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Cervical Cancer

eleanorr
Posts: 5
Joined: Mar 2010

My daughter was diagnosed with cervical cancer and had a radical hysterectomy one week ago today. The did not remove her ovaries nor did they move them out of the way in case she would have needed radiation. The DR. called her today to tell her that now since he received the pathology report he feels to be on the safe side that she should have radiation. It is not in her lymp nodes but the tumor was 4mm and that NOW has him worried. I have been reading the effects of radiation and am scared to death for her. She is only 34 and SCARED out of her MIND. My brother-in-law just passed one month ago from stage 4 lung cancer and I saw what radiation did to him! Please,does anyone have any insights with this. She is seeing a Dr. Dunton in Lackenau Hospital in Phila. Do u receive the same treatment from DR. To Dr. Is the protocol the same for administrating radiation for cervical cancer? Would chemo be a better way to go? If that is even an option.

Eleanorr

Cheft
Posts: 5
Joined: Oct 2009

Eleanorr, I am sorry to hear about your daughter's diagnosis and pray for her full recovery. What Stage of cancer is she? Usually with a 4cm tumor you are Stage 1a2 or 1b1. Usually radiation protocol starts with Stage 1b1 or higher. But it really depends on the pathology reports and what the margins indicate, how deep the turor is, how close the tumor is to the bladder, colon, was there lymph node involvement...etc. I guess the best advice would be to get a copy of the pathology report from the surgery and seek a second option or really discuss this with your daughter's current physician. Regarding the overaries, it's too bad that the doctor did not move them out of the radiation field when he was performing the radical hysterectomy and I'm not certain what the procedure is for moving them now--can it be done labroscopicly (sp)? Anyway, I was diagnosed stage 1b2 in September 2009. My tumor, according to my PetScan was 5.5cm and so the tumor board recommended low-dose chemo, along with five weeks external radiation, as well as low-dose brachytherapy. If I would of had surgery, I still would of needed chemoradiation and so I avoided surgery. Radiation affects everyone differently. I've only been finished with treatments for three months and the only thing that I notice is that I have tightness in the hips/back/thighs and I'm trying to correct this through light exercise and stretching. But yes, radiation can cause many short-term and long-term affects, but most are very manageable and people can live with them. Again, you need to talk with your doctors and understand the possibility of a recurrence, which would be more difficult than dealing with radiation side affects. It bothers me that I could not have surgery and that radiation was my only option to destroy the tumor. If I were stage 1b1 or 1b2 and elegible for surgery, I would of gone ahead with radiation and chemo as a precaution. But your daughter needs to get all the facts and make the best decision for herself. I wish you and your daughter all the best. Take care.

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

Eleanorr,
I concur with Cheft. Each case is very individualized and treated as such. I am so sorry to hear that your daughter is going through this; especially at such a young age. Encourage your daughter to ask lots of questions. If she's not comfortable with the answers, there's always the option of a second opinion. I had both chemo and internal/external radiation and have not been as lucky with the side effects from the treatments. It's been hard for me to accept my new 'normal', but things are getting better with time. Wishing you all the best with the journey ahead for both of you.

eleanorr
Posts: 5
Joined: Mar 2010

I want to thank both of you for your response. Where did you have the radiation? It's so funny that right after the surgery he was so positive that everything was fine and that she would not need radiation. There must have been more in that pathology report. I am hoping I can get my daughter connected with you girls so that she can have someone to talk to about her feelings. Someone who has gone what she is going to go through.

The Dr. told her without the radiation the cancer will come back. I wonder if the cancer will come back with the radiation. They actually only told her she was stage 1. They never went into specific stages. If I were to guess I would say 1b2 since the lesion was over 4cm. He also talks about a tumor. I wonder if the tumor and lesion are two separate things or one in the same.

We are going back to Lankenau in Phila in two weeks. She sees Dr. Dunton. Where did you girls go? What about the cancer treatment centers of America. Any luck with them.

Did you have a nutritionist work with you also.

I feel so much better to have found you.

