Papillary serous adenocarcinoma (HELP! I'm new)

hello everybody!

after hours of roaming the internet trying to figure out what the hell to do about this, I actually found you all to be the best reading I've come across. my mother has a recurrence of this awful cancer after about 18 months post hysterectomy, chemo & radiatioN. she's not convinced that chemo is the best treatment or something that she wants to do again and I don't blame her for that. We just lost her husband to colon cancer and he did a lot of suffering along the way, much of which was induced by chemo. I am concerned however that another sib's view on chemo may be more influential than facts. im interested in people's experiences with both chemo and especially if anyone has had success with natural therapies? Right now she's doing gerson, bud wig, and IV Vitamin C but I can see a lump growing on her neck so we sure dont think it's enough. Suggestions, anyone?

& thanks in advance for the support!

Comments

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    Welcome

    Welcome to the club no one wants to belong to.  This is a good place to come for information, support, and advice.  I am so sorry to hear of your mother's recurrence, and I certainly understand how she feels about chemo.  I had a recurrence after seven month almost 3 years go.  I chose the traditional route of chemo and have had many rounds of various types of chemo.  Not pleasant, but I am still here.  I have had many more good days than bad. I have gotten to see and cuddle four great grand babies, and I don't regret going this route at all.  Everyone is different and we all have to chose a path that we feel comfortable with. Sending hugs and prayers for your mother and you.

    Lou Ann

  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    Alternatives

    Hi,

    I am curious.  Your mom is doing a number of alternative treatments, including IVC.  Who is administering that for her?  I do believe that when you want to use integrative or alternative therapies it is best to do so under the guidance of a trained professional; naturopath, integrative doctor or functional medicine doctor with oncology experience.  I assume she is seeing someone like this if she is receiving IVC.  These types of professionals, if they have oncology experience, often know the best approach, whether alternatives alone will work or whether it is better to include chemo.  I know that using integrative therapies reduces the side effects of chemo.  Was she doing any integrative things during her first treatments with chemo?  By the way, I had papillary serous adenocarcinoma of the ovary and addressed it with chemo and integrative therapies.  I've been in remission for 7 years.  Good luck to your mom.

  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,517 Member
    edited December 2016 #4
    Thanks, Tethys41.  I think

    Thanks, Tethys41.  I think you said it beautifully.

  • KTMay
    KTMay Member Posts: 25
    Tethys41 said:

    Alternatives

    Hi,

    I am curious.  Your mom is doing a number of alternative treatments, including IVC.  Who is administering that for her?  I do believe that when you want to use integrative or alternative therapies it is best to do so under the guidance of a trained professional; naturopath, integrative doctor or functional medicine doctor with oncology experience.  I assume she is seeing someone like this if she is receiving IVC.  These types of professionals, if they have oncology experience, often know the best approach, whether alternatives alone will work or whether it is better to include chemo.  I know that using integrative therapies reduces the side effects of chemo.  Was she doing any integrative things during her first treatments with chemo?  By the way, I had papillary serous adenocarcinoma of the ovary and addressed it with chemo and integrative therapies.  I've been in remission for 7 years.  Good luck to your mom.

    Question from a newbie

    What are "integrative therapies" exactly?  What treatments/activities does this term encompass in our types of cancers? 

  • Tethys41
    Tethys41 Member Posts: 1,382 Member
    KTMay said:

    Question from a newbie

    What are "integrative therapies" exactly?  What treatments/activities does this term encompass in our types of cancers? 

    INtegrative

    Hi KTMay,

    There are many, many integrative therapies for cancer.  The main idea is to help make the body healthy while increasing the effectiveness of the conventional treatments.  Some pracitioners seem to have a cookie cutter approach to integrative treatments, prescribing the same collection of treatments to every patient, while others take a more personalized approach and identify what would best support that particlular patient.  Depending on the practitioner, he or she might recommend anything from supplements, diet, IV vitamin C, ozone therapy, nutritional IVs, Mistletoe injections or IVs, leatrile, accupuncture, coffee enemas, the list goes on and on.  

