Did anyone question chemo or radiation treatments?

Blessed_1
Blessed_1 Member Posts: 6
in Ovarian Cancer #1
Good evening

I have been reading posts on this site for some time and searching for a discussion thread on a particular topic that I have not been able to find. Finally, I registered so I can just ask myself.

Did any of you question whether or not to follow the chemo and radiation treatments that were recommended? Did you research the side effects and toxicities before beginning treatment and look at alternatives to the standard medical recommendation?

The medical people around my situation are aghast that I am questioning them and hesitant to follow their recommendations. Is it just me?

If it matters for the purposes of responding, I had surgery in late February to remove a mass that was 27 x 23 cm (roughly the size of a basketball) that used to be my left ovary. I have Stage III C ovarian cancer and also Stage III uterine cancer. (I have ALWAYS been an over achiever. Most people would have stopped at just one.) The uterine cancer had spread to the cervix. Cancer cells were present in aortic and pelvic lymph nodes. Cancer was present in the omentum.

As I have read from afar, I have been touched by the kindness and genuine concern I have seen exhibited on the discussion boards. Thanks for any responses to my query.

Be blessed as I am blessed.

Comments

  • Gottalovelife
    Gottalovelife Member Posts: 45
    #2
    Probably should have
    When I had to get chemo I read about what they were giving me and the side effects, and if I had any questions the chemo nurses were always more than glad to answer any questions I had, they were wonderful, like angels in disquise. But I never really questioned a whole a lot, I just wanted to get it over with and the cancer gone, and the sooner the better. I have read where some women have done alternative treatments and it has worked for some and some it didn't. Don't really know what to tell you, I just thought doing the chemo regardless of side effects was the best for me. Stay strong and do what feels right for you.

    Hugs and Prayers
    Cindy
  • mopar
    mopar Member Posts: 1,972 Member
    #3
    DEAR BLESSED ONE
    So sorry you are dealing with this horrible disease, especially to such an extent. The response you've received from the medical professionals regarding your 'questions' are not uncommon. I, for one, have always strived to be proactive in my health care, as I am also very conscious of my lifestyle regarding diet, exercise, natural/homeopathic/alternative options. I prefer to explore all possibilities, and to be well-informed as to what I'm putting in my body, and it's side affects/adverse reactions. It helps me to be prepared - I don't like surprises! For some, knowing what 'could' happen is a little too much to handle. That's perfectly acceptable as well. Whatever your needs and questions are, I think they should be respected and addressed. Having said that, I make my decisions based on all the information, but foremost I trust that God will guide and direct me, and sustain me through the process.

    My final decision was to include chemo, but I certainly coupled that with what I have always done, and stepped things up a bit regarding my immune system, etc. So, while chemo was not pleasant and has nasty side affects, it was an integral part of my program to beat this thing.

    Do you have a gynecologic/oncologist? They are best equipped to handle this type of cancer. As to alternatives, I'm sure you'll find many suggestions on this board, and I know the wonderful ladies here will be chiming in soon. Till then, sending lots of hugs and prayers to you!

    (((HUGS)))
    Monika
  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    #4
    Believe Me
    I wanted nothing more than to avoid chemo. Never been a fan of any pharmaceuticals. I did my research, not so much on the side effects of chemo, but on the options. I consulted many alternative and integrative practitioners and kept getting the same message. Many cancers can be treated without chemo...ovarian cancer is not one of them. I know of many women who have tried the alternative route and very few who have had success. I took a completely integrative approach. I went to the Oasis of Hope hospital between my second and third chemo treatment for intensive integrative treatment and have worked with a naturopath from immediately after surgery to present. I am currently over two years with no evidence of disease (NED) and have only very minimal noticeable side effects from treatment. Not bad for a patient whose surgeon wasn't giving her a year. You may want to look into the Block Center in IL. They are strictly integrative. My only gripe with them is that their diet is not the best for ovarian cancer patients. The Get Well Center in Mansfield, OH. They used insulin potentiated chemo, which uses much lower doses of chemo than the typical treatment. My naturopath is one of the few I know of who successfully treated herself. Diagosed with stage IV ovarian cancer 20 years ago, she declined surgery and treatment because the doctors were not giving her a good prognosis. She has found a very effective diet and lifestyle to keep her cancer at bay and her approach to the disease is very comprehensive. If you want more information about her, send me a PM. Good luck.
  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    #5
    :)

