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Another Newbie

LindyLu
Posts: 72
Joined: Sep 2016

Hello Dear Women!  I've been lurking around this site for about three weeks now, gaining information, inspiration, and secret support from all of you.  It took me that long to get my nerve up to join and chat.  I am 65, diagnosed stage II endometrial cancer, then upgraded to stage IIIC1 after lab results from my total hysterectomy/lymph node extraction done on August 23rd.  I recently had my post-op.  Even though my PET scan came back clear, my oncologist is recommending sandwich treatments of chemo (21 day cycle) followed by 5 weeks radiation (possible both types), then three more rounds of chemo.  I see others here have had this same scenario.  I absolutely love my oncologist and have decided to go ahead with his recommendations.  My hubby is wonderful and backs me 100%  It's been quite the ride since I was diagnosed in late July!

You ladies are amazing and I look forward to getting to know each of you a little better.  My wish is that your strength to fight and keep fighting this cancer battle will rub off on me!  Strength in numbers...

Thanks again for being so open in sharing your personal stories.

Blessings, LindyLu

ConnieSW's picture
ConnieSW
Posts: 1193
Joined: Jun 2012

As we always say, we are pleased to meet you but regret the circumstances.  its great you found us so early.  I was already midway through chemo before I found this site.  So, keep coming.  We are here to help and be helped.

NoTimeForCancer's picture
NoTimeForCancer
Posts: 1902
Joined: Mar 2013

Welcome LindyLu.  You are going to be able to do this.  There is a wealth of information on these pages and, like Connie, I found this after I had already been in treatment.  

giggs100's picture
giggs100
Posts: 91
Joined: Oct 2015

I am so happy you found this group.   You have here a library of information first hand that the women are so willing to give plus their complete support.  I have just started my external radiation and after that will enter my second round of chemo treatments.   Sometimes we have to keep fighting to get ahead of this beast. 

Jerri

LindyLu
Posts: 72
Joined: Sep 2016

ConnieSW, NoTimeForCancer, and giggs100, thank you so much for the warm welcome and kind words.  There's so much more I would like to know about this journey forward.  It's so wonderful to know that there are women who are willing to share information, who really understand what it's like to experience what I'm about to go through.  Thanks for being here!

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1301
Joined: Jun 2015

Welcome LindyLu. Just wanted to say that I'm glad you found us as well. You will be amazed at how fast all of this goes and how strong you are as you go through it. There is nothing off limits to ask here. Someone most likely has been there, done that!  Take it one step at a time and know that we are all here to help when you need it.  I was lucky to find the wonderful ladies here before I started treatments. The knowledge, love and willingness to share was priceless for my journey. I'll always be grateful.

Love and Hugs,

Cindi

Lou Ann M's picture
Lou Ann M
Posts: 983
Joined: Feb 2015

Welcome to the club no one wants to Be a part of.  I am glad you found this place.  There are a great bunch of ladies here to help you out.  The information and encouragement is priceless.  Ask all the question that you want, someone will probably have an answer for you. Nothing is off limits.  If you read through some of the older posts you will see that some very interesting topics have been discussed.  I wish I had found this place at the beginning of my journey.  It would have been easier.  It would have made it easier to have someone to talk to that understood what I was going through.

Hugs and prayers, Lou Ann

beccabtown's picture
beccabtown
Posts: 234
Joined: May 2016

Thank you for joining this board, although I'm sorry you had reason to. Your attitude is very inspiring.

I've been here since May. I have a similar diagnosis to yours (IIIc2, grade 3, serous/endometriod mix). I'm almost halfway through the sandwich regimen. In my second week of external radiation. So far (knock on wood) that has not been bad.

Editgrl's picture
Editgrl
Posts: 901
Joined: Jun 2015

I'm glad that you finally got up the nerve to join us.  You'll find a ton of support and information here.  There is absolutely no subsitute for being able to talk with others who are going through exactly what you are going through.  The fact that you found us early on will stand you in good stead.  Don't get too far ahead of yourself and take it one step at a time.  You'll be amazed how far you can go that way.

Chris

EZLiving66's picture
EZLiving66
Posts: 1039
Joined: Oct 2015

Hi LindyLu!  I really want to welcome you to the group.  This is such a good group of ladies who are a wealth of information.  You have your very own cheerleaders when you're here. *~8~*

Love,

Eldri

janaes
Posts: 503
Joined: May 2016

Hi lindilu, welcome to our wonderful group that has lots of support and answers.  Having cancer is not fun but this group sure helps along the way.

Janae

LindyLu
Posts: 72
Joined: Sep 2016

Wow, thank you all for greeting me with open arms!  I can feel the concern and encouragement through your collective voices.  I hardly ever had a cold, so this was a total shock to my psyche.  Love and gratitude to all of you for your generous support and guidance!

 

Soup52's picture
Soup52
Posts: 660
Joined: Jan 2016

Welcome Lindylou! This is a great place for support and info! Sorry you had to join the group, but glad you found us:)

DSNYC's picture
DSNYC
Posts: 20
Joined: Sep 2016

Hello LindyLU....Im right there with you. Im 44 and had a total hysterctomy 3 weeks ago, it was originally 1B grade 2, but after patholgoy report came back, Im now at stage 3C because of positive lymph nodes, as you are. My oncologist is making me meet with radiation specilaist and then medical (chemo) specialist so the 3 of them can line out a cohesive treatment plan. Did your surgical oncologist recommend the treatment for you on his own without the specialists?

