Just diagnosed and looking for a support group

lovemysaints · July 2011

I was diagnosed with stage 1 uterine cancer two weeks ago. My first appt. with the oncologist is in two days so I don't have the report of my CT scan or the treatment he plans. Up to this point, I have researched to understand what stage 1 is and the treatment options generally used. I have created two journals, one for doctor visits and one for reflection and noting changes (diet, fatigue, etc.) I have made a list of questions (there are so many) as well. I have also tried to decrease stress around me. I am fortunate that as a teacher, I have the summer off which has helped. Overall, my attitude is fairly positive and I pray for strength, courage, and faith. One thing I have noticed is that once others know I have cancer, they change somehow towards me. It is as if they think I am so fragile. They treat me differently, not badly, just differently. It is hard to talk about the cancer or anything it seems. They either think I am this totally strong person who can handle anything or they treat me with kid gloves. I really need to just be able to talk with someone who can relate. My husband, bless his heart, tries so hard, but it seems like he is so angry at fate. He tries not to show it, but I can tell.

norma2 · July 2011

HI!
Welcome to the group. You can read about me in my profile so I won't go there with the boring details about me.

I think you will find comfort and strength at this site. The ladies here are a lovely and varied group. When I have had a crisis they kept me going with their support.

For me the whole cancer has been one where I have come to value each day as a precious gift. When I wake in the morning I think "Thank you, God, for another day." There are times when I am afraid and times when I have courage. I pray a lot.

I see in your name lovemysaints that you might be a football fan. I was having chemo and had just about lost all my hair Superbowl Sunday when the Saints won. Had hubby shave the rest of it off that day. It is a good memory. I am from New Orleans and have waited countless years for them to win.

Being alone in this journey is tough. I am glad I found this site where people are going through the same kinds of things. It helps to know I am not alone.

Best to you, Norma

lovemysaints · July 2011

norma2 said:
HI!
Welcome to the group. You can read about me in my profile so I won't go there with the boring details about me.

I think you will find comfort and strength at this site. The ladies here are a lovely and varied group. When I have had a crisis they kept me going with their support.

For me the whole cancer has been one where I have come to value each day as a precious gift. When I wake in the morning I think "Thank you, God, for another day." There are times when I am afraid and times when I have courage. I pray a lot.

I see in your name lovemysaints that you might be a football fan. I was having chemo and had just about lost all my hair Superbowl Sunday when the Saints won. Had hubby shave the rest of it off that day. It is a good memory. I am from New Orleans and have waited countless years for them to win.

Being alone in this journey is tough. I am glad I found this site where people are going through the same kinds of things. It helps to know I am not alone.

Best to you, Norma

Hi Norma
Thanks for the kind words and encouragement. Actually, the saints I refer to are Saint Bernards. My husband and I breed, raise and show them. I just posted a picture of me with them. They are so affectionate and know just when I need a "dog hug".

I too thank God for each day and all the blessing in my life. Sounds ironic after receiving my diagnosis, but I really do have so much to be thankful for.

I see the oncologist for the first time tomorrow--a little nervous, but trying to empower myself. I think my husband is actually taking my diagnosis harder than I am (other than initially.)

I just completed my profile, not much to list at this point with regards to treatments, etc. I'm a newbie here, but am trying to navigate the site. I know the more I reach out, the more comfort & strength I will receive and be able to give back.

Thanks again for your post--it means a lot.

Brook

Fayard · July 2011

lovemysaints said:
Hi Norma
Thanks for the kind words and encouragement. Actually, the saints I refer to are Saint Bernards. My husband and I breed, raise and show them. I just posted a picture of me with them. They are so affectionate and know just when I need a "dog hug".

I too thank God for each day and all the blessing in my life. Sounds ironic after receiving my diagnosis, but I really do have so much to be thankful for.

I see the oncologist for the first time tomorrow--a little nervous, but trying to empower myself. I think my husband is actually taking my diagnosis harder than I am (other than initially.)

