Which UPSC Sisters haven't found us yet in our new site location?

1235

Comments

  • daisy366
    daisy366 Member Posts: 1,458 Member
    unknown said:

    This comment has been removed by the Moderator

    Patricia
    Hi Patricia,

    I respect your individuality. You are more courageous than me. I was diagnosed with stage 3a UPSC Sept 08 at age 61. I had no symptoms and it was found when apparently a cyst broke and the pain took me to the ER. After diagnosis, I was recommended to get the 6 rounds of chemo and opted for a 2nd opinion before starting anything.

    I recommend you look at the NCCN guidelines for treatment protocols. ALL papillary serous is considered HIGH RISK. Stage 1a is the only one where observation is even suggested as an option. For stage 1b THROUGH 4 they recommend chemo and/or radiation.

    I did traditional treatment (chemo) PLUS integrative (healing touch, guided imagery, meditation). I do know of people who have had miraculous results without traditional treatment but I guess, I'm not brave enough for that. I did have very good treatment response. It's been nearly 6 months since completing chemo (I didn't get radiation) and so far I'm NED. I feel and look good - everyone keeps telling me. I'm getting stronger every day. Not everyone has a bad response to chemo - I worked through mine.

    It's good to know the pros and cons of each decision. I wish you the best.

    My email is daisyelder@comcast.net

    Mary Ann
  • deanna14
    deanna14 Member Posts: 732
    roxiesmom said:

    hi Deanna and Ro,
    I live in Aliso Viejo, CA. Just south of Newport Beach. I know I'm 54, but I really think I'm 40 - like Deanna. I'm going to name drop here, only because I think it is just surreal. The actress - Annette Benning's sister is a gynocologist in Newport Beach. I could never afford to go to her because she doesn't take insurance.
    -She is a neighbor with one of my best friends.
    Who only happened to mention to her that her friend (me) had some bleeding - was that serious? Jane (Benning) told her to tell me to assume it's cancer and work backwards. I probably wouldn't have actually gone in that quickly had it not been for that. I will thank her for that one day. I went to the onc/gyn doc that she recommended after I found out how right she had been.
    My hospital is Saddleback - just because it is super close - my doctor works out of there, UC Irvine, and Long Beach Memorial. Had all the organs removed two weeks ago. Starting chemo the 19th, and scared to death. I don't know what grade I am. I know it's a tough cancer to get, but my doc is not recommending radiation, similar to a few others here.

    Deanna - did you have it anywhere other than the uterus and one node?
    Why are our therapies so different, I wonder?
    Mine was the uterus and one tube. No nodes. But I still get the barbaric chemotherapy that all of you brave soldiers have battled. I've heard such hideous things, like cancer sores in the mouth,
    puking, sore bones, I just can't wait.

    Other than what they are going to give me for all of that - any suggestions to prepare? Don't eat much before you go in?

    They tell me it's a 6 hour ordeal.
    What do you do for 6 hours? Sleep? Be sick?

    Every book I read about cancer tells me to NOT have chemo, to just get super alcaline (which I am now) and fight it with my own immune system, which there won't be much left of, after chemo.
    I'm just depressed - and so scared. It's just me and the two knuckleheads in the photo. No one else.

    I am so glad I found you!
    Susie

    All for alternative treatment...
    I am all for alternative treatment, but I also think it is not wise to ignore conventional therapies. I would definately do both if I were you. Chemo was not as bad as what people have been telling you. There are a lot of medications for the side effects. I only got really sick with one treatment and that only lasted less than a day. There is some bone and joint aching, but nothing that you can not endure. Some people just take tylenol for this, I took the pain medicine that doctor prescribed. Yes, the actual treatment takes about 6 hours. I slept and read during mine and sometimes visited with other chemo patients.
    You can do this, you are strong.
    I had UPSC in my uterus and 1 lymph node. I would get a 2nd opinion on the radiation therapy. The most current data show 3 chemos, 25 external radiation, 3 internal radiation and then 3 more chemos to be best. I would insist on the radiation treatments as well as the chemo. There isn't a lot of data for UPSC, but what there is recommends both therapies.
    Good luck and God Bless you!
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    I gained 15 pounds over my chemo rounds; lost 8 during radiation
    The steroids you take with your chemo realy make you ravenously hungry and also cause you to retain fluids, so many women gain weight over the months they have chemo. My new 'enhanced' appetite was compounded by a lack of exercise over my treatments. (Pre-cancer I always went to the gym 6 days a week and did 10 miles/day on the ellyptical. I was too tired and busy during treatment to go to the gym and so the calories I ordinarily burned off turned into a soft round belly.) They kept encouraging me to NOT diet or worry about my weight during treatment and I didn't. I was BALD; having a flat stomach didn't seem like it would make me look sexy, you know? During pelvic radiation my appetite disappeared, and although I ate the recommended 'soft diet' for radiation, I still lost 8 of the 15 chemo pounds I'd put on. Now that I am out of treatment, I am trying to lose the remaining chemo pounds,...but don't worry about your weight now.

