New to this Camp

Charissa

TeddyandBears_Mom said:

Charissa, I completely agree

Charissa, I completely agree with the other ladies' posts. Just wanted to welcome you to the board and say that you will find some amazing strength throughout this journey. I am 5 months out from my last chemo and 4 months out from my last radiation. Feeling pretty darn good these days.

If you are really curious about the chemo effects, there is a thread titled 'Ladies going through chemo.....' where several of us documented our chemo journey. There is another thread about radiation but I can't remember the actual title. Both of these were set up sometime after July of last year. This might help you gain a better understanding and ease your mind.

We are here for you. Please ask us anything. Someone will have an answer!

Love and Hugs,

Cindi

Awe, thank you, Cindi. This

Awe, thank you, Cindi. This is overwhelming and such a surprise. I can't believe I have so many replies. I started replying from the begining, not scrolling down, just simply replying. After my last post and with it getting later, I thought I should see how many more replies I will be responding to. Oh my goodness, they go on and on.  I'm going to have to continue reading them through tomorrow. What a BLESSING!!! I am literally crying tears of joy! You guys are the BEST!!! I will grab my fresh squeezed juice and jump on here in the a.m.

I will definitely begin reading the thread of journals on chemotherapy and radiation. Thank you, to you and everyone else, who commited to doing this for us. It is encouraging to hear you are feeling pretty good, with that length of treatment. I don't even know what is normal treatment - weeks, months, or years, or how it all works. I'm sure I will have questions, as each day unfolds. I will be sure to share with all of you my lab results, as I'm not sure I will understand them. The only thing better to finding this site, would be me taking each of you to my next appointment through Facetime. Lol!

Thank you, so much, for your time in replying, for your hugs, and love. I'm definitely feeling loved. Muuuaahhh!

Charissa

Red Corvette said:

Part 2

Dont be afraid of having to do chemotherapy. It's no walk in the park but is completely doable. My wife just finished frontline chemo and so far has come through ok. We were completely scared about treatment but my wife's gyneoncologist and everyone here pulled us though. Hang in there and try and take things one day and one step at a time.

No matter what your stage of cancer turns out to be you will have many options and many many goods days ahead.

Lastly stay OFF THE INTERNET! The information is mostly wrong, old, and of little value.

Red Corvette

Thank you, for your input and

Thank you, for your input and reassurance. I'm in! This is exactly what I needed - to hear from others who have been there, done it, and are still alive to tell about it. Again, this is ALL new to me. I do live close enough to commute either to UC Davis and/or Standford University in California.  But, I really like my oncologist too in Sacramento/Roseville area.  However, when I did ask him about a diet plan he couldn't offer me one, which kind of disappointed me. But, I do have a nutritionist, out of San Francisco, that is willing to help with supplements and diet.  Are we allowed to say who our oncolgist is to see if anyone has heard of him?

You're too funny! I can hear you sternly saying "STAY OFF THE INTERNET!" in the same way my daughters, friends, and family have told me.  Okay, okay, I will! Thank you, for the great advice. Now that I found you guys, I think I can pretty much get all my information from here - and most importanlty the truth!

Blessings to you, Red Corvette, and your dear wife.

Charissa

EZLiving66 said:

Hello, Charissa!!  Welcome to

Hello, Charissa!!  Welcome to the club that nobody wants to be a member of.  But, I'm glad you found us and as the other ladies have stated, if you have any questions, pretty much nothing is off limits.  I'm Eldri, 63, from Green Bay, WI.  I had no symptoms, just a feeling something wasn't right.  I had to change GPs just to get a referral to a gynocologist who did an endometrial biopsy and found cancer.  The hysterectomy was the easiest surgery I've ever had - DiVinci robot - and I literally danced out of the hospital the next day.  I was Stage II, Grade 3 UPSC and although my gyno/oncologist thought he got it all during surgery, I made it through three chemos.  He did not recommend radiation.  

I totally agree with the other ladies - talk to your doctor, get a second opinion and learn all you can about your cancer.  When I first read the statistics, I was certain I'd be dead in a month but those were so old.  Things have changed so much in the past few years and new treatments are being tested all the time.