Thank you

aimatron
Posts: 1
Joined: Mar 2010

I'm not going to lie - radiation is not fun, but now that it's over, I realize it could have been much worse. I was diagnosed with 1b1 last year (at the age of 25). My doctors wanted to spare me from radiation, so they took out most of the lymph nodes in my pelvis, thinking that would hedge against possible spreading through the lymph system. After my surgery, they reevaluated my treatment and decided that it would be safer to go ahead with the standard chemo/radiation. I had 6 weeks external radiation with chemo (cisplatin and cetuximab) and 5 brachy sessions. My worst side effects have been with my digestive system - but everyone is different, so she may not have any problems like that.

I went to the University of VA hospital for my treatment and have been very pleased with my care. Like the others said, ask a ton of questions. Also, encourage her to tell her doctors exactly how she's feeling. Sometimes I would hold back because I didn't want to sound whiny, but I realize now that it's much better to try and head off certain side effects in advance (especially radiation proctitis...don't let that one get out of hand!).

A nutritionist is a good idea. I had trouble with my appetite towards the end of treatment and ended up losing a lot of weight, but at that point, they just encouraged me to eat whatever I could. Looking back, I wish I had done more research on nutrition before everything started (once you're in the throes of treatment, you're too tired to care). Now I avoid sugars and grains, and I've never felt better - I always wonder if I would have fared better using that kind of "clean" diet before and during treatment.

And speaking of being tired - I always felt pretty groggy after treatment, so tell her to set aside time to rest right after. Tell her to exercise/stay active for as long as she can into treatment. At some point, it'll be harder to do that, and the longer she stays inactive, the harder it will be to bounce back afterward.

I wish you and your daughter the best during all of this - my mom was my primary caregiver during treatment. I don't know how I would have survived if she hadn't been there.

seables
Posts: 1
Joined: May 2010

I was diagnosed with 1b1 6 weeks ago. I am having a radical modified hysterectomy next week. My doctor hasn't mentioned anything about Chemo or Radiation after. I keep reading about all of these women that still do Chemo and/or radiation after surgery even when there is no lymphnode or vessel involvment. I am confused. Did they realized that yours was something more after your surgery? Why did they suggest Chemo/Radiation after surgery?

Sarah

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

seables,
you'll find a lot of women that have gone through what you are at this time on the uterine board and can answer most of your questions. Sorry that you've had to join the ranks. And yes, depending on what they find during surgery makes a difference in whether they suggest follow up with chemo/rads. Good luck on your journey.

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

I had my treatments in upstate NY. I've heard from people who've gone to Cancer Treatment Centers of America and they were very pleased. The offer a wide variety of complimentary branches to go along with convention treatment.
A tumor and lesion are one and the same. Different docs call it different things.
I did not work with a nutritionist...started losing weight rapidly, but stayed 1# above the intervention stage. And I ate whatever sounded good at the moment. I'm not sure if your taste buds are affected with just radiation, but with chemorads mine really changed. I survived on peaches and cottage cheese for the most part...it worked for me.
Tell your daughter to accept whatever is offered to her. She will not be sorry, cause support from every angle is a wonderful tool to have!

eleanorr
Posts: 5
Joined: Mar 2010

It's funny that you say that you survived on peaches. My father in law and brother in law both ate peaches when they were going through treatment

chrisintaylor
Posts: 4
Joined: May 2010

Pineapple cut up and sucked on got the horrible metal mouth away for awhile. I froze little chunks and used them when I couldnt stand the taste in my mouth!

Cheft
Posts: 5
Joined: Oct 2009

Elannorr, I was treated at Stanford University Hospital in the Bay Area, Northern, CA. I was very pleased with my radiologist and his recommended care. He explained all of the short-term and long-term side affects that I may or may not experience. Some scared the hell out of me and others I thought that I could live with; however, I had no choice because if I did nothing then I would be really sick right now. Other than the thightness in my hips/muscles, and some minor bowel issues, I feel really good.