    The most important thing you can do for yourself during chemo is to eat a high-fiber diet: a good breakfast of high-fiber cereal with fruit and nuts tossed in; a dark green salad for lunch with more fruit and nuts in ths salad; lots of raw veggies and fruits and whole grains; and 64 ounces of water each day.
  • kansasgal
    kansasgal Member Posts: 122 Member
    To treat or to wait and watch Stage 1-A
    Following my annual PAP with my PCP showing cells suspicious for endometrioid adenocarcinoma and a follow-up D&C with a gyn/onc showing endometrioid adenocarcinoma FIGO grade 1, I had a complete hysterectomy April 22 which included the removal of 9 lymph nodes and a pelvic wash but did not include removal of the omentum. My discharge pathology showed stage 1-B grade-2 endometrioid adenocarcinoma and the gyn/onc indicated no further treatment needed.

    I received the UPSC diagnosis May 19 at my one-month post-surgery check-up. Quality review of my slides found the additional UPSC in two places in the uterus. It was staged at 1-A grade-3. The gyn/onc told me the treatment would be 6 rounds of chemo which needed to begin within the next 2 weeks or so. He said UPSC used to be treated with radiation but chemo was the current treatment standard and offered a better long-term outcome. I told him I needed to do some research and get back to him with my decision. He scheduled an appointment to see me in 2 weeks.

    I spent a couple of sleepless nights reading everything I could online and contacting many people (including some doctors and even cancer specialists) near and far to help me make an informed decision on treatment (or not).

    I VERY SERIOUSLY CONSIDERED NO FURTHER TREATMENT.

    I found the paucity of clinical trials appalling. My PCP scheduled an end of the day appointment with me and my husband and reviewed all of the info I had found and tracked down "doctor only" info online while we met with her. We were at this appointment for about 2 hours.

    By the time I located and met with a gyn/onc in another state for a second opinion (he recommended adding radiation to the chemo), I had already decided to move ahead with chemo. I had my first infusion a few days after the 2nd opinion and after meeting with a local rad/onc. Now I am in my third round of chemo. I have another consultation scheduled with the rad/onc next Monday. Then I will decide whether or not to do the 4 rounds of brachytherapy currently scheduled to start August 24. Then another round of 3 chemos will be scheduled.

    If I had been staged anywhere but 1-A I FEEL (though one can never be certain!) that the decision to move ahead with treatment would have been much clearer.

    The statistics are what they are. No one really knows the future for any single patient.

    Sally
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    kansasgal said:

    To treat or to wait and watch Stage 1-A
    Following my annual PAP with my PCP showing cells suspicious for endometrioid adenocarcinoma and a follow-up D&C with a gyn/onc showing endometrioid adenocarcinoma FIGO grade 1, I had a complete hysterectomy April 22 which included the removal of 9 lymph nodes and a pelvic wash but did not include removal of the omentum. My discharge pathology showed stage 1-B grade-2 endometrioid adenocarcinoma and the gyn/onc indicated no further treatment needed.

    I received the UPSC diagnosis May 19 at my one-month post-surgery check-up. Quality review of my slides found the additional UPSC in two places in the uterus. It was staged at 1-A grade-3. The gyn/onc told me the treatment would be 6 rounds of chemo which needed to begin within the next 2 weeks or so. He said UPSC used to be treated with radiation but chemo was the current treatment standard and offered a better long-term outcome. I told him I needed to do some research and get back to him with my decision. He scheduled an appointment to see me in 2 weeks.

    I spent a couple of sleepless nights reading everything I could online and contacting many people (including some doctors and even cancer specialists) near and far to help me make an informed decision on treatment (or not).