We're here for you!!!

Love,

Eldri

Awe, Eldri, thank you for the

Awe, Eldri, thank you for the warm welcome and for sharing your story. I, too, jumped up when the oncologist entered my hospital room and gave him a great BIG hug! The recovery has been relatively easy, other than at night I have TONS of swelling from being up too long throughout the day. It's amazing how medical technology has advanced. I have people telling me I'm doing too much, but I feel so good. I am NOT lifting anything over 10 lbs, but do walk, make meals, switch the laundry, do dishes, and then rest sitting most of the day. I'm itching to get out to my garden and pick the weeds. My sugery was 9 days ago.

I had no idea what robotic surgery was, until yesterday when I watched a video for the first time. I was like, "Are you kidding me?  This is what my oncologist did? Wow!" I guess he has to be pretty good, since he has tons of experience doing these. I ended up with him becuase my OBGyn made the mistake of underdiagnosing my condition as a polyp and let me go on vacation for a month believing it was no big deal.  Upon my return from vacation, she tried to remove it with no success; then when the lab results came, she must have slightly panicked. Anyway, that worked out in my favor, as she made a couple phone calls and I was having my CT scan the next day and two days later in with an oncologist (out of town) she found to take me - since everyone in our town was booked out through June.  And, seven days later the DaVinci radical hysterectomy.

You are too funny. I thought the same thing - I only had weeks to months to live. After I read everything on-line, I called my daughters into my room and broke the news to them. We all three laid on my bed crying, talking about some very difficult things. They made me promise to not get back on there. So, I chose to Google "Type II Uterine Cancer Survivors" and found you guys. This was the only site that gave me hope.  I am so grateful to have found you guys and sincerely appreciate you being here for me/us. What a blessing all of you are!!! Thank you, for sharing your time, wisdom, and experiences with all of us. Love and hugs to you.

joyce6611

Charissa said:

Awe, Eldri, thank you for the

Awe, Eldri, thank you for the warm welcome and for sharing your story. I, too, jumped up when the oncologist entered my hospital room and gave him a great BIG hug! The recovery has been relatively easy, other than at night I have TONS of swelling from being up too long throughout the day. It's amazing how medical technology has advanced. I have people telling me I'm doing too much, but I feel so good. I am NOT lifting anything over 10 lbs, but do walk, make meals, switch the laundry, do dishes, and then rest sitting most of the day. I'm itching to get out to my garden and pick the weeds. My sugery was 9 days ago.

I had no idea what robotic surgery was, until yesterday when I watched a video for the first time. I was like, "Are you kidding me?  This is what my oncologist did? Wow!" I guess he has to be pretty good, since he has tons of experience doing these. I ended up with him becuase my OBGyn made the mistake of underdiagnosing my condition as a polyp and let me go on vacation for a month believing it was no big deal.  Upon my return from vacation, she tried to remove it with no success; then when the lab results came, she must have slightly panicked. Anyway, that worked out in my favor, as she made a couple phone calls and I was having my CT scan the next day and two days later in with an oncologist (out of town) she found to take me - since everyone in our town was booked out through June.  And, seven days later the DaVinci radical hysterectomy.

You are too funny. I thought the same thing - I only had weeks to months to live. After I read everything on-line, I called my daughters into my room and broke the news to them. We all three laid on my bed crying, talking about some very difficult things. They made me promise to not get back on there. So, I chose to Google "Type II Uterine Cancer Survivors" and found you guys. This was the only site that gave me hope.  I am so grateful to have found you guys and sincerely appreciate you being here for me/us. What a blessing all of you are!!! Thank you, for sharing your time, wisdom, and experiences with all of us. Love and hugs to you.

