currently cancer free but Doctors still want traditional Chemo done

ryee21
ryee21 Member Posts: 21
edited November 2016 in Uterine/Endometrial Cancer #1

Hi Everyone,

Happy Thanksgiving and I hate to bother those who are in worse situations than me but I am at a loss. My story is already stated but instead of continuing on the same thread, I am hoping for your patience with me and some advice and I do know the decision is mine.

Quick note, Diagnoised with utetine cancer in March 30. I had a radicial Hysterecomy on June 13 this year.. had a pelvic wash after.  Pathology came back with Uterine Clear Cell Carsioma with Serous (med charts list something more general).  Stage 2 (b)... the grade 3, I just found out.  Three weeks ago, my pap smear came back negative again. 

Initially in late June, my surgeon sent me to John Muir to consult with Onocolgy radiation specialist and I thought this was the treatment.  However, she quickly recommend  Chemo from whatever charts Kaiser sent.  I asked if I do just RAD only, what will happen?  She said I will get a recurrance in 2 years. So back to Kaiser,  I decided to get a second opinion at Kaiser from another Onocologist.  He plainly said the cancer is gone and the chemo is for insurance.  There is a 50/50 chance of recurrance. 

Yesterday with my Onoclogist, she finally agreed on the second opinion.  There are no cancer cells found in my uterus however NO ONE knows if I have cancer cells floating into other parts.  So they want to do the standard protocol treatment for this type of cancer; 6 rounds of Taxol/Carbol and 3 rounds of RAD; even being cancer free to date. There will be no markers to check because none of my lymph nodes are affected. Of course, they will monitor my blood and my other illnesses which includes a weak immune system, a bad liver, TN and eye virus, etc..  The treatment brings it an addditional 25% of non recurrence.  

I do find it hard to make a this decision becuause the chemo is agressive and I heard of Naturpathic, Alakline Diet and clinics like Issel Institue and Burzynski Clinics who had and believes cancer can be treated through the balancing of PH level in our biology and they have medication.  HAVE anyone been in my shoes or been to any of these Institutes??  Do you know if anything else will work?  AGAIN, I am sorry to bother everyone with this very long message, knowing others have it worse, but I don't know how to determine if Kaiser is correct. Also excuse any grammatical errors, I am nearly blind in one eye.  God Bless ALL!

Thanks Ronnie

 

Comments

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    edited November 2016 #2
    No problem

    This Is the place to come when you have concerns or just need to vent.  Sometimes just writing helps sort thing out.  Cancer doesn't take a holiday.  It is those sneaky cancer cells floating around that cause the problems later on.  Each of us has to make the decision as to what treatment we want according to,our beliefs and needs.  I followed the tradition route with the sandwich plan and I am glad that I treated this beast as aggressively as possible and still am.  It is not going to take me down without one heck of a fight.  I try to,eat healthy, but find it hard sometimes, because my,appitite isn't aways very good. I am on immunotherapy now and so far it seems to,be,working with few side effects.  One note about chemo. ... it is harsh, but very doable for most.

    Hugs and prayers, Lou Ann

  • EZLiving66
    EZLiving66 Member Posts: 1,483 Member
    edited November 2016 #3
    Ronnie, I have the same

    Ronnie, I have the same diagnosis as you - Stage II, Grade 3 UPSC.  My oncologist gave me the same odds - 50-50 if I don't do anything beyond the surgery; 80-90% with six chemos (he did NOT recommend radiation as a frontline treatment).  I made it through three chemos and although I'm glad I made it that far, I would never have Carboplatin/Taxotere chemo again.  That being said, some people like Lou Ann worked while having her chemo.  The only way I could have worked was if the job entailed lying on the floor in terrible pain barfing my guts out.  

    You're the only one who can decide.  I've been here a little over a year and I've seen some women die who had treatment and others, still living, who didn't.  I truly believe it's a crap shoot.

    Good luck with your treatment!!

    Love,

    Eldri

  • Soup52
    Soup52 Member Posts: 908 Member
    #4
    I also have a similar staging

    I also have a similar staging and diagnosis. I went with the full treatment of surgery, radiation both internal and external, and 6 carbo taxol. After one year I am currently clear. I know it's a hard decision. For me I wanted to do everything I could to try to beat the beast. Best of luck and prayers for you in making a decision.