    I VERY SERIOUSLY CONSIDERED NO FURTHER TREATMENT.

    I found the paucity of clinical trials appalling. My PCP scheduled an end of the day appointment with me and my husband and reviewed all of the info I had found and tracked down "doctor only" info online while we met with her. We were at this appointment for about 2 hours.

    By the time I located and met with a gyn/onc in another state for a second opinion (he recommended adding radiation to the chemo), I had already decided to move ahead with chemo. I had my first infusion a few days after the 2nd opinion and after meeting with a local rad/onc. Now I am in my third round of chemo. I have another consultation scheduled with the rad/onc next Monday. Then I will decide whether or not to do the 4 rounds of brachytherapy currently scheduled to start August 24. Then another round of 3 chemos will be scheduled.

    If I had been staged anywhere but 1-A I FEEL (though one can never be certain!) that the decision to move ahead with treatment would have been much clearer.

    The statistics are what they are. No one really knows the future for any single patient.

    Sally

    It's the small lymph node sampling that would decide for me.
    I had 25 lymph nodes removed when I had my surgery, with microscopic cancer found in only 1 node. I often think, 'what if they'd only removed 24 nodes and left that one in? I would have been incorrrectly staged and have active cancer still in my body. That concern would be enough to sway me towards having the chemo and radiation. But that's me. You have such a good chance for a CURE, NEVER to have cancer again with your Stage 1 diagnosis. I'd want to have that incredible peace of mind that I will never have again with my Stage III-c UPSC diagnosis. I have no long-term side effects from my chemo and radiation, so it is easier for me to be positive I did the right thing than it must be for those who have lasting side effects from their treatments. That's what makes the decision so hard. But the small size of your lymph node sampling would probably tip me into all-out aggressive adjuvant chemo and radiation. ((((BIG HUG))))). I don't envy you your decision.
  • california_artist
    california_artist Member Posts: 816 Member
    Heated chemo during surgery for recurrence
    I thought anyone looking here might be intersted in this.

    Cytoreduction and intraperitoneal heated chemotherapy for the treatment of endometrial carcinoma recurrent within the peritoneal cavity
    C.W. HELM*, C.R. TOLER*, R.S. MARTIN III†, M.E. GORDINIER*, L.P. PARKER*, D.S. METZINGER* & R.P. EDWARDS*
    Divisions of *Gynecologic Oncology and †Surgical Oncology, James Graham Brown Cancer Center, University of Louisville, Louisville, Kentucky
    Correspondence to C. William Helm, MD, Division of Gynecologic Oncology, James Graham Brown Cancer Center, 529 South Jackson Street, Louisville, KY 40202, USA. Email: cwhelm@uoflobgyn.com
    Copyright 2007, Copyright the Authors Journal compilation
    KEYWORDS
    cisplatin • hyperthermia • intraperitoneal chemotherapy • IPHC • recurrent endometrial cancer
    Helm CW, Toler CR, Martin RS III, Gordinier ME, Parker LP, Metzinger DS, Edwards RP. Cytoreduction and intraperitoneal heated chemotherapy for the treatment of endometrial carcinoma recurrent within the peritoneal cavity. Int J Gynecol Cancer 2007;17:204–209.

    ABSTRACT
    Abstract.
    Our experience with hyperthermic intraperitoneal chemotherapy (IPHC) in conjunction with surgical resection for endometrial cancer recurrent within the abdominal cavity was reviewed. Eligible patients underwent exploratory laparotomy with the aim of resecting disease to ≤5 mm maximum dimension followed immediately by intraperitoneal perfusion of cisplatin (100 mg/m2) heated to 41–43°C (105.8–109.4°F) for 1.5 h. Data for analysis was extracted from retrospective chart review. Five patients underwent surgery and IPHC between September 2002 and January 2005 for abdomino-pelvic recurrence. Original stage and histology were 1A papillary serous (1), 1C endometrioid with clear cell features (1), and 1B endometrioid (3). Mean age was 61 (41–75) years, mean prior laparotomies were 1.4 (1–2), and mean chemotherapy agent exposure was 1.6 (0–4). Mean time from initial treatment to surgery and IPHC was 47 (29–66) months. Mean length of surgery was 9.8 (7–11) h after which three patients had no residual disease and two had ≤5 mm disease. The mean duration of hospital stay was 12.6 (6–20) days. Postoperative surgical complications included wound infection with septicemia in one patient. Mean maximum postoperative serum creatinine was 1.02 (0.6–1.70) mg/dL. There was no ototoxicity or neuropathy and no perioperative mortality. No patients have been lost to follow-up. Two are living disease free at 28 and 32 m and two are living with disease at 12 and 36 m. One patient died at 3 m without evidence of cancer. Two patients who had no residual macroscopic disease at the end of surgery are alive at 32 and 36 m. The combination of IPHC with surgery for recurrent endometrial carcinoma is relatively well tolerated. The unexpectedly long survival seen in this cohort supports a phase II trial of IPHC with cisplatin for recurrent endometrial cancer.
  • deanna14
    deanna14 Member Posts: 732