Welcome

Welcome Charissa!  I had a stage 1b endometrial cancer in 2012 and received brachytherapy.  I had recurrence in 10/15.  I am now receiving chemo.  The chemo has been very easy for me.  I have never been sick with it, only a little tired.  Two months ago they put me on Metformin, which is a diabetic drug which clinical studies are showing that it can put cancer into remission.  My lung nodules shrunk to half their size with only one month of Metformin.  Although, I have endometrial stage 4 metastatic to both lungs, I feel wonderful.  I live each day to the fullest and expect to go into remission any day.  Attitude is so important when you are dealing with this.  I am so glad you found our group.  Everyone is so supportive.  I will be praying for you!

Hugs!

Joyce

 

Unknown

ConnieSW said:

Martha

I'm so glad you said this.  I've learned a lot from the Internet research I've done.  I'm constantly on the lookout for new studies but careful to check their validity.

outdated internet research

I do a lot of searching on the internet too, but I'm always checking the date when the study or opinion was published.  There are so many advances and new statistics in cancer, so when I read a study even done in 2012 I tend to not read as much into it when they mention statistics because that usually is from a study done 5 years earlier.  I also realize that just because our cancer doesn't have a good statistic rate, many of us are at an advanced age, and (if I read this right), if you die from something else before you reach 5 years with no recurrance, you still are listed as a statistic death from uterine cancer.  Hugs Nancy

Soup52

Finding out you have cancer

Finding out you have cancer is a shock and devastating news, but rest assured you have found an awesome group for support and info. I am stage 111c and an aggressive clear cell cancer. I have had robotic surgery, 5 weeks of radiation external and 3 internal, brachytherapy. I have also had 5 chemo with just one carbo taxol to go. I'm alive and kicking. Chemo isn't fun, but you'll find everyone has different affects. For me the week of chemo is usually my worst, but I've never thrown up. They give you anti nausea meds that really help. You will find much info on this site to help you with chemo should you need it. There is a whole thread termed women going through chemo. Also those of us still going through chemo may post there or elsewhere on this board. We will all be with you on your journey!

Editgrl

Charissa said:

Awe, thank you, Cindi. This

Awe, thank you, Cindi. This is overwhelming and such a surprise. I can't believe I have so many replies. I started replying from the begining, not scrolling down, just simply replying. After my last post and with it getting later, I thought I should see how many more replies I will be responding to. Oh my goodness, they go on and on.  I'm going to have to continue reading them through tomorrow. What a BLESSING!!! I am literally crying tears of joy! You guys are the BEST!!! I will grab my fresh squeezed juice and jump on here in the a.m.

I will definitely begin reading the thread of journals on chemotherapy and radiation. Thank you, to you and everyone else, who commited to doing this for us. It is encouraging to hear you are feeling pretty good, with that length of treatment. I don't even know what is normal treatment - weeks, months, or years, or how it all works. I'm sure I will have questions, as each day unfolds. I will be sure to share with all of you my lab results, as I'm not sure I will understand them. The only thing better to finding this site, would be me taking each of you to my next appointment through Facetime. Lol!

Thank you, so much, for your time in replying, for your hugs, and love. I'm definitely feeling loved. Muuuaahhh!

The thread on radiation

is titled "Let's talk about radiation."  

SandyD

Hi Charissa,

Hi Charissa,

It's devastating to get a cancer diagnosis no matter what. Then when you start looking online about your type of cancer and see statistics (even though they're generally old stats and include women with a variety of characteristics such as type or amount of treatment, age, stage, etc.) it's even more terrifying. It's helpful to keep in mind that these stats generally don't represent the specifics of your case. What I've found is more relevant is first finding the best possible medical support team and learning from the collective wisdom of others who have personally dealt with similar conditions such as the women you'll find on this board. For me, the more I read the experiences of other women, including those diagnosed at more advanced stages, the more I felt like this is do-able! It's natural for you to experience fear and of feeling overwhelmed but I hope you'll be comforted in contemplating how many women are making it through treatment and have gotten to the other side and going on to not only surviving it all but having a high quality of life. I myself just learned that I'm in remission after treatment (radical hysterectomy, 6 rounds of chemo with taxol/carboplatin, and internal radiation/brachtherapy). Although I was fortunate to be diagnosed Stage 1A I had 2 forms of highly aggressive grade 3 uterine cancer, both carcinosarcoma and papillary serous.