    :)
  • Blessed_1
    Blessed_1 Member Posts: 6
    #6
    Gottalovelife said:

    Probably should have
    When I had to get chemo I read about what they were giving me and the side effects, and if I had any questions the chemo nurses were always more than glad to answer any questions I had, they were wonderful, like angels in disquise. But I never really questioned a whole a lot, I just wanted to get it over with and the cancer gone, and the sooner the better. I have read where some women have done alternative treatments and it has worked for some and some it didn't. Don't really know what to tell you, I just thought doing the chemo regardless of side effects was the best for me. Stay strong and do what feels right for you.

    Hugs and Prayers
    Cindy

    The answers don't make sense
    Cindy,

    Thank you for your response. I have access to 2 oncology nurses and both have been very patient and kind about trying to answer my quetions. The problem for me is that they tell me all the side affects can be addressed and that the side effects are almost always temporary. Yet, when I read the posts here and on other sites, clearly that isn't true. So many of you brave souls seem to have horrible pain and lasting side affects from the chemo and radiation. I realize that the oncology nurses and doctors have to put their best face forward and try to make patients feel as confident as possible, but, at least for me, they lose credibiity when they do that. On what other issues are they not leveling with me?

    I so appreciate your response. God speed on your journey.

    Linda
  • Blessed_1
    Blessed_1 Member Posts: 6
    #7
    mopar said:

    DEAR BLESSED ONE
    So sorry you are dealing with this horrible disease, especially to such an extent. The response you've received from the medical professionals regarding your 'questions' are not uncommon. I, for one, have always strived to be proactive in my health care, as I am also very conscious of my lifestyle regarding diet, exercise, natural/homeopathic/alternative options. I prefer to explore all possibilities, and to be well-informed as to what I'm putting in my body, and it's side affects/adverse reactions. It helps me to be prepared - I don't like surprises! For some, knowing what 'could' happen is a little too much to handle. That's perfectly acceptable as well. Whatever your needs and questions are, I think they should be respected and addressed. Having said that, I make my decisions based on all the information, but foremost I trust that God will guide and direct me, and sustain me through the process.

    My final decision was to include chemo, but I certainly coupled that with what I have always done, and stepped things up a bit regarding my immune system, etc. So, while chemo was not pleasant and has nasty side affects, it was an integral part of my program to beat this thing.

    Do you have a gynecologic/oncologist? They are best equipped to handle this type of cancer. As to alternatives, I'm sure you'll find many suggestions on this board, and I know the wonderful ladies here will be chiming in soon. Till then, sending lots of hugs and prayers to you!

    (((HUGS)))
    Monika

    Your decision to include chemo
    Monika,

    Thank you so much for your response to my question. I do have a gynecologic oncologist. He recommends 6 cycles of carbo/taxol (for the ovarian cancer) followed by 5 weeks of 5 X a week full pelvic radiation and then 2 weeks of bracytherapy (for the uterine cancer).

    Like you, I am looking to God for guidance on this as I try to in everything in life. This is the part this is difficult for me....finding what would be God's will on this point. When you're trying to decide whether to rob a bank, kill someone, or sleep with your neighbor's husband, all those decisions are very clear cut. For me, the chem/rad decision is murky. I have been searching scripture for something that clearly speaks to me on the decision, but so far nothing has made the decision clear.

    Your profile indicates that you have been here awhile, and I would guess have been through quite a bit with your journey. If it is not too sensitive a question, have you ever been sorry you decided to do life-altering treatment like chemo or radiation?