    It's the small lymph node sampling that would decide for me.
    I had 25 lymph nodes removed when I had my surgery, with microscopic cancer found in only 1 node. I often think, 'what if they'd only removed 24 nodes and left that one in? I would have been incorrrectly staged and have active cancer still in my body. That concern would be enough to sway me towards having the chemo and radiation. But that's me. You have such a good chance for a CURE, NEVER to have cancer again with your Stage 1 diagnosis. I'd want to have that incredible peace of mind that I will never have again with my Stage III-c UPSC diagnosis. I have no long-term side effects from my chemo and radiation, so it is easier for me to be positive I did the right thing than it must be for those who have lasting side effects from their treatments. That's what makes the decision so hard. But the small size of your lymph node sampling would probably tip me into all-out aggressive adjuvant chemo and radiation. ((((BIG HUG))))). I don't envy you your decision.

    All out war!
    After everything that I have read about UPSC, I think at any stage I would choose to do the most aggresive treatment available. Of course, that is easier for me to say since I am finished with treatment. I was also stage IIIC.
    I agree with Linda, I don't envy your decision. My personal thought is I had to know that I had done everything I could to prevent a reoccurance.
    God Bless and Good luck with your decision.
  • kansasgal
    kansasgal Member Posts: 122 Member

    It's the small lymph node sampling that would decide for me.
    I had 25 lymph nodes removed when I had my surgery, with microscopic cancer found in only 1 node. I often think, 'what if they'd only removed 24 nodes and left that one in? I would have been incorrrectly staged and have active cancer still in my body. That concern would be enough to sway me towards having the chemo and radiation. But that's me. You have such a good chance for a CURE, NEVER to have cancer again with your Stage 1 diagnosis. I'd want to have that incredible peace of mind that I will never have again with my Stage III-c UPSC diagnosis. I have no long-term side effects from my chemo and radiation, so it is easier for me to be positive I did the right thing than it must be for those who have lasting side effects from their treatments. That's what makes the decision so hard. But the small size of your lymph node sampling would probably tip me into all-out aggressive adjuvant chemo and radiation. ((((BIG HUG))))). I don't envy you your decision.

    I Agree about the node sampling
    The tipping point for me was exactly that! The gyn/onc was, of course, not thinking of UPSC at the time of my surgery or he would have removed more lymph nodes and the omentum as well.

    The reason I am leaning strongly toward vaginal brachytherapy is the fact that the UPSC was found in 2 places in the uterus, and one of those places was where the "top" of the cervix meets the neck of the uterus. I can't help but think that UPSC cells could have migrated through the cervix to the vaginal cuff region. The rad/onc at my first visit agreed with me that this seemed like a possibility and it seemed reasonable to use radiation in this area. We will discuss this again on Monday. Hopefully by then he will have completed his research!

    Thanks, Linda, for your input.

    Sally
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    kansasgal said:

    I Agree about the node sampling
    The tipping point for me was exactly that! The gyn/onc was, of course, not thinking of UPSC at the time of my surgery or he would have removed more lymph nodes and the omentum as well.

    The reason I am leaning strongly toward vaginal brachytherapy is the fact that the UPSC was found in 2 places in the uterus, and one of those places was where the "top" of the cervix meets the neck of the uterus. I can't help but think that UPSC cells could have migrated through the cervix to the vaginal cuff region. The rad/onc at my first visit agreed with me that this seemed like a possibility and it seemed reasonable to use radiation in this area. We will discuss this again on Monday. Hopefully by then he will have completed his research!

