New to this Camp

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 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.

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 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.

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 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.

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 to my face. Hoping my favor continues. Feeling blessed! 

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 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!

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 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!