You really need to understand the stage of the cancer and how it is broken down in substages as 1a or 1b or 2a and so on. If your doctor feels that he thinks that the cancer will come back without further treatment then he needs to explain it to you. I belong to another cervical cancer discussion board (www.inspire.com) and there is a woman who was diagnosed with 1b1 in September and she had a radical hysterectomy only. She did not pursue the recommended chemo/radiation and now has had a recurrence and is going through a really tough time with chemo, additional surgery and radiation. I'm not saying that this will happen to your daughter, but if your doctor feels that there could be a recurrence without additional treatment then your daughter really needs to understand why so that she can make a decision that she will feel good about and that she can live with. Again, everyone is different. There is no rhyme or reason with cancer and yes, cancer can even come back even after radiation. I wanted surgery so bad in September and was emotionally crushed when my doctors said that they did not want to perform surgery and that chemoradiation was what they recommended. It took me awhile to understand why they recommnded this strategy, but when I did, I never looked back and feel comfortable with the options presented to me and the decision I made. However, I still worry about recurrence, that's only natural and I will for quite sometime, probably for the rest of my life.

Regarding nutrition, before I started treatments I met with the nutritionist at Stanford's Cancer Center and they really didn't have that much to offer me. Chemo drugs cause constipation and external radiation causes diahrrea. So Monday and Tuesday I was constipated and Thursday through Sunday I had diahrrea. Again, everyone is different and so I ate whatever felt right at the time to get through the systoms. However, when I finished treatment on December 1st, I changed my diet completely after reading several books on cancer and nutrition. I eat no meat, fish, dairy, eggs, sugar, caffiene, alcohol, or nothing processed. Everything I eat is organic, fresh veges, fruits, whole grains, etc. and drink lots of water. I don't know if what I'm doing will keep my cancer away, but I've never felt or looked better and so I plan to eat this way for good. It's the only thing that I can do to feel like I'm in control of the cancer/situation.

I don't have any experience with Cancer Centers of America but I understand that they have a more conventional/alternative treatment approach to cancer. There's also the Block Cancer Center that I've heard good things about. I chose Stanford because it's 20 miles from my house and it's listed as one of the top 10 cancer centers in the United States. However, I was disappointed with their approach with regards to nutrition, etc. and if I unfortunately do have a recurrence, I'm not certain if I would go back there or seek treatment elsewhere. It was convenient, but I think I would look for a more combined approach to treating the disease. However, I truly loved my radiologist and was so thankful that he was the individual who set up my treatment plan; however, he has since retired and so I just see my gyn oncologist for follow up.

Please keep us posted after you and your daughter meet with her doctor in a couple of weeks. And yes, I'll be happy to talk to her about anything. If you go to www.inspire.com, and become a member, you can "friend" someone at chat in private without the entire world knowing what you are saying. I'd be happy to discuss any questions/concerns that she has about chemo/radiation as it relates to my situation. Again, she needs to remember that everyone handles treatments differently. I wish her all the best!

eleanorr
Posts: 5
Joined: Mar 2010

Thank you for all of that information. I have spent the day researching radiation therapy. I came across proton radiation therapy instead of the traditional therapy. They say that it does less damage to tissue and organs close to the cancer site. Has anyone had that type of radiation?

conniemae2
Posts: 1
Joined: May 2010

i was diagnosed with stage 1 of cervical cancer im 22years old. i can't get any treatment because they told me i wasn't on medicaid and i don't have the money to get it done..so i guess i won't be able to have kids =(

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

conniemae,
There are many options out there for individuals without money/insurance. Try contacting a social worker at your local hospital or even her on CSN. Don't give up...there is help out there...you just have to go looking for it.
Good luck on your journey and don't take NO for an answer!!
((HUGS))

Hgwybound
Posts: 1
Joined: May 2010

Eleanorr, my sister in law is undergoing all this now as we speak. she had good outcome on the first tumor. however it is possible that even with a combination of radiation and chemo the tumor can hold live cells and branch off. your daughter's tumor is smaller than what my sister in law has had to deal with so her outcome sounds to be more promising. give it a chance. she maybe a lil sick from the treatment it all depends on the person. proton radiation is what she had.