    Thanks, Linda, for your input.

    Sally

    Good girl, Sally! Get your battle plan ready and FIGHT!
    I almost skipped the vaginal brachy because I so feared compromising my sex life long-term. I CRIED about it!! Now, 6 weeks after my last bracy treatment, I know that I made the right decision to go ahead and have the brachy. I use a vaginal dilator daily (and be SURE and talk to your radiation oncologist about that since many of them never bring it up!) now and I am just fine sexually. So don't let the 'scar tissue' fears keep you from brachy; you can be proactive about the healing process and come out of this unscathed. And if you had any cancer cells anywhere in the lower region of your reproductive system, brachy is an important treatment consideration. I know that UPSC cells 'migrate' downward, as my cancer was initially suspected when a 'migrating' UPSC cell showed up on a routine annual PAP test. That's what made me decide to have the brachy radiation, even though my cancer was all up higher. So I did both, external pelvic (because I had 1 removed lymph node with cancer cells) and internal brachy; in addition to the chemo.
  • susie1143
    susie1143 Member Posts: 105
    kansasgal said:

    I Agree about the node sampling
    The tipping point for me was exactly that! The gyn/onc was, of course, not thinking of UPSC at the time of my surgery or he would have removed more lymph nodes and the omentum as well.

    The reason I am leaning strongly toward vaginal brachytherapy is the fact that the UPSC was found in 2 places in the uterus, and one of those places was where the "top" of the cervix meets the neck of the uterus. I can't help but think that UPSC cells could have migrated through the cervix to the vaginal cuff region. The rad/onc at my first visit agreed with me that this seemed like a possibility and it seemed reasonable to use radiation in this area. We will discuss this again on Monday. Hopefully by then he will have completed his research!

    Thanks, Linda, for your input.

    Sally

    Treatment
    I have just been recently diagnosed with uterine cancer. The D&C was completed on July 24th. I am scheduled for surgery on the 26th of Aug so at this time we're not sure if it has spread. The doctor is removing everything since the cell grade is a 3 and is very aggressive. He hasn't told me what treatment will be necessary until after the surgery but I'm pretty sure chemo and radiation will be in my future. My mother is in remission from breast cancer and an aunt died of lung cancer so as a prior caretaker I know the routine. I'm 48 so most of my symptoms appeared to be menopause related and the only way we found it was an abnormal pap test followed by a D&C. The D&C was not even completed due to the location and size of the cancer mass

    Any advice would be helpful. I've done research but until I have my surgery I won't know what stage I'm in. I've already went to the local Cancer Society and got wigs, etc for chemo since the cells are Grade 3.
  • kansasgal
    kansasgal Member Posts: 122 Member
    Thanks Linda and Deanna
    Linda, thanks so much for your detailed post-brachy dilator use tips. I have already printed them out to take with me to my appt Monday.

    Linda - I was surprised by, “So far, so good.” I would have expected jumping up and down with joy singing some Hosannas!

    Deanna - Wow, you, too have reached a wondrous milestone! BIG, BIG GRIN!
  • kansasgal
    kansasgal Member Posts: 122 Member
    susie1143 said:

    Treatment
    I have just been recently diagnosed with uterine cancer. The D&C was completed on July 24th. I am scheduled for surgery on the 26th of Aug so at this time we're not sure if it has spread. The doctor is removing everything since the cell grade is a 3 and is very aggressive. He hasn't told me what treatment will be necessary until after the surgery but I'm pretty sure chemo and radiation will be in my future. My mother is in remission from breast cancer and an aunt died of lung cancer so as a prior caretaker I know the routine. I'm 48 so most of my symptoms appeared to be menopause related and the only way we found it was an abnormal pap test followed by a D&C. The D&C was not even completed due to the location and size of the cancer mass

    Any advice would be helpful. I've done research but until I have my surgery I won't know what stage I'm in. I've already went to the local Cancer Society and got wigs, etc for chemo since the cells are Grade 3.

    Susie
    As soon as I had the PAP test result I was ready to skip the D&C and move straight to a complete hysterectomy the next day. Of course it does not work that way. Waiting is the pits! I always say, "Just tell me the worst, and I'll deal with it! Please don't make me wait and speculate!"

    A BIG HUG while we wait impatiently with you for the pathology report following your surgery. That will help guide your future choices.

