Just be wary of taking lots of supplements during treatment. Make sure all your docs know what your putting into your body, because some can alter the treatments. I used acupuncture throughout my treatment...he was a great support for me and did the best at getting rid of the nausea.
Remember, my experience may not be what unfolds for you, but as treatments go...it's a pretty routine structure.
Keep that strong will and GO OUT THERE AND FIGHT LIKE A GIRL!!
Keep us posted on your progress.
((HUGS))

tecara's picture
tecara
Posts: 19
Joined: Nov 2010

I can't thank you enough for all the very clear information. Some would say I'm thinking about this too much or too focused right now sense there is so much I don't know yet. But to me the knowledge is very comforting. Talking to others who have been there really really helps me.

You have a very valid point about the OB. I think that my GP did see something because when I first went in he was planning on doing everything, complete blood work and only ended up drawing for cholesteral. It didn't click to me at first but hindsight he probably figured doing the rest would be tanted at this point. I do have good veins... will probably need them. I have heard good things about acupuncture and will need to look around locally to see what I can find. My husband wants to do all he can at any cost, but I fear in this bad economy just what cost it will be. I do have both long and short term at my job but only 60% of my salary. It sounds like I'm going to need it...sigh.

I hope to make it thru the holidays before all this starts but if it must before then, so be it. Its my grandson's first xmas and I want it to be very special.

How are you doing now? You seem like a very strong person and I know that strength really helps get through all of this.

Thank you so much
hugssss
Terri

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

Terri,
You are NOT thinking about this too much. Knowledge is power! We all have some semblence/order to our lives which we can control. You are stepping into unknown territory and will have no control...a very scary prospect! I know it's hard, but do try to keep some humor through all this; that's what got me through it. When I went in to get my "tattoos" prior to radiation therapy (4 little dots), I tried to convince the team to do a full scale tattoo. When I was first dx, my GP and her nurse put their arms around me and cried like babies. I held them, comforted them, and ensured them not to worry, "We can do this. Let's rock and roll." They were my rock.
Your husband sound like a wonderful man...he will be your rock. It's good that you have the disability insurance...I hope you don't have to use it, but it's a nice back up plan.
Nice to hear you have good veins, they will get a workout in the next few months!
It would be nice for you to have the holidays to yourself prior to starting tx, grandkids are so great (especially since you can return them), but what they see on your scan is probably going to be the determining factors. For me, I couldn't start the ball rolling soon enough. I'm a fighter and the sooner the tx started, the happier I was. I am an RN and had worked side-by-side with a few of the docs that were to become my doc. Instead of waiting for others to call them with a referral...I made the calls myself. This worked to my advantage at times, not so much at other times. I'd cared for many cancer patients in different stages of the disease, so I had some idea of what to expect.
I'm hanging in there now. I have good days and bad days. Most of the side effects of tx have waned, but several lingere and define my new "normal." It's acceptable, because I am still here to talk about it. Everyday you wake up and can put a smile on someone else's face is a good day!
Take care and keep me updated!

tecara's picture
tecara
Posts: 19
Joined: Nov 2010

I am much like you, I'm so ready to fight, lets get this party started.

One thing I am finding already is that I am getting two kinds of reactions from people. Some people just won't talk even avoid talking to me or they are matter-a-fact about it "oh that's nothing, it cures easy" I tried to talk to a friend about chemo and radiation and hysto and she said I was getting carried away, that they didn't do all that, maybe a leep and it would be all gone.... Another friend said, its just abnormal cells.. I looked at her and said no, I'm past the abnormal stage my dear, I have cancer. She looked so shocked and terrified. She was one of the first to find out, but was like at that moment it clicked in.

Tomorrow is the first of the specialist... fingers crossed... still that little part of me that hopes they will say it was all a mistake.

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

Keeping my fingers crossed for you today Terri. Hope this has been caught really early and you are only exposed to the simplist treatments.
I know exactly what your saying as far as people reactions. You have those that want to cry and coddle you, those that get angry and want to fight for you, and there's those that will run away ... as if you are contagious. The runners really bothered me at first, but in reality, this whole thing showed me who my real friends were.
This board is a great place to visit to exchange thoughts, make friends, ask questions. We've been through this and know what your experiencing to an extent. There are not too mnay of us active, but some that stop by to read the board and bop in for a quick minute now and then.
Good luck today!

tecara's picture
tecara
Posts: 19
Joined: Nov 2010

Ok just got back from the specialist. I loved the guy, was very knowledgeable and patient and spent lots of time talking with us. He did do a colposcopy today but said from his experience and what he saw he did not feel that the cancer has spread beyond the cervix itself. Its still cancer but still... It was great news. He is scheduling me for a cold knife cone biopsy in the next couple of weeks. Said best case scenario is he gets it all doing that procedure and NO HYST. Needless to say I'm on cloud 9 right now. Biopsy results won't be in till early next week, but I am feeling really positive that no further cancer will be found.

Thank you so much for the thoughts and prayers!!