Sandy

Editgrl

Charissa said:

Thank you, Chris, for the

Thank you, Chris, for the encouraging message. I have spent the past day talking with my oncologist's nurse, as well as a holistic doctor in San Francisco. My holistic doctor is not opposed to conventional treatment alongside his treatment (diet, supplements, vitamin C intravenous, and many other tricks up his sleeve). The oncologist's nurse said standard Chemo usually consists of a six cycle treatment, one cycle every 21 days. Again, this is standard, and my situation may be different depending on the pathology results.  But, that would be doable. Again, this is all new to me. I appreciate you guys encouraging me forward, and thoroughly understanding the process - this being the most scariest time.

When I started reading things on-line, I thought my riding days were over. I actually contacted the previous owner, as she has first right of refusal, and informed her of what was taking place.  But, now, after finding this group, I'm thinking I may be able to climb up on my big boy again. He is a gentle Tennessee Walker that loves to explore the trails. I joke around calling him my "Christopher Columbus." Are you back riding yet?  My two teenage daughters enjoy the English world, riding in 3-Day events.  I actually started taking dressage lessons, prior to this diagnosis. That can become very addicting. Lol!

Love and BIG hugs to you!

You will be back in the saddle!

Charissa, yes, I am back riding again.  My own horse, a 27-year-old Thoroughbred has been having a tough time with some foot/pastern problems during the last year.  In the meantime, I have a couple of horses, a pony and a Belgian/Thoroughbred cross at my disposal.  I am tiny, so the pony works for me and the Belgian/Thoroughbred cross is a workout for my legs!

It may be a while after surgery before you feel like getting back on your horse, but it will happen.  Even during chemo, there were times I felt well enough to ride.  Especially a Tennessee Walker.  I have ridden a couple and they are so smooth.

I think in one of your other posts you mentioned Dr. Cowan?  Is that who you are consulting with in S.F.?  He was one of the doctors recommended to me when I was looking for a naturopathic oncologist.

Hang in there... 

Chris

 

Charissa

Kvdyson said:

Welcome Charissa

Welcome, Charissa. I am so sorry that you have received this diagnosis and hope that you know feel welcome to ask any questions here.

I was in your shoes just 9 months ago. Feeling overwhelmed by my diagnosis of stage 1b, grade 3 carcinosarcoma (aka MMMT). The information I found on Dr. Google was devastating. Then I started to join sites like this one and found out the truth from those who were living with - and beating - this beast.

I have chosen to go with the "standard of care" front-line treatment for my diagnosis - surgery, chemo and radiation - to ensure that I can look back and have no regrets that I missed an opportunity to stop this beast in its tracks. The side effects have been minimal and I have continued to work full time during them. Of course, not everyone reacts the same to the treatments but it is very unlikely that the standard of care would result in hastening a death from the beast.

Each of us has to chose our own paths when we receive this devastating news. Please know that we will support you in whatever path you choose. We just ask that you make that decision based on the scientifically proven facts and not from a place of fear or from hearsay.

Wishing you peace and strength, Kim

Surgery: TAH & BSO, 14 lymph nodes excised, 10.5 cm - Sept 2015; 47 years old
Dx: Uterine carcinosarcoma (MMMT) Stage 1b, Grade 3 - Sept 2015
Frontline: Chemo (Taxol-day 1 & Ifosfamide/Mesna-days 1-3) - 6 rounds - Dec 2015 - May 2016
Radiation - external, 28 treatments, completed Mar 2016

Thank you, Kim, for your

Thank you, Kim, for your sweet, encouraging, and honest message. After doing much research over the past two days, I have elected to go with the chemo and radiation treatment, alongside holistic approaches. I'm not sure what that is going to look like, but feel like it is what will work best for me. I started a Cancer Prevention Diet last week. It's pretty restrictive, but doable. It helps my mind remain at ease, that I'm not feeding or fertilzing any part of the "Beast" that may be left behind.