    Linda
  • Blessed_1
    Blessed_1 Member Posts: 6
    #8
    Tethys41 said:

    Believe Me
    I wanted nothing more than to avoid chemo. Never been a fan of any pharmaceuticals. I did my research, not so much on the side effects of chemo, but on the options. I consulted many alternative and integrative practitioners and kept getting the same message. Many cancers can be treated without chemo...ovarian cancer is not one of them. I know of many women who have tried the alternative route and very few who have had success. I took a completely integrative approach. I went to the Oasis of Hope hospital between my second and third chemo treatment for intensive integrative treatment and have worked with a naturopath from immediately after surgery to present. I am currently over two years with no evidence of disease (NED) and have only very minimal noticeable side effects from treatment. Not bad for a patient whose surgeon wasn't giving her a year. You may want to look into the Block Center in IL. They are strictly integrative. My only gripe with them is that their diet is not the best for ovarian cancer patients. The Get Well Center in Mansfield, OH. They used insulin potentiated chemo, which uses much lower doses of chemo than the typical treatment. My naturopath is one of the few I know of who successfully treated herself. Diagosed with stage IV ovarian cancer 20 years ago, she declined surgery and treatment because the doctors were not giving her a good prognosis. She has found a very effective diet and lifestyle to keep her cancer at bay and her approach to the disease is very comprehensive. If you want more information about her, send me a PM. Good luck.

    Alternative paths
    Tethys41,

    Thank you so much for your candid comments. If I might ask a follow up question, of the women you've known who opted to take an alternative path to chemo/rad, how many were sorry for that decision? Even if they are not stil around, did they reach the end of their journey peacefully, maybe even calmly knowing they did it the way they wanted to?

    I completely understand that the 2 primary cancers I have are not going to go away unless God chose to miraculously heal me. The thoughts banging through my is though is this:
    For now, I have no sign of the cancers. Everything that was left after surgery is microscopic. So, maybe I have 6 months, 2 years, 5 years...who knows...where I can live a pretty normal life before the cancer comes back and I have to deal with it again.
    If I do the chemo/radiation now, maybe it postpones the cancers from returning a couple more years. But if I have to live with intensive side effects of the treatments during all that extra time and have no "normal like life used to be" time at all, I don't know that is a good trade off.

    I realize none of us has a crystal ball to know anything about remission or recurrence. Ultimately all that is in God's hands. Still, I would like to know what those of you who have been there think.

    Thank God for you 2 years with NED! I will pray you have many more.

    Linda
  • kikz
    kikz Member Posts: 1,345 Member
    #9
    You have every right
    to question your treatment or anything else. This is your life.

    I was so scared that I put myself completely in the hands of my primary, who misdiagnosed me and a gastroenterologist who called to confirm the ovarian cancer telling me it was Stage IV and nothing could be done. I was convinced I had only a couple of months to live until I met with my gyn/onc/surgeon who told me it was Stage IIIc and I had a fighting chance. I then put myself in his hands and the oncologist. What else could I do? They did get me into remission so I know if I had to I would do it again. I don't know what else there is...

    So I really did not question the treatment. I was not in a frame of mind to question anything. I did have a couple of friends tell me about other methods; even giving me a DVD and book to read. But how can a person who is very ill take it upon themselves to try to find an alternative treatment? And from what I have read there really isn't anything better than chemo right now.

    The women on this board are special as I believe you are. Even at this scariest of times you maintain a sense of humor.

    You are in my thoughts and prayers.

    Karen
  • pattysoo
    pattysoo Member Posts: 170
    #10
    2nd opinion
    I am a strong proponent of second (or even third) opinions. You have time, really you do, to locate and see another cancer specialist. My local gyn/onc welcomed another opinion, and I learned a lot by seeing a couple of different experts. That all made me more comfortable with the decisions I finally made. Cancer is bad enough. The stress of choosing treatment makes it even worse.
  • ktamp
    ktamp Member Posts: 81
    #11
    I did not and I wish I had
    I just finished my 6 rounds of chemo march 21. 6 rounds of carbo. The first two with taxol then we switched to taxotere because of severe neuropathy. I think my body has been trashed by chemo. My situation is a bit different because I was a 1C. I don't necessarily believe now in hindsight that hammering me with the full regimen of chemo was the best option for me. I feel like my gyn/oncologist hammered me with chemo with no thought of the lifetime consequences for me. Especially since I was showing pretty severe side effects after the first two cycles. What really floored me was I met with a different guy in his practice just before my last treatment. You know how you have to see one other other folks in the practice sometimes? He is new to the practice. He spent alot of time talking about all I've been through and was willing to drop the last taxotere as the taxenes have been so hard on me. He explained to me that the carbo is the main hitter in my regimen. My doctor never explained that to me and I would have liked to have known that dropping the taxotere was an option. However I believe that later stages of ovarian cancer probably have fewer options. Sometimes the choice is living with cancer or doing heavy chemo and/or radiation that may have lifelong consequences. Sounds like you have a strong faith. Pray about it. Get another opinion or two. As for me, I am exploring some alternative therapies to try and detox from the chemo. Best of luck to you!
  • mopar
    mopar Member Posts: 1,972 Member
    #12
    Blessed_1 said:

    Your decision to include chemo
    Monika,

    Thank you so much for your response to my question. I do have a gynecologic oncologist. He recommends 6 cycles of carbo/taxol (for the ovarian cancer) followed by 5 weeks of 5 X a week full pelvic radiation and then 2 weeks of bracytherapy (for the uterine cancer).

    Like you, I am looking to God for guidance on this as I try to in everything in life. This is the part this is difficult for me....finding what would be God's will on this point. When you're trying to decide whether to rob a bank, kill someone, or sleep with your neighbor's husband, all those decisions are very clear cut. For me, the chem/rad decision is murky. I have been searching scripture for something that clearly speaks to me on the decision, but so far nothing has made the decision clear.

    Your profile indicates that you have been here awhile, and I would guess have been through quite a bit with your journey. If it is not too sensitive a question, have you ever been sorry you decided to do life-altering treatment like chemo or radiation?

    Linda

    THANK YOU, LINDA
    It was so kind of you to give me a personal response.

    No, I do not regret agreeing to chemo treatments. I believe that's where God wanted me at that particular moment in time. I certainly did not look forward to it, but once my husband and I prayed and left it in His hands, I trusted that all would be for His glory, no matter what. As you know, oftentimes events in our lives are not just for us, but for others. I met so many people in this process, and have been able to share so much, even if for a brief moment. I believe it made me stronger, and my husband and I more grounded in our faith than ever. And though I have some lasting effects (nothing too unsurpassable), I appreciate every moment that I am here and every breath that I have.

    I would like to agree with you at this moment that you ARE healed. When Christ died for us, it was done - complete. In this world, though we must endure the things of the flesh, it makes His promise no less true - By His Stripes You Are Healed, whether we see that manifestion now or later. So, I know that no matter what you choose to do, He will bring you through it, around it, and beyond it. I pray for strength for you, and peace with your decision. May this Easter Sunday bring you New Life, and may you be uplifted knowing that someone is keeping you in prayer.

    Please keep in touch.

    (((HUGS)))
    Monika
  • cjoy55
    cjoy55 Member Posts: 11
    #13
    So glad to see this post
    My mom finished chemo 7 weeks ago. Her oncologist gave her chemo weekly and she was so sick. She said there were times she was so sick and so weak that she couldnt get up. She felt that, that must be what dying feels like. She has told us she will not do it again but we all thought she would have a period of remmision to gain her strength. She wants to control the cancer with her diet and life style. Just as she is feeling better her ca125 has shot up to 170. She has a PET scan scheduled for tommorow. I am searching the internet looking for advice or stories of women that have controled this disease in differant ways. Tethys41 can you give me info on the woman that you are talking about? I feel any stories of hope and strength are so helpful at this point. All of you are so strong and supportive I hope to convince my mom to come to this site.
    Christie
  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    #14
    Blessed_1 said:

    Alternative paths
    Tethys41,

    Thank you so much for your candid comments. If I might ask a follow up question, of the women you've known who opted to take an alternative path to chemo/rad, how many were sorry for that decision? Even if they are not stil around, did they reach the end of their journey peacefully, maybe even calmly knowing they did it the way they wanted to?

    I completely understand that the 2 primary cancers I have are not going to go away unless God chose to miraculously heal me. The thoughts banging through my is though is this:
    For now, I have no sign of the cancers. Everything that was left after surgery is microscopic. So, maybe I have 6 months, 2 years, 5 years...who knows...where I can live a pretty normal life before the cancer comes back and I have to deal with it again.
    If I do the chemo/radiation now, maybe it postpones the cancers from returning a couple more years. But if I have to live with intensive side effects of the treatments during all that extra time and have no "normal like life used to be" time at all, I don't know that is a good trade off.