asall1
Posts: 1
Joined: May 2010

Hi all,
My best friend has recently been diagnosed with stage IVB cervical cancer..doc said it's too big of a tumor to operate on (8cm) and don't recommend radiation and 3 nogules in her lymph path up into her neck and behind her heart....she just wrapped up three chemo treaments they ct scanned her and say there is no evidence of disease in her lymph nodes and the tumor is 3mm.. they see three nogules in her lungs and one on her liver that glowed on the scan but chemo doc says thats not unusual...I'm worried they're making light of it :0/

has anyone else had these types of results?..my biggest fear is that the cancer has morphed itself to look like normal cells and that it's going to have run rancid in her by the time they re-scan her in three months. Doc says to do the next three rounds of schedules chemo to be safe...

IDK, am I being to pesimistic here and should I just be looking at this as a miracle?..I just want to be the best friend I can be for whatever happens

lesleyGH
Posts: 1
Joined: Jun 2010

Hi Eleanorr,
Sorry to hear about your daughter.I had stage 2 cervical cancer 18yrs ago found by accident during hystarectomy, I was 39.I had internal and external radiotherapy treatment as a backup.I strongly advise she asks loads of questions no matter how trivial she may think they are.I didn't, guess I was in shock and trusted our medical profession here in the UK. I don't remember anything about possible late side effects which I feel I now have but can't find answers to.Hence finding this website.Hope all is well.
Lesley...in the UK

BJK
Posts: 2
Joined: Jul 2010

Hi Everyone
I'm new to this site and have read your posts with great interest. I am 60 years old and had a radical hysterectomy on 4/27 and was subsequently diagnosed with stage III cervical cancer. I began a course of "double dose" cisplatin that lasted for two sessions, until a tumor began to grow again on the cuff of my vagina. I was switched immediately to weekly chemo + daily external radiation. I had no idea until I read your posts about scarring, GI problems, etc, resulting from radiation. I guess my docs are not great communicators. I am in a relatively new relationship and am worried that sex will not be a future option and would appreciate hearing more about that. I would like to also hear from others who are/were at stage III or IVa. Thanks....BJK Vegas

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

BJK,
Stage IVA two year survivor here...and loving life!
Docs don't tend to give out information readily...they wait until you ask. Nearing the end of your radiation treatments you should be introduced to the "dilator". Your instructed to use this everyday for ten minutes or have regular intercourse to help keep the scar tissue at bay. Has there been talk of any internal radiation treatments at this time? I went into surgery expecting to have a TAH, but they ended up just taking a bunch of lymph nodes and sewing me back up due to the extent of the ca. Now I've been told that particular surgery is not an option to me due to all the scar tissue and adhesions from the rads.
Good luck on your journey. Keep posting. There's many good women here who can offer you advice as you go through treatment.

srpshellie
Posts: 3
Joined: Dec 2009

Ive heard a lot of ppl talking about using a dialotor. My doctor never mentioned this to me. I am a almost 16mo survivor. Sex after radiation/internal radiation has been painful but bearable. Just recently its become extremly painful. Unfortunatly, I just cancelled my 3mo checkup because of fear. I know I need to reschedule asap. My brain is playing a lil game right now, dont go so you wont get bad news. I just wish I could live without the fear of recurance. Im so grateful to my doctors and nurses and appreciate life everyday, but sometimes its so hard to deal with realities. Im glad ive heard some discussions about bowl problems post radiation. I thought it was just me. I never was told there would or could be side effects like this. Dont take me wrong, im not complaining, just havin a lil down day. Im just so tired of doctors visits and port flushes and bowel issues and painful sex. I cant seem to talk to family and friends about things because they become so worried and get a lil overbearing. I know its concern, but sometimes its just nice to hear people who KNOW what you are going through talk about battles they have as well. Ok....i'll stop having a poor shellie day lol. Feel better now. Gonna make appt monday. Swear!

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