Did you loose your hair? This is going to be hard for me, as my hair has always been what helps me feel pretty about myself. Do you recommend it be shaved off or just let it fall out on its own? I think if it were to come out in patches, I would panic. This will be a good test for me, but a hard one. Your bandana is really pretty. I've always liked them, but never felt they looked good on me. Wow, now no excuses, huh? I guess I get to stock my wardrobe with a bunch of cute headbands. And, like the nurse reminded me today - it's TEMPORARY!

Love, hugs, and I will keep you guys updated on my pathology report. Thank you, so much, for being here for me and all the others. Feeling blessed to have a new set of friends.

Charissa

debrajo said:

Welcome!

Again, Welcome!  I'm Debra(Jo) and I am another UPSC.  That would make me a TypeII.Grade 3,1a Stage.  I was diagnosed in July of 2009....yep, '09!  Still here, still NED and for an old bitty, not doing so bad!  We are all here to help, nothing is off topic or TMI...we even have a couple of gentlemen here, God Bless them!  Don't try to see the big picture, stay off Google, ditch the friend, slow down.  Tomorrow is not promised for anyone!  Do make diet changes, look into the supplements used by the ladies here,keep exercising, and just tweek your life as you go about living it!  Best, Debra

Great advice, sweet Debra.

Great advice, sweet Debra. Thank you. And, WOW, NED since 2009? Thank you, from the bottom of my heart, for remaining committed to this group. Us newcomers to this group need you pioneer women to lead us, comfort us, educate us, support us, and understand us. What a blessing.

I added shark cartlidge to my supplements, I already take Curcumin (supposedly just as good as turmeric), along with many other supplements. I'd be curious to see, though, some of the other supplements that are working for women with our same diagnosis. Do I just do a search on here? I started a pretty restrictive Cancer Prevention Diet from a dietician at my holistic doctors office. Not sure there is much more I can do before chemo begins.

It is only through this group that I have gained hope of possibly beating this. My daughters and hubby are so glad I found all of you. I'm now talking like a warrior woman who is battling the enemy. And, you're right - we are not promised tomorrow. I could leave my driveway and be hit and killed at any time. That has been the BIGGEST lesson learned so far - "Live for Today!"  We need to make the most of each day, recognizing all the blessings and not let the enemy steal our joy. 

And, not to store up for tomorrow. I have two daughters I home school - ages 14 & 16. I started gathering books and crafts that I wanted to do when they went off to college. Then, I get this diagnosis. Qucikly, it brought everything back into perspective. Funny, how everything was a need until this diagnosis.

Thank you, sweet Debra. Hugs and love to you.

Charissa

Hopeful162 said:

Internet Research

Welcome! I don't like to disagree with the excellent advice given by the ladies here, but we are each different, and I don't think it is necessary to stay away from the legitimate medical sites on the Internet if you want to know more about what you are up against with your diagnosis. In fact, my gynecologist printed out some articles on UPSC to give to me when my biopsy came out positive. And my gyn oncologist said it was fine to do some research and even said go ahead and look up some YouTube videos on daVinci hysterectomies.

I ended up with Stage 1A, Grade 3 UPSC, which meant chemo, but it was not nearly as difficult as I had imagined before I knew anything about cancer or its treatment. I am now about 16 months NED post treatment. My point is, if you are one that likes to research and know what's going on, go ahead and read, just pay attention to the sources. I have learned so much from internet sites as well as from ladies on this forum.

Martha, North East US

Thank you, Martha, for your

Thank you, Martha, for your encouragement. I understand where each of you are coming from. I think in the beginning it is hard to sort through the sources on-line, understand everything before you (as it is all completely a foreign language to us), and be able to weed out what is old news and new news. You feel so tiny and ill-equpped to even know where to begin - there is soooo much information out there. Like you mentioned, sticking to reliable resources and information is the best. However, until the pathology report actually comes, it's so hard not having an understanding of how your world changed so drastically after that initial phone call.