    I realize none of us has a crystal ball to know anything about remission or recurrence. Ultimately all that is in God's hands. Still, I would like to know what those of you who have been there think.

    Thank God for you 2 years with NED! I will pray you have many more.

    Linda

    Treatment
    Linda,
    The women I know who opted not to do chemo ended up having to do it because the cancer did not resolve itself with alternatives alone. The one women who continued to decline treatment is no longer with us. And it is my understanding that allowing the cancer to go unchecked is a miserable way to go. There are a lot of issues in the questions and perceptions that you convey. First, I look at my cancer experience as a giant wake up call to change my life, which I have, and I am much happier and have a fuller life than I did before my diagnosis. So, although I would have loved to make the changes I did without a cancer diagnosis, I don't think I would have. Integrative medicine is a wonderful way to make the chemo easier on you and easier on your body. I did many things to support my body during treatment, and I feel that these things are why I am not suffering the pain and lingering side effects that many survivors do. Of course everyone is different, and maybe I wouldn't have had the side effects even without integrative treatment, but I tend to think they helped a lot. Your perception of life after treatment sounds pretty grim. Although many members here share issues they are dealing with during and after treatment, I think many of us are grateful to have had the option of treatment that would extend our lives.
    I can't speak to radiation because I did not have uterine cancer and that was not a part of my treatment. But I really encourage you to find a good naturopath or integrative practitioner and talk to them about potential support through this journey. I know how terrifying cancer treatment can seem. I had seen my mother go through it in the 80's, and was not eager to follow. I'm not going to lie, it can be tough at times, but the payoff is so worth it.
    One thing to remember is that although it appears that all the cancer was removed with the surgery, there are still cancer cells there. In that they were able to grow into a tumor in the first place, this means there are imbalances in your body. If you look into integrative medicine, it addresses these imbalances that may be a result of toxins, diet, stress, or some other condition in your body. Until these imbalances are resolved, the risk of the cancer coming back will remain. Whether or not you opt out of chemo and radiation, I strongly encourage you to find someone to help you address the imbalances in your body. I hope you find the answer that works best for you.
  • LaundryQueen
    LaundryQueen Member Posts: 676
    #15
    cjoy55 said:

    So glad to see this post
    My mom finished chemo 7 weeks ago. Her oncologist gave her chemo weekly and she was so sick. She said there were times she was so sick and so weak that she couldnt get up. She felt that, that must be what dying feels like. She has told us she will not do it again but we all thought she would have a period of remmision to gain her strength. She wants to control the cancer with her diet and life style. Just as she is feeling better her ca125 has shot up to 170. She has a PET scan scheduled for tommorow. I am searching the internet looking for advice or stories of women that have controled this disease in differant ways. Tethys41 can you give me info on the woman that you are talking about? I feel any stories of hope and strength are so helpful at this point. All of you are so strong and supportive I hope to convince my mom to come to this site.
    Christie

    Dragging your feet re: chemo
    I totally understand where you are coming from, Linda. I think the diagnosis of cancer can be so shocking that it takes time to figure out what to do next. I had known quite a few people who used natural methods to heal cancer & I was convinced that I could do it, too. None of them had ovarian cancer and I agree with Tethys that ovarian cancer needs chemotherapy & stage III uterine cancer does, too.

    I dragged my feet after surgery & tried to do a lot of alternative cancer treatments for about 3 weeks. The original gyn/onc who did my surgery "fired" me as a patient! I had to find another doctor when it became obvious that I needed chemo (more tumors grew back after surgery). And the cancer quickly spread into my liver.

    I think I could be the poster child for dong alternative cancer therapies WITH chemo. I don't have any residual neuropathy or a bad case of chemo brain or serious hearing loss (those are the long-term side effects from the chemo). I have not had radiation so I can't speak about that. I couldn't handle taxol either so I only did 4 of those with 5 carboplatin treatments.

    I'm on my second round of chemo for recurrence & tried IPT before going on the full strength stuff. Ovarian cancer has a lot of ways of using your immune system to work against you -- so doing stuff to boost your immune system can work against you. I think the anti-inflammatory diet is a good idea because inflammation promotes cancer.

