Chemo or Not

grandmaof7
grandmaof7 Member Posts: 2
edited March 2014 in Uterine/Endometrial Cancer #1
Sept 2010 I(60 yrs old) was diagnosed w/uterine cancer - had a PET/CT Scan - was told no sign of cancer anywhere else(?) Had a total hysterectomy w/bilateral salpingo oophorectomy-they FOUND cancer in a fallopian tube but nothing in the lymph nodes - I was told I'm stage 3A-Now they want me to do 6 treatments of taxol/carboplatin every 3 weeks because they are NOT SURE if the cancer has gone any place else - I could be CANCER FREE...I've read so much about the side effects of chemo and chemo itself, that I'm not sure going through is the right thing to do for me - Any thoughts???

Comments

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #2
    Hello!
    I had a hysterectomy
    Hello!

    I had a hysterectomy in 2005. It was after the surgery that the pathology came back that I had cancer. After another surgery for staging, I was dx with endo adencarcinoma Grade 2 IIIa. At the staging surgery, they found nothing. Everything was clear. It was recommended that I do 6 taxol carbo as a preventative. After careful consideration and knowing that I would drive myself crazy with every pain or pinch, I decided to go ahead with the chemo. Then I had three brachytherapies about a year later. I could not do the taxol, so they gave me Gemzar. I went every two weeks for six months.

    Since then, all my CT Scans (I got one every year), then every six months, have been clean. Although I did have a slight recurrence (but it was something that was missed on initial surgery)and which didn't show up on scans, Ct OR pet, and it has been five years. I just turned 50 in June.

    It is a hard decision because I know I didn't want to do the chemo either, but they have changed a lot of things with the chemo, and I know I would have drove myself crazy worrying whether something was there. I still have a port and get it flushed every month. My recent PET Scan was clean, so I will probably have it taken out now.

    By the way, a port is great to have if you do get chemo. It saves the veins.

    I hope this helps with your decision. My best to you!

    Kathy
  • lindaprocopio
    lindaprocopio Member Posts: 1,980 Member
    #3
    Do you know the GRADE of your cancer cell type?
    Do you know if your cancer cell type is undiufferentiated or well-differentiated? Does it say anywhere on your pathology report whether this is a Grade 3 cancer cell, or does it mention Clear Cell or Papillary Serous cancer cells (both usually Grade 3 cells)? You need to factor in the GRADE of your cancer as well as the STAGE of your cancer before you make your decision. Grade 3 cancer cells are aggressive sneaky bast*rds that are known for travelling through the body in microscopic form (undetectable in this tiny form in CT scans and unreliable indicators in PET scans when this small) and setting up camp elsewhere. If your cancer is a Grade 3 one, adjuvant systemic chemo to kill the little monsters where they hide is standard practice. (Adjuvant therapy is chemo or radiation done as an EXTRA precaution, even after the cancer looks to be gone.)

    If you have a Grade 3 cancer, I would encourage you to do the chemo even if you were Stage 1a as lomg as you don't have a lot of coexisting health problems. Chemo is SO do-able, so much easier than you probably imagine. I had an infusion of Doxil chemo just this morning and feel great!
  • jmnye
    jmnye Member Posts: 14
    #4
    Nothing to fear - chemo is totally do-able
    Hi-

    I was diagnosed with Stage IIIc endometrial cancer almost 2 years ago. I did surgery, chemo, and radiation. No real side-effects from any of it. I am clean, clear, and healthy. I was so afraid of chemo because I am allergic to EVERYTHING. And, I had NO issues. It was like saline solution was going through me. Trust me, it increases your chance of survival by more than 20% - don't skip it!

    Jane
  • jazzy1
    jazzy1 Member Posts: 1,379
    #5
    jmnye said:

    Nothing to fear - chemo is totally do-able
    Hi-

    I was diagnosed with Stage IIIc endometrial cancer almost 2 years ago. I did surgery, chemo, and radiation. No real side-effects from any of it. I am clean, clear, and healthy. I was so afraid of chemo because I am allergic to EVERYTHING. And, I had NO issues. It was like saline solution was going through me. Trust me, it increases your chance of survival by more than 20% - don't skip it!

    Jane

    Ditto!
    I agree with others here....go with treatments. I was diagnosed with MMMT 3C as no cancer found outside of uterus except one lymph node in right pelvic area. I was happy as thought this would mean no treatments...well I was incorrect. Doc informed me he can only see so much of the cancer with the naked eye and other very small cancer cells could be lingering, hidden. Best advice...have chemo and radiation was my option. I had 6 rounds chemo and in middle of chemo I had 33 sessions of pelvic, external radiation. I will tell you the radiation was the worst part and have a few minor side affects today....fast bowels!!

    Chemo today is more advanced and allows us to have a somewhat normal life. It does tire us, but I'm amazed how easy it can be.