I just completed my profile, not much to list at this point with regards to treatments, etc. I'm a newbie here, but am trying to navigate the site. I know the more I reach out, the more comfort & strength I will receive and be able to give back.

Thanks again for your post--it means a lot.

Brook

Hola Brook
I am also fortunate to be a teacher. I was diagnosed last November, stage 2 grade 3. I had a hysterectomy, and now I am just about to finish 5 cycles of chemo. You are lucky to has found your cancer at stage 1.

Please keep us posted about your doctor's appointment,

Rewriter · July 2011

Welcome, Brook
First, can I assume that you have had your hysterectomy and that the Stage 1 diagnosis was made after the related tissue and lymph node samples, pelvic washings, etc.? If so, then you should have information on your pathology report about the type of endometrial cancer you have (e.g., endometrioid adenocarcinoma (Type I)--the most common type; uterine papillary serous carcinoma (UPSC); clear cell; or uterine sarcoma). This report also indicates how far the cancer has penetrated/spread and is grouped accordingly into stages a, b, or c.

In addition to the stage, the pathology report states the cancer's grade--1, 2, or 3. The grade relates to the appearance of the cancer cells, with those that look most like normal cells offering the best prognosis.

Stage and grade will give you more information about prognosis and treatment options. My understanding, and I am NOT an expert, is that Stage 1 endometrioid adenocarcinoma is associated with a very positive prognosis and very often requires no treatment beyond a total hysterectomy.

I hope that your oncologist appointment reassures you. Know that whatever your treatment might be, you can come here to vent. We are here for you.

Jill

lovemysaints · July 2011

Fayard said:
Hola Brook
I am also fortunate to be a teacher. I was diagnosed last November, stage 2 grade 3. I had a hysterectomy, and now I am just about to finish 5 cycles of chemo. You are lucky to has found your cancer at stage 1.

Please keep us posted about your doctor's appointment,

Hola!
I do feel very lucky to have found the cancer so early. This gives me a very positive outlook for recovery. I will definitely stay posted on my doctor's appt. Thanks so much for the response. I really appreciate the support.

Brook
P.S. Nice to hear from another teacher. I teach high school. You?

lovemysaints · July 2011

norma2 said:
HI!
Welcome to the group. You can read about me in my profile so I won't go there with the boring details about me.

I think you will find comfort and strength at this site. The ladies here are a lovely and varied group. When I have had a crisis they kept me going with their support.

For me the whole cancer has been one where I have come to value each day as a precious gift. When I wake in the morning I think "Thank you, God, for another day." There are times when I am afraid and times when I have courage. I pray a lot.

I see in your name lovemysaints that you might be a football fan. I was having chemo and had just about lost all my hair Superbowl Sunday when the Saints won. Had hubby shave the rest of it off that day. It is a good memory. I am from New Orleans and have waited countless years for them to win.

Being alone in this journey is tough. I am glad I found this site where people are going through the same kinds of things. It helps to know I am not alone.

Best to you, Norma

Hi again
Read your profile. I am originally from Houston and my first husband (who unfortunately passed from cancer) was treated at M.D. Anderson.

Brook

lovemysaints · July 2011

Rewriter said:
Welcome, Brook
First, can I assume that you have had your hysterectomy and that the Stage 1 diagnosis was made after the related tissue and lymph node samples, pelvic washings, etc.? If so, then you should have information on your pathology report about the type of endometrial cancer you have (e.g., endometrioid adenocarcinoma (Type I)--the most common type; uterine papillary serous carcinoma (UPSC); clear cell; or uterine sarcoma). This report also indicates how far the cancer has penetrated/spread and is grouped accordingly into stages a, b, or c.

In addition to the stage, the pathology report states the cancer's grade--1, 2, or 3. The grade relates to the appearance of the cancer cells, with those that look most like normal cells offering the best prognosis.