  • MAbound
    MAbound Member Posts: 1,168 Member
    #5
    aggressive uterine cancer

    The thing to bear in mind when deciding about treatment is that radiation only treats what its aimed at wherease chemo treats systemically. It has the best chance of getting those unseeable microscopic cells before they spread and grow. You have some unique special circumstances, so I get where you are having such a hard time considering your doctors recommendations. 

    I'm going to go out on a limb here and give you a straight opinion that you can ignore or think about as you choose. If I were in your shoes with this very aggressive type of uterine cancer and as open to naturopathic medicine as you seem to be, I'd go the complementary medicine approach and use both the chemo and naturopathic medicine in concert with each other. I'd have a hard time living with this wondering which side of the 50-50 chance I'd be on and would sleep better knowing I did the best for myself fighting such a monster as aggressively as its attacking me. You might not be able to get through it all, but at least you will have done all that you could.

    Most tend to think of chemo as a poison, but really it's a healing medicine and using what integrative medicine has to offer with that will hopefully make it easier for you to get through chemo and will help you to get your body in the best place it can be to beat back any future recurrances.

    I know what an emotional struggle it can be to be faced with having to make such a difficult decision. It's scary no matter what you decide to do. Best wishes and good luck whatever path you chose, I'll be praying for you.

  • ryee21
    ryee21 Member Posts: 21
    #6
    EZLiving66 said:

    Ronnie, I have the same

    Ronnie, I have the same diagnosis as you - Stage II, Grade 3 UPSC.  My oncologist gave me the same odds - 50-50 if I don't do anything beyond the surgery; 80-90% with six chemos (he did NOT recommend radiation as a frontline treatment).  I made it through three chemos and although I'm glad I made it that far, I would never have Carboplatin/Taxotere chemo again.  That being said, some people like Lou Ann worked while having her chemo.  The only way I could have worked was if the job entailed lying on the floor in terrible pain barfing my guts out.  

    You're the only one who can decide.  I've been here a little over a year and I've seen some women die who had treatment and others, still living, who didn't.  I truly believe it's a crap shoot.

    Good luck with your treatment!!

    Love,

    Eldri

    Wow- exactly the same!  I

    Wow- exactly the same!  I hear you about working.. no way for me.  I barely made it thourgh the radiical H. This is a tough choice.  What made you do it?  I too believe it is a crap shoot.  I am not physically strong when it comes to meds. I changed my eating i.e., alkaline diet, no sugar, no carbs. no meat, etc. since. One thing I don't get is my Onc said, I am reaching 6 months indicating it miight be too late. I don't like fear as the driver and I don't understand why she would said and not bother to explain clearly. Beleive me I asked.   I have another appt tomorrow with the surgeon to talk to me again to tell me taxal/carbo isn't hard. hm...   Eldri, do you think the chemo helped you?

    Love, Ronnie

  • ryee21
    ryee21 Member Posts: 21
    #7
    thank u all in taking time to answer...

    Thanks for sharing and MBound, you make a good point.  I will follow what is in my heart if I can separate it from the fear.

    love u all and so so grateful for your opinions.

    Ronnie <3

  • Editgrl
    Editgrl Member Posts: 903 Member
    #8
    Hard decision

    One of the toughest things about cancer is all the decisions we are called upon to make, even though we are not the experts.  I am totally in favor of a complementary approach.  I figure the more weapons I have in my arsenal, the better. I had the 6 rounds of carbo and taxol, and with the use of a few supplements, I got through it with relatively minor side effects.  That being said, everyone reacts to chemo differently, and there's really no way to predict how your body will respond.  

    You mentioned that there are no markers to check.  Did you ever have a CA-125 test?  Though not always reliable, it is often done to detect cancer and/or recurrence.  For some women, it is a good indicator and for some it is not, but you might want to ask about it.

    If you are interested in the naturopathic/complementary approach, I would suggest connecting with a naturopathic oncologist in your area.  Here's a link to board-certified ND's nationwide:  http://www.fabno.org/membership.html

    One final thought:  I urge you to operate from a position of hope and not fear.  Not fear of chemo nor fear of cancer, but hope for your best chance of healing.  We all have to make the decisions that we are most comfortable with and that are right for us, not anybody else, including our doctors.