    In my opinion & with my experience, it is a mistake to think that surgery & natural medicine is enough to treat ovarian cancer. Maybe you feel that you have lived long enough. If you are ready to die, please sign up for hospice so you can get on narcotics for pain as ovarian cancer often attaches to the intestines & can cause bowel obstructions. OMG that hurts!

    The uterine discussion board has a lot more women discussing natural & intgrative therapies than this discussion board. I think Tethys advice is good: find a naturopath or an integrative doctor who has experience with cancer patients.

    Cancer is a systemic disease. That's why the doctor wants you to do chemo. If there was another way to treat cancer without chemo successfully, I would have done it. I still want to live even though I am not afraid to die. I'm afraid of pain.
  • Radioactive34
    Radioactive34 Member Posts: 391 Member
    #16
    I did, I do
    I was declared NED right after surgery. My washes were clean and all the body parts they took out had no cancer. The tumor was fully encased. It did not rupture.

    Everything I read prior to meeting medical oncologist did not give me confidence. I had seen my mother in law go through chemo first hand. I had other family members die of cancer. If I was NED, I was not doing chemo. For the first meeting with the medical oncologist, I brought in my studies and was prepared to wage war against chemo.

    I was staged 1A. The cancer was not your typical OVC. They were going to treat it like small cell lung cancer since that was the closest to it. The doctor was blunt with me. If I did chemo I had a chance of living longer. If I did not my survival rate for the next 2 years was in single digit %s.

    My oncologist convinced me to go 6 rounds of chemo and them whole brain radiation. I did 5 rounds of chemo and refused the radiation. Through out chemo, I'd ask the doctor about my life with OVC. He said that while my cancer was found in the ovary it was not OVC. It behaved differently. If it came back the odds were it was going to be palliative care.

    The 5 rounds made me feel like I was dying...and I did really good for being on chemo. My mother took care of me through most of this. We discussed the 6th chemo. She was behind me when I declined it. She was in the doctors office for the whole brain radiation discussion. She agreed against it.

    For me chemo is a prison. I can't really live with it. I took my access port out. I decided if the cancer came back, then I would take my chances with homeopathic therapies or just enjoy what I could of life.

    Now, prior to coming to that decision I researched a lot. I talked to a lot of people with small cell cancers. I talked to various doctors who dealt with the after effects of the conventional treatments. I did a lot of soul searching. In this forum you can read some of my moments of panic.

    I love life. I love my family. This is as much for them as it is for me. All they have seen is people chemo'ing and radiating to death. They/we have seen our family members die in some of the worst manners. I have always lived life on my own terms. I will die on my own terms.

    Since my decissions were made, I have had more than one second opinion. Doctor's across continents have all reaffirmed each other. The staging of small cell lung cancer has been revamped. It is either limitted or extensive. Not very reassuring but it is what it is.

    That is not to say, I do not have days where the idea of passing seems unbearable but for the most part I am at peace with my decision.
  • undertreatment2012
    undertreatment2012 Member Posts: 126
    #17
    Blessed_1 said:

    The answers don't make sense
    Cindy,

    Thank you for your response. I have access to 2 oncology nurses and both have been very patient and kind about trying to answer my quetions. The problem for me is that they tell me all the side affects can be addressed and that the side effects are almost always temporary. Yet, when I read the posts here and on other sites, clearly that isn't true. So many of you brave souls seem to have horrible pain and lasting side affects from the chemo and radiation. I realize that the oncology nurses and doctors have to put their best face forward and try to make patients feel as confident as possible, but, at least for me, they lose credibiity when they do that. On what other issues are they not leveling with me?

    I so appreciate your response. God speed on your journey.