    Sally
  • deanna14
    deanna14 Member Posts: 732
    susie1143 said:

    Treatment
    I have just been recently diagnosed with uterine cancer. The D&C was completed on July 24th. I am scheduled for surgery on the 26th of Aug so at this time we're not sure if it has spread. The doctor is removing everything since the cell grade is a 3 and is very aggressive. He hasn't told me what treatment will be necessary until after the surgery but I'm pretty sure chemo and radiation will be in my future. My mother is in remission from breast cancer and an aunt died of lung cancer so as a prior caretaker I know the routine. I'm 48 so most of my symptoms appeared to be menopause related and the only way we found it was an abnormal pap test followed by a D&C. The D&C was not even completed due to the location and size of the cancer mass

    Any advice would be helpful. I've done research but until I have my surgery I won't know what stage I'm in. I've already went to the local Cancer Society and got wigs, etc for chemo since the cells are Grade 3.

    Big hugs to you Susie!
    Have you read the article Claudia posted about heated chemo in the peritoneal/abdominal cavity at the time of surgery? It is mainly talking about using this method if there is a reoccurance and a second debulking surgery. Might be worth talking to your gyn/onc if it is possible to do it with the initial debulking surgery.
    God Bless you!
  • susie1143
    susie1143 Member Posts: 105
    roxiesmom said:

    hi, I'm new.
    my name is Susie, and I am registered here with a photo, but not
    sure where exactly I am on the site. I put in that my cancer was Uterine,
    but UPSC isn't a category. I want to wind everything back to just early
    June, when I had never heard of any of this stuff.

    I just wish I was as far along as you are.
    my email is susieakins@cox.net.

    thanks Linda,
    Susie

    Just diagnosed
    Hi Susie:
    I'm also a Susie and was just diagnosed in July. I'm scheduled for surgery on Aug 26th so I'll know more once the surgery is completed as far as the cancer spreading. However, I do know that my cell is a Grade 3 so I'll probably have chemo and radiation. Have you contacted your local American Cancer Society office? They can give you lots of help. My mother is in remission from breast cancer so I know about being a caretaker and it's hard for me to believe that I'm now the patient. So far I have much support between family members and my church and I'm on many prayer chains. I just signed up today for this site and so far I can see the support is awesome. It's important for us to discuss our issues with this and any help from those who have already gone through surgery, chemo, radiation so that we know what to expect.

    Since we're both new I'm not sure of how to do it but maybe we could keep in contact with each other as we go through our treatments so that we can encourage each other.
  • susie1143
    susie1143 Member Posts: 105
    kansasgal said:

    Susie
    As soon as I had the PAP test result I was ready to skip the D&C and move straight to a complete hysterectomy the next day. Of course it does not work that way. Waiting is the pits! I always say, "Just tell me the worst, and I'll deal with it! Please don't make me wait and speculate!"

    A BIG HUG while we wait impatiently with you for the pathology report following your surgery. That will help guide your future choices.

    Sally

    Thanks for your support.
    Thanks for your support. You're absolutely right about waiting. It seems like forever before Aug 26th is here and I know more about the stage and treatment options. I'm doing a lot of research about uterine cancer but it's hard since I don't have more information until that surgery.
  • susie1143
    susie1143 Member Posts: 105
    deanna14 said:

    Big hugs to you Susie!
    Have you read the article Claudia posted about heated chemo in the peritoneal/abdominal cavity at the time of surgery? It is mainly talking about using this method if there is a reoccurance and a second debulking surgery. Might be worth talking to your gyn/onc if it is possible to do it with the initial debulking surgery.
    God Bless you!

    Thank you for the
    Thank you for the information. Where is the article? I only signed up today.
  • kansasgal said:

    Thanks Linda and Deanna
    Linda, thanks so much for your detailed post-brachy dilator use tips. I have already printed them out to take with me to my appt Monday.

    Linda - I was surprised by, “So far, so good.” I would have expected jumping up and down with joy singing some Hosannas!

    Deanna - Wow, you, too have reached a wondrous milestone! BIG, BIG GRIN!

    This comment has been removed by the Moderator
  • roxiesmom
    roxiesmom Member Posts: 5
    hi Susie
    other Susie here.
    You're waiting for your surgery on the 26th, I'm starting my first chemo this wednesday, the 19th.