Stage and grade will give you more information about prognosis and treatment options. My understanding, and I am NOT an expert, is that Stage 1 endometrioid adenocarcinoma is associated with a very positive prognosis and very often requires no treatment beyond a total hysterectomy.

I hope that your oncologist appointment reassures you. Know that whatever your treatment might be, you can come here to vent. We are here for you.

Jill

Hi Jill
No, I haven't yet had my hysterectomy or any other treatment/surgery. A couple of weeks ago I just started bleeding and knew something was wrong. Fortunately, I was able to get into the GYN's office and they performed a biopsy on the spot along with bloodwork and internal/external sonogram. I had the preliminary sonogram report before I left the doctor's office! Anyway, I have a 8cm tumor. I received the biopsy report 6 days later and was diagnosed. I had the CT scan last Tuesday and will see the oncologist for the 1st time tomorrow. I have done research as to stage 1a, 1b, & 1c to help me understand what that means. I don't know where to go from there until I get specific info from the oncologist.

Thanks so much for the info on understanding the grade. I take it that grade 1 is better??? I also researched general treatments used in stage 1, again, just for some background so I can understand the doctor when I see him. I will keep posted on what is determined. I am sure that I will have tons of questions.

Thanks sooooo much for being there and taking the time to respond to me. It really means a lot to know that there are others I can reach out to that understand.

Brook
P.S. Love the pic. My husband & I have saint bernards (10 at the moment) which we show and a Boston Terrier who is my little princess. Of course she thinks she's a saint!

Rewriter · July 2011

lovemysaints said:
Hi Jill
No, I haven't yet had my hysterectomy or any other treatment/surgery. A couple of weeks ago I just started bleeding and knew something was wrong. Fortunately, I was able to get into the GYN's office and they performed a biopsy on the spot along with bloodwork and internal/external sonogram. I had the preliminary sonogram report before I left the doctor's office! Anyway, I have a 8cm tumor. I received the biopsy report 6 days later and was diagnosed. I had the CT scan last Tuesday and will see the oncologist for the 1st time tomorrow. I have done research as to stage 1a, 1b, & 1c to help me understand what that means. I don't know where to go from there until I get specific info from the oncologist.

Thanks so much for the info on understanding the grade. I take it that grade 1 is better??? I also researched general treatments used in stage 1, again, just for some background so I can understand the doctor when I see him. I will keep posted on what is determined. I am sure that I will have tons of questions.

Thanks sooooo much for being there and taking the time to respond to me. It really means a lot to know that there are others I can reach out to that understand.

Brook
P.S. Love the pic. My husband & I have saint bernards (10 at the moment) which we show and a Boston Terrier who is my little princess. Of course she thinks she's a saint!

Profile Pics
Brook, I love YOUR pic. Most animal lovers are ok in my book. Because I live in NYC, I have only one pooch--an eight-year-old tweenie (in between mini and standard) dachshund named Trixie Delight. If I had the space, my home would be filled with dogs.

When I was going through treatment, Trixie was by my side all the time. I lived with a friend until I was back on my feet, and the friend was wonderful. However, Trixie could practically read my mind and would come over for a cuddle whenever I was feeling scared.

Here's to our canine companions!

Jill

P.S. Trixie is stuck on her name and thinks everything she does is "Delight"ful. She's a spoiled little thing.

Kaleena · July 2011

Rewriter said:
Profile Pics
Brook, I love YOUR pic. Most animal lovers are ok in my book. Because I live in NYC, I have only one pooch--an eight-year-old tweenie (in between mini and standard) dachshund named Trixie Delight. If I had the space, my home would be filled with dogs.

When I was going through treatment, Trixie was by my side all the time. I lived with a friend until I was back on my feet, and the friend was wonderful. However, Trixie could practically read my mind and would come over for a cuddle whenever I was feeling scared.

Here's to our canine companions!

Jill

P.S. Trixie is stuck on her name and thinks everything she does is "Delight"ful. She's a spoiled little thing.

Trixie!
Jill:

Love your dog.