    Linda

    questions and answers
    I agree with you. when I ask questions, it's like they put my case in with all the other studies ever done on my type of cancer and say, you might have this, but we have this for that. HUH??? And totally, so many on here have such horrible experiences and long lasting if not permanent side effects.
    The bottom line is they are trained to herd us in and do this or that to try to save us. They don't want questions, They wonder... why so many questions? are you opting out of treatment?? Why? How could you ever consider that. I look at it differently. Lets slow down, I decided to try and go with it. If it doesnt work, I'm done. I am not one who will go through years of chemo, sick and sicker for the same end result. Sometimes we just have to decide for ourselves.
  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    #18
    cjoy55 said:

    So glad to see this post
    My mom finished chemo 7 weeks ago. Her oncologist gave her chemo weekly and she was so sick. She said there were times she was so sick and so weak that she couldnt get up. She felt that, that must be what dying feels like. She has told us she will not do it again but we all thought she would have a period of remmision to gain her strength. She wants to control the cancer with her diet and life style. Just as she is feeling better her ca125 has shot up to 170. She has a PET scan scheduled for tommorow. I am searching the internet looking for advice or stories of women that have controled this disease in differant ways. Tethys41 can you give me info on the woman that you are talking about? I feel any stories of hope and strength are so helpful at this point. All of you are so strong and supportive I hope to convince my mom to come to this site.
    Christie

    Controlling this disease
    Christie,
    I know a woman who has been dealing with this disease for 9 years and has been through chemo 4 or 5 times and this last time, her CA-125 continued to rise during treatment. After she finished that chemo, she started to see my naturopath and in addition to the other things she was already doing, like diet, exercise and supplements, she started using a product called Iscador, under the direction of my naturopath. In the last 6 months, her CA-125 has dropped from 51 to 13, and her CT scan is clear. There is a very lengthy thread on the Inspire board regarding this and some other approaches people are using to address this disease. You will have to join Inspire to see the thread, and it is not unlike reading "War and Peace," but I think you will gain a good prespective by reading it.

    https://www.inspire.com/groups/ovarian-cancer-national-alliance/discussion/two-years-ned-2/
  • kimberly sue 63
    kimberly sue 63 Member Posts: 421 Member
    #19
    Radioactive34 said:

    I did, I do
    I was declared NED right after surgery. My washes were clean and all the body parts they took out had no cancer. The tumor was fully encased. It did not rupture.

    Everything I read prior to meeting medical oncologist did not give me confidence. I had seen my mother in law go through chemo first hand. I had other family members die of cancer. If I was NED, I was not doing chemo. For the first meeting with the medical oncologist, I brought in my studies and was prepared to wage war against chemo.

    I was staged 1A. The cancer was not your typical OVC. They were going to treat it like small cell lung cancer since that was the closest to it. The doctor was blunt with me. If I did chemo I had a chance of living longer. If I did not my survival rate for the next 2 years was in single digit %s.

    My oncologist convinced me to go 6 rounds of chemo and them whole brain radiation. I did 5 rounds of chemo and refused the radiation. Through out chemo, I'd ask the doctor about my life with OVC. He said that while my cancer was found in the ovary it was not OVC. It behaved differently. If it came back the odds were it was going to be palliative care.

    The 5 rounds made me feel like I was dying...and I did really good for being on chemo. My mother took care of me through most of this. We discussed the 6th chemo. She was behind me when I declined it. She was in the doctors office for the whole brain radiation discussion. She agreed against it.

    For me chemo is a prison. I can't really live with it. I took my access port out. I decided if the cancer came back, then I would take my chances with homeopathic therapies or just enjoy what I could of life.

    Now, prior to coming to that decision I researched a lot. I talked to a lot of people with small cell cancers. I talked to various doctors who dealt with the after effects of the conventional treatments. I did a lot of soul searching. In this forum you can read some of my moments of panic.

    I love life. I love my family. This is as much for them as it is for me. All they have seen is people chemo'ing and radiating to death. They/we have seen our family members die in some of the worst manners. I have always lived life on my own terms. I will die on my own terms.

    Since my decissions were made, I have had more than one second opinion. Doctor's across continents have all reaffirmed each other. The staging of small cell lung cancer has been revamped. It is either limitted or extensive. Not very reassuring but it is what it is.

    That is not to say, I do not have days where the idea of passing seems unbearable but for the most part I am at peace with my decision.

    trying to understand
    So you were diagnosed with 1a OVC...but it wasn't a typical type? It was small cell lung cancer in your ovary? Am I understanding that right? What I also don't understand is if it was 1a stage which is not metastatic than you could be ok without chemo. Has there been other signs of ongoing growth of the cancer? Also what was the brain radiation all about?

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