    I am too new to offer much advice, other than to tell you the worst part of my surgery was waking up. That was a little tough. But once that morphine drip kicks in, you forget all about it.

    Bring comfortable walking shoes with gym socks. - And lip gloss, so you look good for visitors.
    -Slip on's, but not slippers. That way you can get your sore tummy out of bed and walk walk walk. Everyone else doing their walking rounds pointed at my white slip-on keds, like "Wow - she can really walk". I walked all over that place.
    I only had to spend two nights there - all the walking I did got things moving around to let me go home.

    I didn't poop for almost a week and thought I was going to die, so don't think you are the only one. If you don't abuse laxatives, post surgery will be the time to realize their usefulness. I ate nothing but fruit and fiber, but that alone was not enough. Don't wait like me until day 5 to realize that you need more help than that.

    I had 5 organs removed, but I also have two dogs that didn't care. They made me walk even more- which really helped everything. Do everything you can to stay alkaline. You can get urine-test strips from the drug or health-food store. Since I got the water ionizer, I am peeing alkaline for the first time ever for me.
    Don't eat meat, fish or dairy for the immediate future. Get a water ionizer, or drink plain filtered tap water -nothing bottled. And drink a ton of it. Tap water by law has to be ph neutral. None of the bottled waters are - I've seen them all tested. They are all acidic. Some are almost as bad as soda pop which is almost as bad as meat.
    No refined sugar. No artificial sugars. No soda pop. Fructose sweetened anything is fine. Nothing with "enriched" flour. For bread - try to stick with whole wheat. I just started all of this because I was actually considering not having chemo. Now I know how stupid that was. I need it, but I also needed some major changes in my diet that cancer has forced me to make. I love barbeque everything, but now I have to be vegan. There are things that we ourselves can do to help kick cancer's ****.

    I would rather make my body be so tumor unfriendly that even if a cell slips by the chemo, my body is no longer a good host.

    I ate and drank everything cancer thrives on, and gee - what I surprise, I got it.

    I just got my wig from the cutest 65ish lady that looks like the owner of a wig shop- She is 14 years post-op, looks like a million bucks, and advised me: "whatever we get - they keep coming up with new things to keep us alive."
    She had advanced stage breast cancer and she was never supposed to live this long, but she's great! She had to go back a couple times, but they killed whatever it was each time, and she's a hot mama.

    You'll be fine with what you have ahead of you - me - not so sure. Just the thought of nausea makes me nauseous. -ugh!

    take care and look forward to hearing how your surgery goes,
    bye!
    Susie
  • susie1143
    susie1143 Member Posts: 105
    roxiesmom said:

    hi Susie
    other Susie here.
    You're waiting for your surgery on the 26th, I'm starting my first chemo this wednesday, the 19th.

    I am too new to offer much advice, other than to tell you the worst part of my surgery was waking up. That was a little tough. But once that morphine drip kicks in, you forget all about it.

    Bring comfortable walking shoes with gym socks. - And lip gloss, so you look good for visitors.
    -Slip on's, but not slippers. That way you can get your sore tummy out of bed and walk walk walk. Everyone else doing their walking rounds pointed at my white slip-on keds, like "Wow - she can really walk". I walked all over that place.
    I only had to spend two nights there - all the walking I did got things moving around to let me go home.

    I didn't poop for almost a week and thought I was going to die, so don't think you are the only one. If you don't abuse laxatives, post surgery will be the time to realize their usefulness. I ate nothing but fruit and fiber, but that alone was not enough. Don't wait like me until day 5 to realize that you need more help than that.

    I had 5 organs removed, but I also have two dogs that didn't care. They made me walk even more- which really helped everything. Do everything you can to stay alkaline. You can get urine-test strips from the drug or health-food store. Since I got the water ionizer, I am peeing alkaline for the first time ever for me.
    Don't eat meat, fish or dairy for the immediate future. Get a water ionizer, or drink plain filtered tap water -nothing bottled. And drink a ton of it. Tap water by law has to be ph neutral. None of the bottled waters are - I've seen them all tested. They are all acidic. Some are almost as bad as soda pop which is almost as bad as meat.
    No refined sugar. No artificial sugars. No soda pop. Fructose sweetened anything is fine. Nothing with "enriched" flour. For bread - try to stick with whole wheat. I just started all of this because I was actually considering not having chemo. Now I know how stupid that was. I need it, but I also needed some major changes in my diet that cancer has forced me to make. I love barbeque everything, but now I have to be vegan. There are things that we ourselves can do to help kick cancer's ****.