  • Gmascookie
    Gmascookie Member Posts: 5
    edited December 2016 #7
    Lou Ann M said:

    Welcome

    Welcome to the club no one wants to belong to.  This is a good place to come for information, support, and advice.  I am so sorry to hear of your mother's recurrence, and I certainly understand how she feels about chemo.  I had a recurrence after seven month almost 3 years go.  I chose the traditional route of chemo and have had many rounds of various types of chemo.  Not pleasant, but I am still here.  I have had many more good days than bad. I have gotten to see and cuddle four great grand babies, and I don't regret going this route at all.  Everyone is different and we all have to chose a path that we feel comfortable with. Sending hugs and prayers for your mother and you.

    Lou Ann

    Thank You! Great grandbabies?

    Thank You! Great grandbabies? Congratulations! That sounds like absolute bliss!

  • EZLiving66
    EZLiving66 Member Posts: 1,483 Member
    Welcome to our group, Ariel!!

    Welcome to our group, Ariel!!  I hope it's ok to call you that?

    This is a great group of ladies who are very knowledgeable.  I'm very interested that your doctor only recommended three rounds of chemo.  I have Stage II, UPSC and mine recommended six (but I only made it through three).  Chemo was horrible for me and a year later I'm still having some problems from it although....they're better now than they were a year ago.

    I don't know about uterine cancer being caused by bad relationships with family but maybe the stress of family could lower your immunity to it??  I'm glad this has brought your family closer together, though!!

    Let us know how you're doing - we all care!

    Love,

    Eldri

  • ARIELKY
    ARIELKY Member Posts: 5
    edited December 2016 #9

    Welcome to our group, Ariel!!

    Welcome to our group, Ariel!!  I hope it's ok to call you that?

    This is a great group of ladies who are very knowledgeable.  I'm very interested that your doctor only recommended three rounds of chemo.  I have Stage II, UPSC and mine recommended six (but I only made it through three).  Chemo was horrible for me and a year later I'm still having some problems from it although....they're better now than they were a year ago.

    I don't know about uterine cancer being caused by bad relationships with family but maybe the stress of family could lower your immunity to it??  I'm glad this has brought your family closer together, though!!

    Let us know how you're doing - we all care!

    Love,

    Eldri

    Stage 1

    My treatment is standard for someone with Stage 1 serous papillary cancer. It's more to make sure that any serous cancer cells that were too small to escape detection at the time of the hysterectomy, don't find a place to rest somewhere and start to grow and multiply... it could happen anywhere in the body, and there's not much that could be done for me if it recurred, which serous cancer tends to do. My oncologist told me that this approach is like trying to kill a flea with a sledgehammer, but it's the best they can offer. Chemo kills cancer cells anywhere they are found in the body; it's systemic. Unfortunately it also kills some healthy cells as well. The radiation treatments will be more localized over the pelvic area only.

     

     

  • ARIELKY
    ARIELKY Member Posts: 5
    edited December 2016 #10
    Newbie

    Hi everyone, I'm new here, joined because I wanted some kind of online support group of women going through the same thing that I am. I'm going through chemo right now, just had my second round a week ago. Today was the first time I woke up feeling normal, and am finally having a good day.

    When I got diagnosed with cancer mid-September, it wasn't clear whether I simply had a uterine carcinoma, or whether I also had serous cancer. Once they did the hysterectomy, signs indicated that there was serous papillary cancer, but it still wasn't completely clear from the way the lab report was written, so my oncologist got a second opinion from a Harvard-associated professional. Having read the literature (as much as I could take), I agreed to stage 2 of treatment, 3 rounds of chemo, and stage 3, radiation following chemo.