I ended up changing my Google searches to positive - cures, survivors, etc. and found you guys!!! When reading through the many posts here, I write down words (new to me) and Google those. It would be nice if there was a site that had reliable, updated information and resources on it. But, that would take daily monitoring and updating - much work.  In the meantime, we have eachother - people who have been through it, who are going through it, who understand it, and can coach, support, and walk us through it. Feeling so blessed!

Thank you, to you too, for sticking with this group being 16 months NED. We need you women. You give us hope, wisdom, and strength to keep persevering. I couldn't be more grateful for finding all of you. I will have many questions, as each day unfolds. I sincerely appreciate everyones honesty and support.

Love and hugs to you.

Charissa

ConnieSW said:

Martha

I'm so glad you said this.  I've learned a lot from the Internet research I've done.  I'm constantly on the lookout for new studies but careful to check their validity.

Thankfully, I quickly found

Thankfully, I quickly found out, through this site, that many of those studies were old. I think, just the initial shock of the diagnosis and not completely knowing exactly what I'm dealing with (until the pathology report returns) is the most challenging. There are so many different types and grades and stages, that it all becomes pretty overwhelming.  I'm probably going to lay off researching until I know exactly my Type, grade, and stage I have. And, I will be sure to post my findings here, as soon as I get them. I'm sure I will be very confused. But, I know you guys are here to help in any way and I feel so loved and not alone. Thank you, from the bottom of my heart, for being here for me/us.

Charissa

ConnieSW said:

Charissa

Welcome.  You were lucky to find this site so soon after your diagnosis.  Why shouldn't your good luck continue?  We are here for you, pretty much day and night.

Awe, you brought a BIG smile

Awe, you brought a BIG smile to my face. Hoping my favor continues. Feeling blessed! 

Charissa

Soup52 said:

Finding out you have cancer

Finding out you have cancer is a shock and devastating news, but rest assured you have found an awesome group for support and info. I am stage 111c and an aggressive clear cell cancer. I have had robotic surgery, 5 weeks of radiation external and 3 internal, brachytherapy. I have also had 5 chemo with just one carbo taxol to go. I'm alive and kicking. Chemo isn't fun, but you'll find everyone has different affects. For me the week of chemo is usually my worst, but I've never thrown up. They give you anti nausea meds that really help. You will find much info on this site to help you with chemo should you need it. There is a whole thread termed women going through chemo. Also those of us still going through chemo may post there or elsewhere on this board. We will all be with you on your journey!

Thank you, for your empathy

Thank you, for your empathy and understanding. It is VERY shocking and devastating - especially when I have done most everything hoping to avoid ever getting it (healthy foods, cookware, toothpaste, shampoo, soaps, vitamins, supplements, not using the mircowave, etc.).  I will begin reading on chemo, so I am better prepared for what lies ahead. Thank you, for dedicating and taking time to document this for us.

I sincerely appreciate all you for being here for me/us. It brings tears of joy to my eyes, knowing I don't have to go through this alone. As much as my friends and family want/are here for me, they truly do not understand. Well, really who does? Unless you walked in these shoes, it's not something you spend time studying. I am so grateful to all of you. Love and hugs.

Charissa

SandyD said:

Hi Charissa,

Hi Charissa,

It's devastating to get a cancer diagnosis no matter what. Then when you start looking online about your type of cancer and see statistics (even though they're generally old stats and include women with a variety of characteristics such as type or amount of treatment, age, stage, etc.) it's even more terrifying. It's helpful to keep in mind that these stats generally don't represent the specifics of your case. What I've found is more relevant is first finding the best possible medical support team and learning from the collective wisdom of others who have personally dealt with similar conditions such as the women you'll find on this board. For me, the more I read the experiences of other women, including those diagnosed at more advanced stages, the more I felt like this is do-able! It's natural for you to experience fear and of feeling overwhelmed but I hope you'll be comforted in contemplating how many women are making it through treatment and have gotten to the other side and going on to not only surviving it all but having a high quality of life. I myself just learned that I'm in remission after treatment (radical hysterectomy, 6 rounds of chemo with taxol/carboplatin, and internal radiation/brachtherapy). Although I was fortunate to be diagnosed Stage 1A I had 2 forms of highly aggressive grade 3 uterine cancer, both carcinosarcoma and papillary serous.

