lost

bob13440

It happened to Me said:

My diagnosis was different too.

My ob/gyn said they thought it was caught early only to find out that it was UPSC (like Ro) and after surgery, we found out it had spread.  I was Staged at IIIa.  I had no lymph node involvement and so far, no recurrences.

I would encourage you and your wife to have a mindset of "I will wake up from surgery".  My surgery took 5 hours.  My doctor said that he would open me up if he thought that he couldn't see everything.  As it turns out, the robot found a pea sized tumor on the back of my pelvis, it wouldn't of been seen with the naked eye.  Most surgeries I've heard of, haven't had any complications. 

I would ask the doctor before surgery what kind of surgery will be done.  Will it be da vinci robotic assisted or will you be opened up?  Ask if there will be morcellation done.  Don't let them do the morcellation.  That has been controversial and it involves chopping up the uterus into tiny pieces and possibly allowing the cancer to spread.   Not to scare you, just to advise you.  

Is Lorraine in good health?

 

Yes

until now, she's been in vey good health. She used to run a lot and as recent as last year was running a 5K race. This was so unexpected (not to say most are), life was so regular and then,BOOM. Guess we're still in some kind of shock. Thanks for the advice, we will definitley mention the kind of surgery.

Fayard

bob13440 said:

question

my wife us having chemo once a week for 5 months. this seems very agressive. Any thoughts?

Hi

I agree with Ro regarding the kind of chemo your wife will receive before having surgery.

I had stage 2, adenocarcinoma grade 3 (aggressive cancer cell). I had 18 treatments of chemo total in 6 months.

Even though I did not have radiation, this was an aggressive treatment. For the most part, everyone type of cancer cell and stages have different treatments.

I will keep you, wife and family in my prayers. Stay positive and take one day at a time. You have seen for yourself in this board the many wonderful and strong women who had and still are fighting their battles, so your wife can do it too! 

AWK

bob13440 said:

Yes

until now, she's been in vey good health. She used to run a lot and as recent as last year was running a 5K race. This was so unexpected (not to say most are), life was so regular and then,BOOM. Guess we're still in some kind of shock. Thanks for the advice, we will definitley mention the kind of surgery.

Hoping today is better.

My surgical outcome also caught everyone off guard.  The extent of the Mets they found, involvement of the cervix on top of the uterus and right ovary, and the type which was/is UPSC.  My gyno/oncologist spent a fair amount of time with us while I was in the hospital as did the doctor who became my radiation oncologist, my now palliative care physician and my hemo/oncologist.  To this day I am still in treatment, two years later.  I was 50 and very healthy at diagnosis.  But I feel like I am like that toy from the 60s - a Weeble.  I wobble but I don't fall down no matter what the news is.  No matter what.  Just remember to take deep breaths, stay busy and try not to look too far ahead in the future, take things one day, one event at a time.  It really helps.  

Write down your questions for your doctors as they come up.  I have a notebook we call Big Green.  I made it up with a friend in the days leading up to surgery with different sections that I add to to this day; one for my questions, one for medications, one for work and disability, one for doctors etc.  It helped me feel like I had some control and that it wasn't so overwhelming. My husband could grab it and use it if needed etc.  

You guys will get though, the earliest days were the worst.  And I have had some bad news along the way but the unknown in the beginning was stressful.  

Hang tough.  Anne

Abbycat2

AWK said:

Hoping today is better.

My surgical outcome also caught everyone off guard.  The extent of the Mets they found, involvement of the cervix on top of the uterus and right ovary, and the type which was/is UPSC.  My gyno/oncologist spent a fair amount of time with us while I was in the hospital as did the doctor who became my radiation oncologist, my now palliative care physician and my hemo/oncologist.  To this day I am still in treatment, two years later.  I was 50 and very healthy at diagnosis.  But I feel like I am like that toy from the 60s - a Weeble.  I wobble but I don't fall down no matter what the news is.  No matter what.  Just remember to take deep breaths, stay busy and try not to look too far ahead in the future, take things one day, one event at a time.  It really helps.  

Write down your questions for your doctors as they come up.  I have a notebook we call Big Green.  I made it up with a friend in the days leading up to surgery with different sections that I add to to this day; one for my questions, one for medications, one for work and disability, one for doctors etc.  It helped me feel like I had some control and that it wasn't so overwhelming. My husband could grab it and use it if needed etc.  

You guys will get though, the earliest days were the worst.  And I have had some bad news along the way but the unknown in the beginning was stressful.  