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

YEAH!!! That great news...hope all goes well!

tecara's picture
tecara
Posts: 19
Joined: Nov 2010

I will keep you posted and again I can't thank you enough for all your help, you truly helped me stay calm in all this. You have made a difference for me.

hugssssssss

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

I look forward to being here for you throughout this ordeal...and afterwards. Christmas miracles do happen and I have a good feeling about this one too!! Wish I could give you some info on the biopsy your talking about, but I haven't had that particular procedure. I hope someone who has stops by and can help you with that one. Keep your chin up young lady!!!
((HUGS))

tecara's picture
tecara
Posts: 19
Joined: Nov 2010

I got a call from the hospital today, set up the CKC for the 14th. I am glad to see things moving but its also still scary and overwhelming. Add to the fact my husband is having rotator cuff surgery on the 7th. I call my manager to let her know the dates, he response was that it was inconvenient for her, she had a meeting. I was speechless. no I did not change the date but she is going to make my life hell I'm sure.
Chin high
hugsssss

naggymaggie
Posts: 15
Joined: Nov 2009

I had a cone biopsy or cold knife biopsy in 2005. It was a day surgery procedure-general anesthesia and I had bleeding like a heavy period for a few days that tapered off to light bleeding for a week. I had pain medicine for cramping, lifting restrictions for a while ( they do put a few self absorbing sutures in. My path came back carcinoma insitu and the Doc though he got clear margins and that it might be curative. He actually recommended follow up paps every three months or so...but I had a bad feeling and actually asked for a hysterectomy since I was 38 unmarried with no prospects(work too much). He agreed and in January I had a complete hyst. which went very well-little pain, incision healed well but when I went back to get the staples removed I learned that it infact was invasive into the lymphatic/vascular tissue and still in the cervix that he removed. I thank god that I listened to my "gut" knowing things were not right. I had a more radical resection a month later with lymph node and supporting tissue removed-healing was harder since I hadn't fully recovered from the first. But I did well till a chance test in 2008 showed elevated liver enzymes-ct scan didn't show anything but a fatty liver but again that gut feeling made me wonder. I nagged and got a PET which showed activity in the vaginal cuff-I had had a pap one month before that showed nothing and I wouldn't have been seen again for 6 months. A biopsy after the PET showed cancer again so I had radiation,25 external and 3 internal. That was completed in Feb, I am feeling nervous about my next appt/pap on the 10th. I always do, even now 5 years after my initial diagnosis. I am sorry that you have to go through this. Becky is right positive thinking is so important and I really am so much stronger now in so many ways than I was 5 years ago. But please listen to your "gut". If something doesn't seem right ask about it-it is scary but I truely believe I wouldn't be here today if I didn't.

tecara's picture
tecara
Posts: 19
Joined: Nov 2010

What an amazing story Maggie!!! My gut is what led me in to the Doctor's in the first place, seems like a lifetime ago but was only 2+ wks ago. So yes I do believe in listening to it. He said as well he thinks he can get it all with this procedure. I will wait and see but if I think something isn't right I will be the first one at his door lol. Thank you for sharing your story. The CKC scares me because it is general anesthetic. but from what I understand should be back to work in a day or so.

hugs to you

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

Mag...it's so good to see you visit. How are you doing? I've recently gone through a scare and am very apprehensive waiting my up coming appt. in three months. Both MRI and ultrasound state "Appears to be a fibroid", but inconclusive...so we watch and wait. I'm 5 years post-menopausal and 2 years post rads. I shouldn't be growing fibroids, but we wait and see. Same thing with the dysplasia...watch and wait.
Terri...good that you've gotten a date so quickly. Mags correct...always listen to your gut. General anesthesia is easy...you take a big fat nap! I'm glad that someone could give you some details about the procedure. Bosses can be such a pain throughout this!
Now it's time for all of us to take a BIG DEEP BREATH....and LET IT GO. Not much else we can do.
Best wishes and thoughts to both of you. ((HUGS))

tecara's picture
tecara
Posts: 19
Joined: Nov 2010

Got the results of my colp today. The punch showed carcinoma on the outer wall of the cervix, the ECC showed severe dysplasia. Was told this was a good sign that the cancer has not gone any higher and more reason to believe the CKC will be able to remove it all. But further biopsies will be done on the tissue that is removed with the CKC. I am breathing a sigh of relief, for now at least. Got mammogram results as well today and all was normal there.

Thank you all again for all the support

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

GREAT news Terri! You'll be in my thoughts these next few weeks. Hope everything continues to go smoothly. Christmas miracles do happen :)

tecara's picture
tecara
Posts: 19
Joined: Nov 2010

Ok well that is over wasn't fun but not as bad as I feared either. Cramping is pretty bad but between the heating pad and pain killers it is bearable. Now the heard part begins... waiting for the result. Follow up with GYN on the 28th but he did say he'd call earlier if he had the results before then. Thank you so much for your support and prayers. They really do mean a lot to me. Its all in God's hands now but not going to let the waiting mess with Christmas. My youngest grand-baby's first :)

hugs and God bless
Terri

beckyracn's picture
beckyracn
Posts: 323
Joined: May 2009

Your right Terri, the hardest part is the waiting for the results. Good to hear your pushing on and not going to let it interfere with the holidays. Grandkids are great! The best part is you get to return them :)

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