Sandy

Thank you, Sandy, for all

Thank you, Sandy, for all your words of wisdom. It is so comforting to come here and know everyone understands and sadly remembers all the different stages you go through. All of you are such an inspiration to me. I hope, I too can beat this and be on the other end encouraging the newcomers one day. What  a blessing that would be - paying it forward.

You are absolutely right. The more I read the success stories, the more empowered I feel. And, everyone sharing their exact diagnosis (Type, Grade, and Stage) and treatment is so helpful - even though I don't thoroughly understand it all yet.

I will be sure to share my pathology findings on here, once I receive them. I am supposed to meet with my Oncologist on June 9th. However, the results should be in next week. I'm not sure getting the results are going to change anything, so I will probably wait for my appointment and not ask for them sooner. It's kind of nice believing they got it all - even though that might not be the case.  Is there advantages to getting the results prior to my appointment?  My Oncologist said chemo would start 4 weeks after my hysterectomy. I'm 12 days out from surgery, with 2 weeks and 2 days still to go before the 4 week mark. Does that sound about right to start chemo?

Thank you, so much for your time, encouragement, support, and wisdom. Love and hugs!

Charissa

Editgrl said:

Charissa

I can't add too much to what other ladies have said, but I do want to welcome you to this board.  You will find a lot of information and support, and I honestly don't know how I would have gotten through treatment without these women.  My cancer was also Grade 3 and chemo was always going to be part of my treatment.   

One thing you will hear a lot is, everyone reacts differently.  To chemo, to radiation, recovering from surgery.  There is a very broad spectrum of reactions and recovery and "normal" can cover a lot of ground.  

Since you are already looking at diet, etc. you might want to consider including an integrative oncologist or naturopathic oncologist as part of your medical team.  Some specialize in offering care that's complementary to conventional treatment.  There are several women on this board, myself included, who have done that and found it useful.

Right now is the scariest part, where you're dealing with the initial shock of diagnosis and the unknown to follow.  It will get better. So take a breath, put your energies toward healing from surgery, and then you can see what sort of treatment plan your doctor has in mind.  

Chris

P.S.  love the pic with your horse.  I ride, too!

 

Thank you, Chris, for the

Thank you, Chris, for the encouraging message. I have spent the past day talking with my oncologist's nurse, as well as a holistic doctor in San Francisco. My holistic doctor is not opposed to conventional treatment alongside his treatment (diet, supplements, vitamin C intravenous, and many other tricks up his sleeve). The oncologist's nurse said standard Chemo usually consists of a six cycle treatment, one cycle every 21 days. Again, this is standard, and my situation may be different depending on the pathology results.  But, that would be doable. Again, this is all new to me. I appreciate you guys encouraging me forward, and thoroughly understanding the process - this being the most scariest time.

When I started reading things on-line, I thought my riding days were over. I actually contacted the previous owner, as she has first right of refusal, and informed her of what was taking place.  But, now, after finding this group, I'm thinking I may be able to climb up on my big boy again. He is a gentle Tennessee Walker that loves to explore the trails. I joke around calling him my "Christopher Columbus." Are you back riding yet?  My two teenage daughters enjoy the English world, riding in 3-Day events.  I actually started taking dressage lessons, prior to this diagnosis. That can become very addicting. Lol!

Love and BIG hugs to you!

Charissa

Abbycat2 said:

Charissa, welcome to our board

 

The initial diagnosis followed by a hysterectomy was undoubtedly the worse and most frightening part of my cancer journey.  This is how I coped:

1. I learned as much as I could about my grade 3 (which is always aggressive) adenocarcinoma.  Like many other women here, I received my UPSC diagnoses following the pathology evaluation.  UPSC stands for Uterine Papilliary Serous Carcinoma. Clear Cell is another aggressive type. I gathered all my reports- operative, pathology, Pet and Cat scan reports and obtained two additional opinions.