    Chemo has been rough; it's been quite a saga. I knew that I probably wouldn't be one of those that sail through it. How anyone is able to keep working while going through chemo is beyond me. I have been able to care for myself, as I live alone, but thank the Goddess that my son and his wife are coming to care for me during the third round that is the last week of December.

    I'm going through some intense identity issues, as I don't recognize that alien in the mirror since my hair fell out. Fortunately I've been given a couple wigs and lots of beautiful scarves and hats... I've always been a hat and scarf person, so I'm actually having fun with that. I'm also obese, diabetic and take blood pressure medication. I'm 63 years old, by the way.

    I went public on Facebook with having this cancer, and have been given a lot of support by some people, and ignored by others, most of whom I took off my Facebook recently. I am very fortunate to have a close friend since childhood who does continual esoteric healing on me. She has made a huge difference when my energy was too low to get out of bed much. I told her once that she was better than a pain pill. She really helped me recover from my surgery. And I love it when people pray for me; I enjoy the loving flow of energy so much. Sometimes I feel so loved that I send it out to friends and family who I know are suffering.

    Someone told me that uterine cancer is a physical symptom of something off in your relationships as a mother and with your mother. I think this is true. However, in going through this process of healing from cancer, I have drawn closer to my mother than I've ever been in my life. And my son, who had been neglecting me, has come through for me financially, emotionally, and with coming to visit and care for me. My mother also provides financial support, and we talk almost every day now on the phone, really enjoying our talks. There has been deep healing in my family.

    At Thanksgiving, I was able to drive all the way to Oceanside from where I live in Arizona now, and it was the best ever. I enjoyed the company of my mother, sister and brother-in-law, and brother and sister-in-law very much. It was all so low key. We spent several days together visiting, working puzzles, putting up outdoor Christmas decorations for my 86-year-old mother, sitting outdoors chatting by the firepit, spread out working on projects throughout her place, reading, resting. I caught up with my mending and did some beading, making jewelry as gifts.

    I treasure the time that I spent with my family because I've been outside of it for so long. It was very healing. I tell people that the silver lining of having this cancer is the love, healing, and support that I've been receiving from my friends and family. I felt so alone for so long. I don't anymore.

     

  • ARIELKY
    ARIELKY Member Posts: 5
    So sorry that it's recurred! Response to GMAS Cookie

    May I ask what stage the serous cancer was when she had the hysterectomy, and how many rounds of chemo she did? If you read the literature on serous cancer, the prognosis is dismal, but my oncologist told me about the major study done (albeit retroactively) showed that 100% of the women who had serous cancer survived who had surgery, chemo and radiation, and half of the women who chose not to had died.

    My plan is to do the preventive plan of chemo and radiation, but after that I'm done with this medical approach. I was told that if it recurred that there wasn't much that they could do for me. I plan to do everything to build up my immune system and get as healthy as possible, lose my extra weight, and honor and care for my body as much as possible. I will explore alternative approaches as well. On further questioning my oncologist, I asked what could be done if the serous cancer recurred, would chemo help then? She said, of course, they could do chemo, but they couldn't make any promises.  I did have 20 lymph nodes removed going up to my lungs because that is the usual way it travels when it recurs. Where has your mother's serous cancer recurred? Given what I've been told, I'd say that your mother is right not to have further chemo. What should she do instead? I don't know. I've been given quite a lot of advice by a number of health-conscious friends, and I will slowly start sharing it. However, there are no studies that have been done that I am aware of, that investigate the effectiveness of alternative methods when it comes to serous cancer.

     

  • derMaus
    derMaus Member Posts: 558 Member
    Welcome, Ariel!

    I've only been on this Board for 6 weeks and it's already saved my sanity several times. I start chemo on Monday, so will soon be your sister in hats-scarves-turbans, etc.