Kaleena · July 2011

lovemysaints said:
Hi Jill
No, I haven't yet had my hysterectomy or any other treatment/surgery. A couple of weeks ago I just started bleeding and knew something was wrong. Fortunately, I was able to get into the GYN's office and they performed a biopsy on the spot along with bloodwork and internal/external sonogram. I had the preliminary sonogram report before I left the doctor's office! Anyway, I have a 8cm tumor. I received the biopsy report 6 days later and was diagnosed. I had the CT scan last Tuesday and will see the oncologist for the 1st time tomorrow. I have done research as to stage 1a, 1b, & 1c to help me understand what that means. I don't know where to go from there until I get specific info from the oncologist.

Thanks so much for the info on understanding the grade. I take it that grade 1 is better??? I also researched general treatments used in stage 1, again, just for some background so I can understand the doctor when I see him. I will keep posted on what is determined. I am sure that I will have tons of questions.

Thanks sooooo much for being there and taking the time to respond to me. It really means a lot to know that there are others I can reach out to that understand.

Brook
P.S. Love the pic. My husband & I have saint bernards (10 at the moment) which we show and a Boston Terrier who is my little princess. Of course she thinks she's a saint!

Welcome
Brook:

Welcome to the site. So sorry you have to be here though! Don't dwell on all the stages, etc. until you actually have your surgery. I had a positive biopsy for a tumor and when it was removed, it was negative. Also, please try not to read random stuff on the internet. It is old and outdated and will give you bad information. Look on this site for the places that are up to date with information.

Also, for your information, a lot of times the treatment is the same whether it is grade/stage 1 or higher. There is a standard that they do. With me, they didn't find my cancer until after my hysterectomy. So I had to have another surgery just for staging (they didn't find anything else and my washings and lymphs were negative), I was diagnosed with Grade 2, Stage ii/iiia. Was ordered Taxol/Carb treatment spread over six months.

Anyway. Hope all goes well for you. Love the pups!

Kathy

Rewriter · July 2011

Kaleena said:
Trixie!
Jill:

Love your dog.

Thanks; I am crazy about her, too. How are you doing, by the way? Have your insurance issues resolved themselves? Are you all moved in?

Kaleena · July 2011

Rewriter said:
Thanks; I am crazy about her, too. How are you doing, by the way? Have your insurance issues resolved themselves? Are you all moved in?

Still working on the
Still working on the insurance. I am, however, getting that port takin out on Thursday at a local hospital (one of the ones that wouldn't flush it). I was getting too stressed so I decided to lay back for a bit before going back at them.

We moved into our home. and this weekend we finally have our office moved too. Now I am finally relaxing. Although this weekend it was sad because we lost our family pet cat who we had for 19 years. He was a good old cat.

We are planning a short vacation. Long trip, but short. Going to Mrytle Beach for 4 days. Looking forward to that! We only have one week we can do it before all the stuff starts back up (college, band camp, etc.). It can be tiring but I do love it.

How about you? Hows everything going? Still want to get to NY too. Maybe hubby and I can get away for a weekend.

Thanks for asking, Jill.

Kathy

Rewriter · July 2011

Kaleena said:
Still working on the
Still working on the insurance. I am, however, getting that port takin out on Thursday at a local hospital (one of the ones that wouldn't flush it). I was getting too stressed so I decided to lay back for a bit before going back at them.

We moved into our home. and this weekend we finally have our office moved too. Now I am finally relaxing. Although this weekend it was sad because we lost our family pet cat who we had for 19 years. He was a good old cat.

We are planning a short vacation. Long trip, but short. Going to Mrytle Beach for 4 days. Looking forward to that! We only have one week we can do it before all the stuff starts back up (college, band camp, etc.). It can be tiring but I do love it.

How about you? Hows everything going? Still want to get to NY too. Maybe hubby and I can get away for a weekend.

Thanks for asking, Jill.