Hang tough.  Anne

Bob, I hope today is a better day

Ro mentioned that most of us got a worse diagnosis following our surgery based on the pathology report.  My uterine biopsy indicated that I had a papillary type cancer, grade  2. Well , I found out that I had papillary serous carcinoma which is always a grade 3- the most aggressive.  I also found out that it was metastatic as it had spread to my left ovary and to the outside of the ovary. I had a positive wash.  I don 't know if my cancer will return or not and I have no control over it . In the meantime, I am living life as fully as I can.  I have always been athletic and vibrantly healthy .  For many years I ran and swam, too. I didn't think I 'd get cancer.  I read that UPSC tends to affect African American women who are thin and have had children. Other than being slender, the other characteristics do not apply to me. There is just no rhyme or reason why this happens to any of us.

 I am wishing you peace during this time,

Cathy

 

AWK

Abbycat2 said:

Bob, I hope today is a better day

Ro mentioned that most of us got a worse diagnosis following our surgery based on the pathology report.  My uterine biopsy indicated that I had a papillary type cancer, grade  2. Well , I found out that I had papillary serous carcinoma which is always a grade 3- the most aggressive.  I also found out that it was metastatic as it had spread to my left ovary and to the outside of the ovary. I had a positive wash.  I don 't know if my cancer will return or not and I have no control over it . In the meantime, I am living life as fully as I can.  I have always been athletic and vibrantly healthy .  For many years I ran and swam, too. I didn't think I 'd get cancer.  I read that UPSC tends to affect African American women who are thin and have had children. Other than being slender, the other characteristics do not apply to me. There is just no rhyme or reason why this happens to any of us.

 I am wishing you peace during this time,

Cathy

 

Hi Cathy

i keep thinking about your trip to the Galapagos Islands and hopefully Alaska too!  You always inspire me as do the other ladies here, especially Ro and Helen.   All of you remind me we have many things ahead of us.  Bob and Lorraine - you do too.  Hugs.  Anne

Sandy3185

Abbycat2 said:

Bob, I hope today is a better day

Ro mentioned that most of us got a worse diagnosis following our surgery based on the pathology report.  My uterine biopsy indicated that I had a papillary type cancer, grade  2. Well , I found out that I had papillary serous carcinoma which is always a grade 3- the most aggressive.  I also found out that it was metastatic as it had spread to my left ovary and to the outside of the ovary. I had a positive wash.  I don 't know if my cancer will return or not and I have no control over it . In the meantime, I am living life as fully as I can.  I have always been athletic and vibrantly healthy .  For many years I ran and swam, too. I didn't think I 'd get cancer.  I read that UPSC tends to affect African American women who are thin and have had children. Other than being slender, the other characteristics do not apply to me. There is just no rhyme or reason why this happens to any of us.

 I am wishing you peace during this time,

Cathy

 

UPSC profile

you know Cathy, I've read that also and I find it so strange that there are few, if any, African American women on this site. I was 67 when diagnosed. I am not and was not slim or African American. I have had three children and was in good health at the time of diagnosis. While many here are slim, many of us are or were overweight. Some have had children and some have not. I wonder how they gather these statistics. Well, as Jazzy always said, we are all a statistic of one!  Sandy

AWK

Sandy3185 said:

UPSC profile

you know Cathy, I've read that also and I find it so strange that there are few, if any, African American women on this site. I was 67 when diagnosed. I am not and was not slim or African American. I have had three children and was in good health at the time of diagnosis. While many here are slim, many of us are or were overweight. Some have had children and some have not. I wonder how they gather these statistics. Well, as Jazzy always said, we are all a statistic of one!  Sandy

That is what caught everyone off guard for me too!

Not slim but not obese, more like average.  Healthy.  Never had children, 50 at diagnosis and had not gone thourgh menopause.  The pathologist underlined my active follicles found in my surgery In her report confirming the UPSC.  Rarefied strata we ladies are in.  I think about the minorities who may have  a propensity for this but aren't aware of the risks and about how do we get the word out in those communities.  I realize I am lucky with the access to care that I have but I missed the run up to my diagnosis.  My doctors think I was probably symptomatic for roughly six months prior to diagnosis.  

Still undergoing treatment and still thriving!

bob13440

AWK said:

That is what caught everyone off guard for me too!