    One comment caught my eye: the dreaded recurrence that we all fear. I find myself shocked over and over again about how crude, and indirect, the treatments are ("flea with a sledgehammer" is a good analogy). As I keep asking my onc: I currently have no turmors,  so you have nothing with which to gauge the effectiveness of the chemo I'm undertaking. If I have a recurrence, how do you know which chemo to use? Did the previous one 'fail' ? I can't get a clear answer; maybe someone here can explain that to me.

    I did want to pass along one thing, though: a colleague's husband is a pharma sales rep (switched to an MBA program his first year of med school). She told me that Keytruda was just approved for more cancer variations. I've followed the issues with immunotherapy and believe I understand its limiations. However the fact that they're expanding the range of what can be treated is very interesting to me. Here's an older link (2015), I'm sure you all have already seen it but my interest was re-awakened based on what I just heard. https://clinicaltrials.gov/ct2/show/NCT02630823.

    I know several of you follow this topic closely, so I'm hoping to expand my knowledge by follow you. Blessings on our collective wisdom!

     

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    edited December 2016 #13
    ARIELKY said:

    So sorry that it's recurred! Response to GMAS Cookie

    May I ask what stage the serous cancer was when she had the hysterectomy, and how many rounds of chemo she did? If you read the literature on serous cancer, the prognosis is dismal, but my oncologist told me about the major study done (albeit retroactively) showed that 100% of the women who had serous cancer survived who had surgery, chemo and radiation, and half of the women who chose not to had died.

    My plan is to do the preventive plan of chemo and radiation, but after that I'm done with this medical approach. I was told that if it recurred that there wasn't much that they could do for me. I plan to do everything to build up my immune system and get as healthy as possible, lose my extra weight, and honor and care for my body as much as possible. I will explore alternative approaches as well. On further questioning my oncologist, I asked what could be done if the serous cancer recurred, would chemo help then? She said, of course, they could do chemo, but they couldn't make any promises.  I did have 20 lymph nodes removed going up to my lungs because that is the usual way it travels when it recurs. Where has your mother's serous cancer recurred? Given what I've been told, I'd say that your mother is right not to have further chemo. What should she do instead? I don't know. I've been given quite a lot of advice by a number of health-conscious friends, and I will slowly start sharing it. However, there are no studies that have been done that I am aware of, that investigate the effectiveness of alternative methods when it comes to serous cancer.

     

    Just wanted to welcome you to

    Just wanted to welcome you to the club no one wants to belong to.  This is a good place to come for support and information.  The ladies here have a wealth of information and we are also good listeners. So come,here to rant if you need to.  I also don't believe that family situations have anything to do with cancer, but I do believe that stress just might make you more susceptible.  I was diagnosed within two weeks of finishing reading "Shades of Gray" and my first thought was that I was being punished for reading such a "dirty" book.

    Hugs and prayers, Lou Ann

  • Editgrl
    Editgrl Member Posts: 903 Member
    edited December 2016 #14
    Lou Ann M said:

    Just wanted to welcome you to

    Just wanted to welcome you to the club no one wants to belong to.  This is a good place to come for support and information.  The ladies here have a wealth of information and we are also good listeners. So come,here to rant if you need to.  I also don't believe that family situations have anything to do with cancer, but I do believe that stress just might make you more susceptible.  I was diagnosed within two weeks of finishing reading "Shades of Gray" and my first thought was that I was being punished for reading such a "dirty" book.

    Hugs and prayers, Lou Ann

    Lou Ann, that's a good one!

    If reading that book caused cancer, whole neighborhoods would be decimated lol!

     

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    Editgrl said:

    Lou Ann, that's a good one!

    If reading that book caused cancer, whole neighborhoods would be decimated lol!

     

    Ha! Chris.... thanks for the

    Ha! Chris.... thanks for the laugh this morning!!!! Your response is priceless.

  • Kvdyson
    Kvdyson Member Posts: 790 Member
    ARIELKY said:

    Newbie

    Hi everyone, I'm new here, joined because I wanted some kind of online support group of women going through the same thing that I am. I'm going through chemo right now, just had my second round a week ago. Today was the first time I woke up feeling normal, and am finally having a good day.