Kathy

Glad you are finally relaxing
although I am very, very sorry about your cat. For many of us, our canine and feline companions are family members, too; and I feel the same way about Trixie as I would about a child (you have to be an animal lover, I suppose, to understand how I feel). So, I send my condolences.

I've never been to Myrtle Beach, but my parents used to go there all of the time to play golf. From the pictures they would take, it looked lovely. I assume that your whole family will be going.

I'm glad to hear that you are getting your port removed; that's one fewer reminder of your treatments.

Be well, and let us know how everything goes on Thursday.

All the best,

Jill

Double Whammy · July 2011

Kaleena said:
Welcome
Brook:

Welcome to the site. So sorry you have to be here though! Don't dwell on all the stages, etc. until you actually have your surgery. I had a positive biopsy for a tumor and when it was removed, it was negative. Also, please try not to read random stuff on the internet. It is old and outdated and will give you bad information. Look on this site for the places that are up to date with information.

Also, for your information, a lot of times the treatment is the same whether it is grade/stage 1 or higher. There is a standard that they do. With me, they didn't find my cancer until after my hysterectomy. So I had to have another surgery just for staging (they didn't find anything else and my washings and lymphs were negative), I was diagnosed with Grade 2, Stage ii/iiia. Was ordered Taxol/Carb treatment spread over six months.

Anyway. Hope all goes well for you. Love the pups!

Kathy

Welcome Brook
I assume you have had your appointment now and that it was with a gynecologic oncologist. I hope you have a plan of attack in place now and can move forward. A cancer diagnosis sucks no matter what stage and grade.

Welcome to this group. You will find valuable support and information here. Keep us posted on your journey. There's always someone who will have an answer for you.

Suzanne

lovemysaints · July 2011

Kaleena said:
Welcome
Brook:

Welcome to the site. So sorry you have to be here though! Don't dwell on all the stages, etc. until you actually have your surgery. I had a positive biopsy for a tumor and when it was removed, it was negative. Also, please try not to read random stuff on the internet. It is old and outdated and will give you bad information. Look on this site for the places that are up to date with information.

Also, for your information, a lot of times the treatment is the same whether it is grade/stage 1 or higher. There is a standard that they do. With me, they didn't find my cancer until after my hysterectomy. So I had to have another surgery just for staging (they didn't find anything else and my washings and lymphs were negative), I was diagnosed with Grade 2, Stage ii/iiia. Was ordered Taxol/Carb treatment spread over six months.

Anyway. Hope all goes well for you. Love the pups!

Kathy

Hi Kathy--thanks
So far I have only gone to sites like cancer.gov and this one. I don't really understand all the terminology at this point so I focused on the basics to discuss with my oncologist. I see him for the 1st time tomorrow and although I feel positive, I'm a bit antsy and can't sleep. Any other time I am so tire. I did get advice from a post here on this site to reduce sugar and caffeine. That's a tough one, but I am giving it a go. Hubby and I went to market and came back with all kinds of fruits, veggies, yogurt, juice, etc. If nothing else, maybe I'll lose a few unwanted pounds.

I'm getting a bit aprehensive as I have had a 3 week trip to Texas planned for months now and have really been looking forward to it. I am going to visit my son, his wife & kids(they had twins now 2 yrs. old) along with my parents, brothers, sisters, etc--the whole crew. I really don't want to tell them the news over the phone (I live in NY)and I think the trip will be wonderful for me overall. Hopefully, surgery/treatment can be worked around this. It that's not a good idea then I have to reschedule. They will know something big came up for me to do that. My family is so important to me--especially now.

As for our saints, they are indeed a god-send, my Boston Terrier too. Like Jill's dog Trixie, they known your every emotion try to take any pain, sadness away. Both Hubby & I enjoyed sitting under the apple tree on a swing and tossing them a ball; watching them play, swim, then lounge around. They love it when we just hang out with them. Best medicine ever! We also have a 5-1/2 week old saint puppy (single litter) and he is now able to go out in the big yard to meet his family. All our girls treat him as if he belongs to them. They are quite a family. Like Jill said---you have to be an animal lover to truly understand the bond. Speaking of which, I'm sorry to hear you lost your longtime cat. My thoughts are with you.