SO far Ive met with the radiation specilast who recommended 28 days, everyday M-F, with light dose of chemo during the same time to prep my body followed by 3 or 4 rounds of strong chemo (this is where the hair loss happens) but not prior. I meet with the medical (chemo) specialst next week, but Im surprised you start with chemo, then radiation, then back to chemo....were your lymph nodes positive somewhere else in your body, like upper body or outside the pelvic, lower abdominal area? Im not trying to debate your doctors recommendation, but I want you to be fully informed from/by each specialsit and have them cohesively decide on your treatment plan.

It stinks any which way and we are all here for you on this journey. Everyone here is ttruly amazing and has so much support, info and expericance to offer.

Diana

NoTimeForCancer's picture
NoTimeForCancer
Posts: 1902
Joined: Mar 2013

Diana, there are lot of women here who have had the chemo/radiation/chemo plan.  It is referred to as the "sandwich" treatment.  It is interesting to hear that others have had their radiation at the end, but I think it is they are still trying to figure out the best course of treatment for women with gyn cancers.  For me it is interesting to hear "light dose of chemo", I have heard of "dense dose" but this is a new term for me.  I am done with my treatment but always interested in learning more.  

I am also so interested when I read about how often women have CT scans, what their follow ups consist of, etc...I know I make my onc crazy when I say what I read on the internet - HOWEVER I was preface it with it is from things I have read in a chat room with women who also have a gyn cancer.  Fortunately, she understands and is always very patient to answer all my questions.  I love having discussions with her.  I want the docs to read the medical journals and patients to educate them on the women who are fighting the disease.

I have read some of the other posts here and would agree that everyone is different and everyone has to make a decision on what treatment is best for them.  

rcdeman
Posts: 214
Joined: Aug 2016

Hi LindaLu, I'm sorry you had reason to join us, but welcome nonetheless.

My mom is in a similar situation as you. Like you, she is 65 but was diagnosed with Uterine Papillary Serous Carcinoma Stage IIIC1, Grade 3 just recently. We are not sure which chemo treatment option she is getting yet, but it's probably the default 6 rounds of carbo/taxol followed by some kind of radiation treatment. We're going to discuss her treatment this Friday.

Was there a reason why the doctor decided to give you the chemo sandwich treatment? What was his reasoning? We are exploring our options and am not sure which way has been proved to be more effective in treating various types of uterine or endometrial cancer.

My prayers are with you. My mom will probably be doing chemo during the time you are going through it also. It would be nice to update each other on the progress.

Love,
Rebecca

LindyLu
Posts: 72
Joined: Sep 2016

Thank you for your kind words, DSNYC and rcdeman.  As you've heard before from reading other discussions, cancer is very individualized, different for everyone, and so are the treatment options.  What works for me and my choice, may not be the best option for you.

In my case the gynecologic oncologist who did my surgery is a two hour drive away and part of an oncology treatment group in his area.  It is worth the travel time because he is the best and most caring doc I've ever met.  He is the team leader for my treatment plans.  His view is that, in my case, chemo meds would be more effective before any radiation treatments, followed by more chemo in case of lingering cells.  Also, he wants to closely monitor my chemo treatments (one every 21 days).  My husband will drive me the two hours back and forth.  A radiation treatment center (also part of his oncological group) is within 15 minutes of my home so I won't have to travel far for those daily doses.  My doc will still oversee my radiation treatments, working with the radiation oncologist in my area.

On Monday I have a pre-chemo educational session where I will find out more details.  An exchange of information will take place at that time.  Hopefully I will also get a time-line as to when treatments will start.

I don't know if this was helpful to you, but it's always best to do your own research and decide on a plan of action that you are most comfortable with.  

Hugs to you and know there's someone walking right with you on this crazy journey!   Cheers,  LindyLu

beccabtown's picture
beccabtown
Posts: 234
Joined: May 2016

One of my doctors explained that the preference for doing the sandwich regimen vs. all chemo and then radiation is partly a matter of the doctor's background. Surgeons and radiologists are concerned about zapping the areas where recurrence is most likely (and opt for the sandwich approach) and medical oncologists are thinking about treating the full system to reduce the chance of metastasis (and are focused on completing the chemo). He claimed there is no solid evidence that one approach or the other is more likely to be effective. There are probably many considerations that point to one or the other for individual patients. In my case, I think it was the aggressiveness of the kind of cancer I have and the extent of lymph node involvement (but no sign of spread outside the pelvis) that tipped the balance for sandwich treatment.

rcdeman
Posts: 214
Joined: Aug 2016

Thanks for answering my question, Becca. Either way, I will ask the medical oncologist this Friday these questions and will see what option would be best for my mom's current diagnosis.

Love,
Rebecca

brissance's picture
brissance
Posts: 192
Joined: May 2016

Well you have met some mighty fine and very smart ladies.  They all amaze me.  They have made my trek much easier.  I echo that I am sorry you have to be here but welcome you.  

 

LindyLu
Posts: 72
Joined: Sep 2016

Thanks for the welcome.  This site is amazing and I've already learned so much!  Women here are THE BEST!  I'm so glad you are all here and so willing to share your journey.   It helps so much in facing and fighting this beast.   ~LL

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Hi LindyLu, sorry for the delayed welcome. I've been traveling for work and haven't had access to a computer for a few days. I second everyone's sentiments. This support group has been a real help for me and hopefully it will be the same for you. No questions are off limits. We have experienced it all.

It sounds like you have a wonderful medical team and a very supportive husband on your side - good for you! Hopefully your treatment will be drama-free and you will look back at this time as a very small chapter of a wonderful life.

As the others have said, try to stay positive and never, ever give up - even when the going gets tough. We are here for you!

Wishing you strength and hope, Kim

 

LindyLu
Posts: 72
Joined: Sep 2016

Thanks again, everyone, for being so welcoming and supportive.  This site is a Godsend.  You Ladies are THE BEST!

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