  • derMaus
    derMaus Member Posts: 558 Member
    edited November 2016 #9
    MAbound said:

    aggressive uterine cancer

    The thing to bear in mind when deciding about treatment is that radiation only treats what its aimed at wherease chemo treats systemically. It has the best chance of getting those unseeable microscopic cells before they spread and grow. You have some unique special circumstances, so I get where you are having such a hard time considering your doctors recommendations. 

    I'm going to go out on a limb here and give you a straight opinion that you can ignore or think about as you choose. If I were in your shoes with this very aggressive type of uterine cancer and as open to naturopathic medicine as you seem to be, I'd go the complementary medicine approach and use both the chemo and naturopathic medicine in concert with each other. I'd have a hard time living with this wondering which side of the 50-50 chance I'd be on and would sleep better knowing I did the best for myself fighting such a monster as aggressively as its attacking me. You might not be able to get through it all, but at least you will have done all that you could.

    Most tend to think of chemo as a poison, but really it's a healing medicine and using what integrative medicine has to offer with that will hopefully make it easier for you to get through chemo and will help you to get your body in the best place it can be to beat back any future recurrances.

    I know what an emotional struggle it can be to be faced with having to make such a difficult decision. It's scary no matter what you decide to do. Best wishes and good luck whatever path you chose, I'll be praying for you.

    Combo Package

    I think this is a good answer. I will be facing the same choices shortly and, while nobody ever wakes up in the morning thinking "Hey ! Chemo sounds like fun today!", I concur that it's strong medicine for a strong disease - and I want the strongest push-back I can get. I've had friends tolerate chemo very well (hair loss aside), so while I don't relish the idea I've also seen people live relatively normal lives while undergoing treatment. Regarding the naturopathic part, I just learned about it last week and followed Editgirl's link to find a local practitioner. This board is the best for resources!

  • EZLiving66
    EZLiving66 Member Posts: 1,483 Member
    #10
    ryee21 said:

    Wow- exactly the same!  I

    Wow- exactly the same!  I hear you about working.. no way for me.  I barely made it thourgh the radiical H. This is a tough choice.  What made you do it?  I too believe it is a crap shoot.  I am not physically strong when it comes to meds. I changed my eating i.e., alkaline diet, no sugar, no carbs. no meat, etc. since. One thing I don't get is my Onc said, I am reaching 6 months indicating it miight be too late. I don't like fear as the driver and I don't understand why she would said and not bother to explain clearly. Beleive me I asked.   I have another appt tomorrow with the surgeon to talk to me again to tell me taxal/carbo isn't hard. hm...   Eldri, do you think the chemo helped you?

    Love, Ronnie

    Only time will tell, Ronnie.

    Only time will tell, Ronnie.  If, in five years, I'm still cancer free, yup, then it worked.  If it comes back, then nope, it didn't and I had to live with all the long-lasting side effects of the chemo.  

    Love,

    Eldri

  • ryee21
    ryee21 Member Posts: 21
    #11
    Editgrl said:

    Hard decision

    One of the toughest things about cancer is all the decisions we are called upon to make, even though we are not the experts.  I am totally in favor of a complementary approach.  I figure the more weapons I have in my arsenal, the better. I had the 6 rounds of carbo and taxol, and with the use of a few supplements, I got through it with relatively minor side effects.  That being said, everyone reacts to chemo differently, and there's really no way to predict how your body will respond.  

    You mentioned that there are no markers to check.  Did you ever have a CA-125 test?  Though not always reliable, it is often done to detect cancer and/or recurrence.  For some women, it is a good indicator and for some it is not, but you might want to ask about it.

    If you are interested in the naturopathic/complementary approach, I would suggest connecting with a naturopathic oncologist in your area.  Here's a link to board-certified ND's nationwide:  http://www.fabno.org/membership.html

    One final thought:  I urge you to operate from a position of hope and not fear.  Not fear of chemo nor fear of cancer, but hope for your best chance of healing.  We all have to make the decisions that we are most comfortable with and that are right for us, not anybody else, including our doctors.