Not slim but not obese, more like average.  Healthy.  Never had children, 50 at diagnosis and had not gone thourgh menopause.  The pathologist underlined my active follicles found in my surgery In her report confirming the UPSC.  Rarefied strata we ladies are in.  I think about the minorities who may have  a propensity for this but aren't aware of the risks and about how do we get the word out in those communities.  I realize I am lucky with the access to care that I have but I missed the run up to my diagnosis.  My doctors think I was probably symptomatic for roughly six months prior to diagnosis.  

Still undergoing treatment and still thriving!

today

it was better, thanks for inquiring. Here's what my concern is- right after her diagnosis, they checked her lungs to see if it had spread to them, thankfully they were clear. They told us if had spread there, it would be a matter of weeks. Her coughing has become worse and it scares the heck out of me to think maybe it has spread to he rlungs since initial exam. We're going back tomorrow for more blood work, i will them my concerns then. I really am sorry for bringing such dark thoughts to this positive message board. All of your comments have been so inspiring and it has been theraputic. I really do feel better after leaving this board.

 

So thankful I found you ladies

AWK

bob13440 said:

today

it was better, thanks for inquiring. Here's what my concern is- right after her diagnosis, they checked her lungs to see if it had spread to them, thankfully they were clear. They told us if had spread there, it would be a matter of weeks. Her coughing has become worse and it scares the heck out of me to think maybe it has spread to he rlungs since initial exam. We're going back tomorrow for more blood work, i will them my concerns then. I really am sorry for bringing such dark thoughts to this positive message board. All of your comments have been so inspiring and it has been theraputic. I really do feel better after leaving this board.

 

So thankful I found you ladies

We have all had, and in some cases - continue to have those days

I feel badly that the doctors are putting timelines on this for you.  My doctors haven't done that at all and we just focused on getting through this and livIng fully.  One of my closest Chemosabes had her stage ivb ovarian found when she was admitted to the hospital for what they thought was pneumonia In Jan 2013.  She is now NED after much treatment and two surgeries.  She had ascites in the lungs when diagnosed.  She is doing well and we push and pull each other along on our journeys.  I have five inoperable and irradiatable Mets all spread out including one in my pericardial sac adjacent to my heart.  I told the doctors that I knew I could do this and needed them to either believe in that or find a replacement.  They believe in my fight and tell me I am a statistic of one.  I am doing well and lving fully.  That was in March of 2014 at my first three month checkup.  We have never looked back. My advice, recognizing it is unsolicited, is that you two decide what you want to do, how you want to do it and demand the proper support and consensus you need to make that happen.   You guys make the decisions and the team is there to educate and treat.   Stay strong.  

AWK

AWK said:

We have all had, and in some cases - continue to have those days

I feel badly that the doctors are putting timelines on this for you.  My doctors haven't done that at all and we just focused on getting through this and livIng fully.  One of my closest Chemosabes had her stage ivb ovarian found when she was admitted to the hospital for what they thought was pneumonia In Jan 2013.  She is now NED after much treatment and two surgeries.  She had ascites in the lungs when diagnosed.  She is doing well and we push and pull each other along on our journeys.  I have five inoperable and irradiatable Mets all spread out including one in my pericardial sac adjacent to my heart.  I told the doctors that I knew I could do this and needed them to either believe in that or find a replacement.  They believe in my fight and tell me I am a statistic of one.  I am doing well and lving fully.  That was in March of 2014 at my first three month checkup.  We have never looked back. My advice, recognizing it is unsolicited, is that you two decide what you want to do, how you want to do it and demand the proper support and consensus you need to make that happen.   You guys make the decisions and the team is there to educate and treat.   Stay strong.  

Just checking in on you both!

Bob and Lorraine, I have been keeping you both in my prayers and hoping your path is getting more clarity.  Sending you both positive energy and more prayers.  Anne

nempark

Think of you both also

I really don't post much, but I read all the time.  I think of you all the time.  God will give you the wisdom and strength to endure.  You will be amazed at how much you can endure.  Best wishes.  Please keep in touch.

bob13440

AWK said:

Just checking in on you both!

Bob and Lorraine, I have been keeping you both in my prayers and hoping your path is getting more clarity.  Sending you both positive energy and more prayers.  Anne

hello

surgery went well. her oxygen, blood sugar are low. they took her off of the I.V. this morning. they're aiming for chemo in 2 weeks.seems fast to me, but i trust their analysis. thanks for asking.

bob13440

nempark said:

Think of you both also

I really don't post much, but I read all the time.  I think of you all the time.  God will give you the wisdom and strength to endure.  You will be amazed at how much you can endure.  Best wishes.  Please keep in touch.

thank you

every thought and prayer is greatly appreciated

Ro10

bob13440 said:

hello

surgery went well. her oxygen, blood sugar are low. they took her off of the I.V. this morning. they're aiming for chemo in 2 weeks.seems fast to me, but i trust their analysis. thanks for asking.