Thanks for the advice and listening to be vent my thoughts. I means so much.
Brook

Northwoodsgirl · July 2011

Welcome lovemysaints
Glad you found our site early in your fight against cancer. I am sorry you got the disease of uterine cancer. I am hopeful that you will overcome the disease as many of us have or atleast an ability to live with cancer as a chronic condition.
This is a wonderful place to communicate with others about treatment plans, options, experiences and the ups and downs of life after diagnosis and treatment.
As a dog lover you and I are kindred spirits and of course both having had uterine cancer too. So keep us posted on your gyn/onc surgeon appointment.
Likely you will feel better once you know what the plan is and know timelines.
You can enter search terms in the box at the top of this site to see strings of postings regarding common chemotherapy, radiation therapy, brachytherapy, diet, nutrition, insurance, fatigue, side effects of chemo and radiation etc.
Anyway know that I and many others on this site will pray for you and be thinking of you as you go through your fight against cancer.
Oh yes and as far as your friends treating you different it is often because they a afraid for you and know that they too at some point in their lifetime will likely be touched by cancer or maybe they have been already.
You are different is some ways once you have cancer and fought the battle and learned to live moment to moment taking nothing for granted....and many of the ways you will be different are a blessing and gift believe it or not!!!! ((HUG))
Lori

lovemysaints · July 2011

Double Whammy said:
Welcome Brook
I assume you have had your appointment now and that it was with a gynecologic oncologist. I hope you have a plan of attack in place now and can move forward. A cancer diagnosis sucks no matter what stage and grade.

Welcome to this group. You will find valuable support and information here. Keep us posted on your journey. There's always someone who will have an answer for you.

Suzanne

Hi Suzanne
I see the oncologist tomorrow for the 1st time and will discuss my options then. There's so much to take in. Since I am a teacher, I am organizing materials as if I were taking a class--goes with the trade I guess. You girls and this site are giving me a human factor that I so desparately needed. All of you have made me feel that you truly care how things are going with my cancer and my life in general. I am so lucky to have found such knowledgeable, caring women--Thanks to all.

lovemysaints · July 2011

Northwoodsgirl said:
Welcome lovemysaints
Glad you found our site early in your fight against cancer. I am sorry you got the disease of uterine cancer. I am hopeful that you will overcome the disease as many of us have or atleast an ability to live with cancer as a chronic condition.
This is a wonderful place to communicate with others about treatment plans, options, experiences and the ups and downs of life after diagnosis and treatment.
As a dog lover you and I are kindred spirits and of course both having had uterine cancer too. So keep us posted on your gyn/onc surgeon appointment.
Likely you will feel better once you know what the plan is and know timelines.
You can enter search terms in the box at the top of this site to see strings of postings regarding common chemotherapy, radiation therapy, brachytherapy, diet, nutrition, insurance, fatigue, side effects of chemo and radiation etc.
Anyway know that I and many others on this site will pray for you and be thinking of you as you go through your fight against cancer.
Oh yes and as far as your friends treating you different it is often because they a afraid for you and know that they too at some point in their lifetime will likely be touched by cancer or maybe they have been already.
You are different is some ways once you have cancer and fought the battle and learned to live moment to moment taking nothing for granted....and many of the ways you will be different are a blessing and gift believe it or not!!!! ((HUG))
Lori

Thanks Lori
It's nice to know that someone else can understand how I feel treated differently now that I have been diagnosed. Cancer is a scary word and so many of people aren't prepared to hear it. My grandmother used to say that God never gives you more than you can handle and when he shuts a door somewhere he opens a window. My experiences may be able to help others, I may quit sweating the small stuff and make a difference in someone's life. I will strive to find those blessing and gifts. Thanks for the insight.

You are an animal lover too. What do you have?
Brook

Just diagnosed and looking for a support group

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