    When I got diagnosed with cancer mid-September, it wasn't clear whether I simply had a uterine carcinoma, or whether I also had serous cancer. Once they did the hysterectomy, signs indicated that there was serous papillary cancer, but it still wasn't completely clear from the way the lab report was written, so my oncologist got a second opinion from a Harvard-associated professional. Having read the literature (as much as I could take), I agreed to stage 2 of treatment, 3 rounds of chemo, and stage 3, radiation following chemo.

    Chemo has been rough; it's been quite a saga. I knew that I probably wouldn't be one of those that sail through it. How anyone is able to keep working while going through chemo is beyond me. I have been able to care for myself, as I live alone, but thank the Goddess that my son and his wife are coming to care for me during the third round that is the last week of December.

    I'm going through some intense identity issues, as I don't recognize that alien in the mirror since my hair fell out. Fortunately I've been given a couple wigs and lots of beautiful scarves and hats... I've always been a hat and scarf person, so I'm actually having fun with that. I'm also obese, diabetic and take blood pressure medication. I'm 63 years old, by the way.

    I went public on Facebook with having this cancer, and have been given a lot of support by some people, and ignored by others, most of whom I took off my Facebook recently. I am very fortunate to have a close friend since childhood who does continual esoteric healing on me. She has made a huge difference when my energy was too low to get out of bed much. I told her once that she was better than a pain pill. She really helped me recover from my surgery. And I love it when people pray for me; I enjoy the loving flow of energy so much. Sometimes I feel so loved that I send it out to friends and family who I know are suffering.

    Someone told me that uterine cancer is a physical symptom of something off in your relationships as a mother and with your mother. I think this is true. However, in going through this process of healing from cancer, I have drawn closer to my mother than I've ever been in my life. And my son, who had been neglecting me, has come through for me financially, emotionally, and with coming to visit and care for me. My mother also provides financial support, and we talk almost every day now on the phone, really enjoying our talks. There has been deep healing in my family.

    At Thanksgiving, I was able to drive all the way to Oceanside from where I live in Arizona now, and it was the best ever. I enjoyed the company of my mother, sister and brother-in-law, and brother and sister-in-law very much. It was all so low key. We spent several days together visiting, working puzzles, putting up outdoor Christmas decorations for my 86-year-old mother, sitting outdoors chatting by the firepit, spread out working on projects throughout her place, reading, resting. I caught up with my mending and did some beading, making jewelry as gifts.

    I treasure the time that I spent with my family because I've been outside of it for so long. It was very healing. I tell people that the silver lining of having this cancer is the love, healing, and support that I've been receiving from my friends and family. I felt so alone for so long. I don't anymore.

     

    Welcome, Arielky. So very

    Welcome, Arielky. So very sorry to hear of your diagnosis. There are others on this board with a similar diagnosis who are willing to share their experiences with you. Hopefully that will prove helpful and hopeful to you during your journey. It sounds like you have a good head on your shoulders and a strong network of family and friends to assist you so you are moving in the right direction. There will be bad days and good days in the coming months so just remember to take it a day at a time. Wishing you strength and peace, Kim

  • cindy0519
    cindy0519 Member Posts: 173
    grmascookie - so sorry to

    grmascookie - so sorry to hear about your mom's recurrence. Wish I had more to offer in the form of suggestions. Family dynamics are tough and the best advice I have is to keep talking to each other (even when its tough!) and to your mom.  What does she want to do? It's easy to jump aboard the do all you can train (I did it with my Dad when he fought lung cancer 10 years ago) but it's most important to listen to (and fight for) what your mom wants in the way of treatment.  It's never hard watching a parent go through this..... your in my prayers!

    Welcome Ariel! Glad you had a good day in the midst of chemo!