Bob

Glad to hear that surgery went well for Lorraine.  Did she have DaVinci surgery, or an open hysterectomy.  I started chemo 3 weeks after my surgery.  Most people do start chemo very soon after surgery.  I hope Lorraine starts feeling better each day.

I hope you are taking care of yourself, too.  Now the wait for the pathology is not easy.    In peace and caring.  

bob13440

Ro10 said:

Bob

Glad to hear that surgery went well for Lorraine.  Did she have DaVinci surgery, or an open hysterectomy.  I started chemo 3 weeks after my surgery.  Most people do start chemo very soon after surgery.  I hope Lorraine starts feeling better each day.

I hope you are taking care of yourself, too.  Now the wait for the pathology is not easy.    In peace and caring.  

Ro

open surgery. walked quite a bit today. so far so good on this lengthy road, prepared for ups and downs... i'm such a lucky man to have her, i love her so much.

AWK

bob13440 said:

thank you

every thought and prayer is greatly appreciated

Sending prayers

My first chemo was exactly 2 weeks after my surgery and at the time I wanted to slow it down.  Heal.  Get mentally prepared.  Looking back I am so glad they pushed me through.  No time to stress or overthink it.  Drains came out on Monday, lunch with my girlfriends and in the "Lounge" Tueaday at 8.  The procedure to put in the port hurt (the prior Thursday) but now when I look back I am glad they kept it moving quickly.  

Any questions ask.  Take in all of her medications and prescriptions and have the onc nurses write out a schedule for her.  That was the best advice someone gave me.  My husband made up an excel sheet to keep track of what pills at what times as my chemo brain would lose track.  Don't be "brave" they prescribe the meds for a reason and they do help.  Don't forget the pillow.  

Sending healing vibes.  Anne

txtrisha55

AWK said:

Sending prayers

My first chemo was exactly 2 weeks after my surgery and at the time I wanted to slow it down.  Heal.  Get mentally prepared.  Looking back I am so glad they pushed me through.  No time to stress or overthink it.  Drains came out on Monday, lunch with my girlfriends and in the "Lounge" Tueaday at 8.  The procedure to put in the port hurt (the prior Thursday) but now when I look back I am glad they kept it moving quickly.  

Any questions ask.  Take in all of her medications and prescriptions and have the onc nurses write out a schedule for her.  That was the best advice someone gave me.  My husband made up an excel sheet to keep track of what pills at what times as my chemo brain would lose track.  Don't be "brave" they prescribe the meds for a reason and they do help.  Don't forget the pillow.  

Sending healing vibes.  Anne

Happy to hear the surgery went well.

I started chemo 4 weeks after surgery. Dr did not give me a choice about the port. Please get one. I have heard from others that the chemo destroys the veins. Good luck to your wife and to you. Remember to take care of yourself too. Trish

bob13440

txtrisha55 said:

Happy to hear the surgery went well.

I started chemo 4 weeks after surgery. Dr did not give me a choice about the port. Please get one. I have heard from others that the chemo destroys the veins. Good luck to your wife and to you. Remember to take care of yourself too. Trish

shots

did any of you have to give yourself shots in the stomach when you got home?

txtrisha55

bob13440 said:

shots

did any of you have to give yourself shots in the stomach when you got home?

Yes for 30 days. Since I am

Yes for 30 days. Since I am scared of needles my daughter had to do this for me. It is not that bad but the drug is a bloog thiner so you do not get blood clots. At the injection spot a bruise will form. So the stomach looks like you are a punching bag. I had to get my son in law to give me the shot a day cause my daughter freaked out about the bruises covering my stomach. I made it through the shots. It hurts because of the shot but once the needle is out the bruising does not hurt. Best of luck to you and your wife. Trish in texas.

bob13440

txtrisha55 said:

Yes for 30 days. Since I am

Yes for 30 days. Since I am scared of needles my daughter had to do this for me. It is not that bad but the drug is a bloog thiner so you do not get blood clots. At the injection spot a bruise will form. So the stomach looks like you are a punching bag. I had to get my son in law to give me the shot a day cause my daughter freaked out about the bruises covering my stomach. I made it through the shots. It hurts because of the shot but once the needle is out the bruising does not hurt. Best of luck to you and your wife. Trish in texas.

OK

thanks Trish. So many new things, we got this though.