    I would rather make my body be so tumor unfriendly that even if a cell slips by the chemo, my body is no longer a good host.

    I ate and drank everything cancer thrives on, and gee - what I surprise, I got it.

    I just got my wig from the cutest 65ish lady that looks like the owner of a wig shop- She is 14 years post-op, looks like a million bucks, and advised me: "whatever we get - they keep coming up with new things to keep us alive."
    She had advanced stage breast cancer and she was never supposed to live this long, but she's great! She had to go back a couple times, but they killed whatever it was each time, and she's a hot mama.

    You'll be fine with what you have ahead of you - me - not so sure. Just the thought of nausea makes me nauseous. -ugh!

    take care and look forward to hearing how your surgery goes,
    bye!
    Susie

    Thanks for the advise of upcoming surgery
    Hi Suzie, it's Susie.

    Thank you for your advise regarding the upcoming surgery. I'm no stranger to surgery especially in the ab area. This will actually be my 8th surgery in that area. I've had 2 C-sections, left kidney removed (not related to any cancer, due to UTI's), stomach surgery for hernia repair, tubes tied and recently my D&C. Of course with the C-sections I was much younger. I actually surprised the staff when I had my kidney removed because I was up and about very fast so I know that I'll be walking, walking and walking after the surgery.

    I've been on the internet looking for diets that will kill the cancer cells. Because I'm always on a diet to lose weight and have PCOS I don't eat many carbs but I need to cut the meat out of my routine. In my case I believe the PCOS is the cause of my cancer. PCOS is short Poly cystic Ovarian Syndrome and only 5% of women have it. I make too much estrogen hence the cancer. Most women with PCOS can not have children but as you can see by previous surgeries I have 2 sons. I do have low sugar so I need the protein. However, lately I've been finding that I don't want beef and have been eating more chicken. I love (low-fat)cheese and eat that for snacks as well as yogurt.

    I'm going to take your advise regarding water. I used to have a filter on my tap water but since I moved I haven't brought a new one. I'll do that this week since I do drink a lot of water. (I have to be careful not to overdo since I only have 1 kidney). I like Crystal Lite so I'm going to drink water with lemon juice.

    Also, since dieting I eat whole wheat bread, brown rice and lots of vegetables. Doing research some vegetables are know to kill the cancer cells including broccoli, cauliflower, asparagus, spinach which I was eating prior to my diagnosis. I have noticed that I feel much better when I stick to this routine. I don't drink much soda but I do use Splendar instead of sugar. I'm thinking of switching to honey.

    Do you or anyone else know if soy is ok? I'm considering replacing my protein with soy but wasn't sure if it is ok.

    Since my mother had breast cancer and I was the caretaker, I know the routine. We never thought that we would get through her treatments but here it is 7 years later. I joke with her and said that now it's her turn to take care of me.

    For the nausea try ginger (which online I found out also kills cancer cells). You can buy ginger tea at a health food store. Also, talk to your doctor if you have problems with the tummy, they have medicine to help control nausea. Since I had the stomach surgery for my hernia I'm not allowed to get sick. This could prove interesting.

    Also, my mother suggested that during chemo you suck on popsicles to help prevent mouth sores. (She was in NJ during her treatment and that's what they told her). She also said that if you get a headache to let the nurse know because they may be doing the chemo too fast. If I need chemo she's going to come with me the first time to give me pointers.

    I already went to the American Cancer Society and got 2 wigs and several head covers like scarves. Even though the doctor hasn't told me that chemo is definite he did say that since my cell Grade is aggressive and I'll probably need chemo.

    I'm not so much nervous about the surgery, I just want to know if the cancer is anywhere else. The waiting for me is the worst but I have my faith in God that Jesus will carry me through.

    Let me now how you make out on your first chemo treatment. God bless you in your upcoming battle.

    Susie
  • cc1212
    cc1212 Member Posts: 3
    UPSC4b
    Hi. I just found CSN a week ago and posted about 5 days ago. Problem is I can't find my post or any possible replies. Will you please help me get on board? Cecile