2.  I educated myself on the standard of care for women diagnosed with stage IIIa UPSC.  The standard of care is established through research results and is what insurance companies will pay for (I am not talking about a clinical trial here).  Most women with a grade 3 cancer receive chemotherapy and possibly radiation treatment.

3. At first, I took a loved one or two with me for support and to be additional ears.  I wrote ALL my questions down in duplicate and gave one copy to my gyn oncologist each visit.

4.  An initial Pet/Cat scan and subsequent Cat scans have revealed no evidence of disease (We refer to that as NED).  I had my surgery over 2.5 years ago and chemo ended in March, 2014.  Have you had a Ca-125 blood test?  This should be done before surgery, during and after treatment.

5.  I continued to work full time throughout the 6 cycles of Carboplatin and Taxol chemo I received. Practically every woman starts off with this combination.  I missed one day of work following my last chemo (#6) because I was tired.  The worse part of the chemo ws the severe and unrelenting lower back pain I experienced due to the Taxol and the neuropathy in my feet.  My feet are still numb, but quite frankly I would do it again.  It wasn't that bad for me but realize everyone is different.  My gyn onc said that 90% of my treatment was the surgery and of the 10% left over, 9% was the chemo.  Radiation would be 1% according to him.

Please come back with questions.  You will be surprised to discover that eventually you will work through the horror of having to face one's mortality with a cancer diagnosis and start to thrive again.  I promise!

Hugs,

Cathy    

Wow! Thank you, Cathy, for

Wow! Thank you, Cathy, for the detailed information. I guess the pathology report will give me the details I am seeking, but not really looking forward to - UNLESS promising news. But, you're right, fear comes from a lack of education. And, as I quickly found out, the correct information can eliminate fear.

It sounds like six cycles is the normal. Yesterday and today, I spent time talking with the nurse that works at the oncologists office, as well as a nurse at a holistic office. It sounds like both doctors want what is best for the patient and are willing to combine treatment and partner for my benefit.

I don't see any lab results on the Sutter Gould site that shows they did the CA-125 test. Does it have a particular name or would it be titled CA-125? I seen this come up on a lot of other sites & seems pretty routine for doctors to do. Again, I can't find one of those among my reports. Hmmm? Should I request one be done? How do these benefit us?

I've also read a lot of posts where many get diabetes and neuropathy in their feet, from the chemo treatment. Is this pretty common for most?  I wonder what the percentage is for acquiring these after treatment?

Again, thank you, for your warm welcome and the details you provided. This group is so comforting and helpful. I feel extremely blessed!  And, today is my 12th day after DaVinci surgery and I am so elated - I have not taken any pain meds today. I did get EXTREMELY tired and had to take a nap - a first since the surgery. I think I'm just a little more in tune with my body off the meds. I should be driving by next week and have a couple weeks of normalcy, prior to chemo starting. I will update all of you, as soon as I get my results back.

Love and hugs!

P.S. Thank you, for remaining committed to this group and assuring us there is hope. I think it would be all too easy for many to want to put this behind them and move forward.  BUT, we need you guys. If treatment is effective for me, I think I need to remain committed to encouraging others forward too. You guys are a true blessing to all us in this new camp. Thank you, thank you, thank you!

ConnieSW

Hair

i didn't shave my head because I was getting a wig and the fitter recommended not too.  I think most people cut their hair short first (mine already was).  I could tell mine was getting ready to go a few days before because it just looked lank and lifeless.  Is yours long enough to donate?  Might make you feel a bit better.

Soup52

Hair

My hair was medium length and started coming out shortly before my second chemo. I shopped for a wig before it came out. I opted to order from a spa in my town that offered styles that were more like my own, med length, no bangs, and pretty well matched my own hair color. I also went to American cancer where free wigs were offered, but none of theirs matched my style. By the way my hair didn't really come out in clumps but some overall. I had the rest shaved off at the spa where I bought my wig. Losing hair is difficult, but I soon learned how much quicker I was able to get ready when showering.