    Really trying to... I don't know if it is fear or I just don't trust the  process.   Nope, Kaiser never mentioned that test.  When they open back on monday, I will ask them. My ONC OB (surgeon) said since none of my lympth nodes were affected, there isn't a way to check if I have any cancer cells floating in me; ergo, the protocol treatment for those in my stage and grade.   I asked another ONC the same question, and his response was, in order to know, I  would have to biospy me into little pieces to find it.  

    Also what led to my doubts for chemo, I met a woman who had the same issues as me..uterine cancer only she said had something called "small cell"; she was 50/50, had a Hysterectomy, no lymph nodes affected and her ONC said her type of C floats  I don't remember what chemo was recommmended for her but I know I mentioned taxol/carbo and she acknowledged it was similiar but one different.. She opted not to do the chemo but  instead did radical juicing, changed her diet, i.e., Alakaline Diet.  It has been over 10 years for her.  I know it is silly to base things on one person but I also searched the Internet and found info on what she said and more. Who knows?

    The doctors, Eldri are right, no one knows, it is a crap shoot.

     Ronnie

  • Scotgirl
    Scotgirl Member Posts: 31
    #12
    Go with your gut, there are no guarantees

    i think you have to be informed about your utype of cancer and the recommended treatments. You must be your own advocate because remember your medical oncologist is focused on the goal of destroying the cancer using the standard protocol at almost all costs. For the most part they are geared to help you get through the treatments by managing the customary nausea, fatigue, constipation, diarrhea mouth sores, chemo rashes, etc. but when it comes to more serious side affects like neuropathy, hearing loss, skin rashes and high BP, they will recommend you see your specialists and then you are own to find resolution to any long term issues. Since my chemo started and I am only on #2 of 6 Carbo/taxol, I have made two visits to my ENT/Audiologist for high pitch hearing loss (at the bottom of the side affects list), I have to see my dermatologist for the burn like chemo rash on my arms, hands, legs and face, plus I now have to see my cardiologist because my BP and Pulse are both through the roof but they still plan on chemo #3 anyway this Tuesday. After a very long discussion this past Friday, she has agreed to dial back the taxol by 25% to see if it helps with the neuropothy which is already pretty bad and will be long term. It is up to me to cry "uncle" or they will continue. I also had no cancer to target, chemo is strictly an insurance policy with no guarantees. I was grade 3, stage 1 with cancer contained in the endometrial lining with no myometrium invasion, had a radical hysterectomy, all lymph nodes (3) removed were negative and the post surgical wash was negative, so I had the best case scenario. The caveat being it is clear cell which is extremely rare and aggressive. The recurrence rate is high so they treat it using the same protocol as the aggressive cancers. 3 brachy therapys was a given and I agreed to the chemo but am finding it difficult to go forward. It is personal but I am now weighing quantity versus quality, it is tough that as a patient I have to make this decision because of the lack of data on "clear cell" cancer. So go with your gut, but be smart not fearful, no doctor will give you guarantees.

     

  • lieust
    lieust Member Posts: 1
    #13
    Scotgirl said:

    Go with your gut, there are no guarantees

    i think you have to be informed about your utype of cancer and the recommended treatments. You must be your own advocate because remember your medical oncologist is focused on the goal of destroying the cancer using the standard protocol at almost all costs. For the most part they are geared to help you get through the treatments by managing the customary nausea, fatigue, constipation, diarrhea mouth sores, chemo rashes, etc. but when it comes to more serious side affects like neuropathy, hearing loss, skin rashes and high BP, they will recommend you see your specialists and then you are own to find resolution to any long term issues. Since my chemo started and I am only on #2 of 6 Carbo/taxol, I have made two visits to my ENT/Audiologist for high pitch hearing loss (at the bottom of the side affects list), I have to see my dermatologist for the burn like chemo rash on my arms, hands, legs and face, plus I now have to see my cardiologist because my BP and Pulse are both through the roof but they still plan on chemo #3 anyway this Tuesday. After a very long discussion this past Friday, she has agreed to dial back the taxol by 25% to see if it helps with the neuropothy which is already pretty bad and will be long term. It is up to me to cry "uncle" or they will continue. I also had no cancer to target, chemo is strictly an insurance policy with no guarantees. I was grade 3, stage 1 with cancer contained in the endometrial lining with no myometrium invasion, had a radical hysterectomy, all lymph nodes (3) removed were negative and the post surgical wash was negative, so I had the best case scenario. The caveat being it is clear cell which is extremely rare and aggressive. The recurrence rate is high so they treat it using the same protocol as the aggressive cancers. 3 brachy therapys was a given and I agreed to the chemo but am finding it difficult to go forward. It is personal but I am now weighing quantity versus quality, it is tough that as a patient I have to make this decision because of the lack of data on "clear cell" cancer. So go with your gut, but be smart not fearful, no doctor will give you guarantees.