    If you don't feel comfortable with the option your doc is suggesting, plse get a 2nd opinion....most insurance co's will cover. Today I'm happy I followed my docs advice and did the treatments as no new evidence of cancer has shown on my tumor numbers we follow nor the scans....and it has been 16 mos since my last treatment.

    Come back and visit us as you'll learn from others....I did!!!
    Jan
  • nempark
    nempark Member Posts: 681
    #6
    Grandma
    Hi: The two ladies here answered your question about Chemo. I was diagnosed with Stage 1a grade 3 MMMT. Doctor told me he got everything that the naked eye could see. As a preventative measure he recommended 6 sessions of chemo. I did hear a lot of stuff about Chemo, but I did not for one moment hesitated. Linda gave you a really good idea of how the microscopic cells can escape and invade other parts of the body. So my advice is to go ahead with the chemo. As cancer patients chemo can be our friend, chemo is doable never mind what you hear about it. Best wishes. Keep in touch.
  • grandmaof7
    grandmaof7 Member Posts: 2
    #7
    THANKS
    Thank you - To everyone that responded to me - There are a lot of things that I don't know but NOW have some info as what to ask, etc. I don' know what my path reports showed, but I will find out. Next Wednesday is the day that I am scheduled to have the first round of Chemo ...I'm having my blood work done on Monday - All the best to all of you - Joanne
  • stloosandi
    stloosandi Member Posts: 9
    #8
    I, too, was told that even
    I, too, was told that even though nothing was found in lymph nodes..the oncol. felt I should begin internal radiation and then chemo. I was so upset because I did not want to hear chemo...but from what he said....it is better to err on the safe side....even if there is no cancer anywhere else..it is best to do the chemo now rather than find out it would not work later.
    So here I am after my first chemo (Jan. 13th) feeling like hell - I just happened to be one of the few who get every bad side effect (throbbing bones,joints, nausea, heartburn, dizziness, and a small tummy ache every time I try to even eat a cracker) and I really feel you need to first of all, trust your doctor, and second of all, search inside and know that only you can really say if you are up for the challenges (and as many will tell you, there are many out there who are able to handle the effects they got as each case is so different) and base it on your overall health, support network, sometimes finances(if, like me, you do not feel well enough to return to work) and your very intuition!
    I can only pray I made the right choice and I do try to keep positive, laugh once a day (well maybe day 4 I slightly grinned while wincing from bone aches) and I plan for those days ahead when I can look back and say "I did every thing I could, now what will be, will be"
    I bet you are a strong woman with those grandkids so hopeful looking to a future with you as best as you can be!
    Let me know your decision! And best of luck in anyway you decide!
    Sandi
  • stloosandi
    stloosandi Member Posts: 9
    #9
    Very bad side effects of taxol/carbo
    Hi to all out there that responded to the chemo virgin. I had my first session Jan. 13 and had the scary shortness of breath and severe back ache which had nurses rush to slow things down. Due to the horrible pain of 2 messed up IV's, I am now scheduling a port at time of next chemo. I just wondered if anyone else had severe bone and joint pain like I did on day 4 and 5? I lived with it all day until I couldn't stand no let up with ibuprofin. Called hotline and found I could take strong med that nite (which was left over from staging surgery)
    I have had all the bad side effects also like nausea (allergic to anti-nausea med for strong kind- so only have for mild nausea) and probably the resulting hearyburn was the worst. I have lost 8 lb. in a week(I am overweight so not a bad thing) but it means I am very dizzy and have an upset tummy even if I eat a cracker- need to get to john because I feel like need to evacuate bowel (but barely can each time) Sadly, as a teacher, I am feeling that with all of this lasting well over a week....I may not be able to make it back to class. Other than Tums, do any of you know how to get rid of sick tummy (not real nausea cause I actually am hungry...but scared to eat...don't want tummy ache!) Thanks!
    sandi
  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #10
    stloosandi said:

    Very bad side effects of taxol/carbo
    Hi to all out there that responded to the chemo virgin. I had my first session Jan. 13 and had the scary shortness of breath and severe back ache which had nurses rush to slow things down. Due to the horrible pain of 2 messed up IV's, I am now scheduling a port at time of next chemo. I just wondered if anyone else had severe bone and joint pain like I did on day 4 and 5? I lived with it all day until I couldn't stand no let up with ibuprofin. Called hotline and found I could take strong med that nite (which was left over from staging surgery)
    I have had all the bad side effects also like nausea (allergic to anti-nausea med for strong kind- so only have for mild nausea) and probably the resulting hearyburn was the worst. I have lost 8 lb. in a week(I am overweight so not a bad thing) but it means I am very dizzy and have an upset tummy even if I eat a cracker- need to get to john because I feel like need to evacuate bowel (but barely can each time) Sadly, as a teacher, I am feeling that with all of this lasting well over a week....I may not be able to make it back to class. Other than Tums, do any of you know how to get rid of sick tummy (not real nausea cause I actually am hungry...but scared to eat...don't want tummy ache!) Thanks!
    sandi

    Ginger Ale?
    I had a different kind of chemo than you (for breast cancer) but an upset tummy is an upset tummy and someone said to get some Ginger Ale. I did, but never drank it, so can't say it helped or it didn't. I'm sure you heard this, but try to eat enough so you won't lose too much weight. Ice cream was my best friend as were smoothies.

    Hope you can find something that works for you. My oncologist said to be sure and call with side effects, they have lots of drugs, maybe you'll be able to tolerate a different anti-nausea drug.

    Suzanne
  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #11
    stloosandi said:

    Very bad side effects of taxol/carbo
    Hi to all out there that responded to the chemo virgin. I had my first session Jan. 13 and had the scary shortness of breath and severe back ache which had nurses rush to slow things down. Due to the horrible pain of 2 messed up IV's, I am now scheduling a port at time of next chemo. I just wondered if anyone else had severe bone and joint pain like I did on day 4 and 5? I lived with it all day until I couldn't stand no let up with ibuprofin. Called hotline and found I could take strong med that nite (which was left over from staging surgery)
    I have had all the bad side effects also like nausea (allergic to anti-nausea med for strong kind- so only have for mild nausea) and probably the resulting hearyburn was the worst. I have lost 8 lb. in a week(I am overweight so not a bad thing) but it means I am very dizzy and have an upset tummy even if I eat a cracker- need to get to john because I feel like need to evacuate bowel (but barely can each time) Sadly, as a teacher, I am feeling that with all of this lasting well over a week....I may not be able to make it back to class. Other than Tums, do any of you know how to get rid of sick tummy (not real nausea cause I actually am hungry...but scared to eat...don't want tummy ache!) Thanks!
    sandi

    Sandy, Sorry to hear about
    Sandy, Sorry to hear about your side effects. I too had side effect on taxol. They switched me to gemzar.

    Did you try popsicles? sometimes that helps.

    Hope it starts to level out for you!

    Kathy
  • minniejan
    minniejan Member Posts: 88
    #12
    Kaleena said:

    Sandy, Sorry to hear about
    Sandy, Sorry to hear about your side effects. I too had side effect on taxol. They switched me to gemzar.

    Did you try popsicles? sometimes that helps.

    Hope it starts to level out for you!

    Kathy

    chemo or not
    Sorry to hear you diagnosis.

    I have stage 1 grade 3 UPCS and will start three rounds of chemo (carboplatin and taxil) and brachytherapy radiation (3 treatments) in February. I was told due to the grade of the cancer that it is pretty standard to have some chemo and radiation. To be honest, I never even thought to turn it down. My daughter is a chemo nurse and keeps stressing that symptoms are going to be rough, but for everyone are different. I will continue to monitor this site, it is great, for tips on side effects and such. Thanks to everyone here, what a great group.
  • Songflower
    Songflower Member Posts: 608
    #13
    stloosandi said:

    Very bad side effects of taxol/carbo
    Hi to all out there that responded to the chemo virgin. I had my first session Jan. 13 and had the scary shortness of breath and severe back ache which had nurses rush to slow things down. Due to the horrible pain of 2 messed up IV's, I am now scheduling a port at time of next chemo. I just wondered if anyone else had severe bone and joint pain like I did on day 4 and 5? I lived with it all day until I couldn't stand no let up with ibuprofin. Called hotline and found I could take strong med that nite (which was left over from staging surgery)
    I have had all the bad side effects also like nausea (allergic to anti-nausea med for strong kind- so only have for mild nausea) and probably the resulting hearyburn was the worst. I have lost 8 lb. in a week(I am overweight so not a bad thing) but it means I am very dizzy and have an upset tummy even if I eat a cracker- need to get to john because I feel like need to evacuate bowel (but barely can each time) Sadly, as a teacher, I am feeling that with all of this lasting well over a week....I may not be able to make it back to class. Other than Tums, do any of you know how to get rid of sick tummy (not real nausea cause I actually am hungry...but scared to eat...don't want tummy ache!) Thanks!
    sandi

    Dear Sandi,

    I had a reaction to taxol which sounds alot like yours. It is very common and lasted a week. I did take it anyway. I had to take the day before prep with steroids and then they gave them IV and then they gave them oral each morning for a week. I had so much pain in my muscles I had to take pain meds; but she had me start the pain meds 12 hours before the pain started. It got me through I must say. I know the pain; it's not an achiness but you feel like someone beat you up with a bat. The steroids really help. Talk to your Doctor about this; most of the time it's doable; sometimes they have to change medications. I shiver just remembering it. But you can do it with some wise monitoring. I always found the pain left about day 8.

    Any more questions let me know. Don't feel like a flunky because you didn't breeze through. It can be managed most of the time.
    Love,
    Diane

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