     

    Uterine clear cell !A

    My wife has the same diagnosis as yours. She is scheduled to have Chemo in a few weeks. She is 66 years old. 

     

    Praying that you will always be cancer free and have a gret life. 

     

     

  • Kvdyson
    Kvdyson Member Posts: 790 Member
    #14
    lieust - I am sorry to hear

    lieust - I am sorry to hear of your wife's diagnosis. Thank you for being by her side during this scary time. Please let us know how we can help you. You may even want to start a new post so that you get more responses (it can be tricky to follow posts within posts). Good luck to her (and you). Kim

  • DottieDean
    DottieDean Member Posts: 36
    #15
    Kvdyson said:

    lieust - I am sorry to hear

    lieust - I am sorry to hear of your wife's diagnosis. Thank you for being by her side during this scary time. Please let us know how we can help you. You may even want to start a new post so that you get more responses (it can be tricky to follow posts within posts). Good luck to her (and you). Kim

    I am finding it difficult to

    I am finding it difficult to get through these posts - some are very old.  You seem to be here a lot.  I see my oncologist Tuesday and would like to have some idea of what to expect.  I am struggling emotionally, force myself to eat and at times just seem to zoom off somewhere else.  My husband and children are worried about me and I have feelings of hopelessness.  If you can give me some guidance it would be appreciated.

  • Nellasing
    Nellasing Member Posts: 528 Member
    #16
    DottieDean said:

    I am finding it difficult to

    I am finding it difficult to get through these posts - some are very old.  You seem to be here a lot.  I see my oncologist Tuesday and would like to have some idea of what to expect.  I am struggling emotionally, force myself to eat and at times just seem to zoom off somewhere else.  My husband and children are worried about me and I have feelings of hopelessness.  If you can give me some guidance it would be appreciated.

    Are you referring to Kvdyson?

    She is on here quite often but you can send her a private message- if you click on her picture it will take you to her profile and where it says contact you should be able to send her a message.  Hope that helps- please don't feel hopeless you are going to have a plan soon and be in attack mode- hang in there it does get better in that respect!  (((HUGS)))

  • Kvdyson
    Kvdyson Member Posts: 790 Member
    #17
    DottieDean said:

    I am finding it difficult to

    I am finding it difficult to get through these posts - some are very old.  You seem to be here a lot.  I see my oncologist Tuesday and would like to have some idea of what to expect.  I am struggling emotionally, force myself to eat and at times just seem to zoom off somewhere else.  My husband and children are worried about me and I have feelings of hopelessness.  If you can give me some guidance it would be appreciated.

    DottieDean, it can be hard to

    DottieDean, it can be hard to follow older posts so I would recommend that you start a new thread. That way, you can just follow that one until you get used to how this board works. I replied to another one of your posts so I hope that you see that one. If not, I'll repeat it here.

    I was diagnosed with MMMT (Malignant Mixed Müllerian Tumor) also known as CarcinSarcoma, back in September 2015. Surgery came first then chemo and external radiation. It was no fun but I am here today to tell you that it is do-able. Please do not lose hope. There are many of us who have received this very scary diagnosis and who are still around to talk about it today.

    My best advice at this early stage is to 1) get copies of all of your surgery and pathology reports, 2) take someone with you to your doctor appointments (or tape them - I did both), and 3) stay active with this (and any other) support groups you can find. Facebook has a very active MMMT support group as well.

    Please know that you are going to get through this and we will help you in whatever way we can. Keep us updated on how the appoinment goes tomorrow.

    Wishing you peace and strength, Kim

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