Dis Breast Cancer Survivors Part IV - GAGWTA

[luvmarypoppins]

Happy Friday everyone!!

Well I survived the trip to NYC with dh. It only took us 2 1/2 hours in bumper to bumper traffic to get there. We were 45 min late for our appt. and I kept calling the office and told them not to cancel it. The secretary thought we were caught up in all the times square accident mess.

This surgeon does not mess around there for sure. He is fast, efficient to the max and does not spend all that much time with the patients. But he answered all our questions and he also did a scope of me, nothing like having a camera put down you and then did another sonogram. He said he feels that this surgery will be nothing like the last one. He commented on my rare cancer and said they get all the rare ones in the city too and he also said I am of course more rare again because it recurred. This guy is on the surgical committee of the american thy. assoc and also has a grant to study the molecular aspects of thy cancer, so I am sure he is just waiting for my pathology and biopsy stuff post op. He said I will only be in the hosp. overnight with a drain that will come out the next day and I should be able to come home.
It says I have to go to the day surgery place. I dont know about that. If that is just how they do things there or my ins. not sure but I hope there are not any problems. The univ. hosp. wont even let me go to the day surgery place for surgery. They said there I have a bad history, lol. Didnt like that dh will not be able to stay with me in the room overnight. We did tell him that I usually do not recover well, so we shall see what happens. He said the scar will be another two inches. He is also happy that it seems that the cancer is only in the neck area. He said he will go in and clean it up and clean it out. He said he is doing a compartmental neck dissection He was using some terms I havent heard before but maybe those are ones he uses himself.

So the surgery is June 9. Dont know the time but dh wants to go head in at around 4 am so we do not get stuck in all that horrible traffic again. We shall see. So now monday I am going for the pre op physical. I can only get the ekg there and then I need blood work and a chest xray and I have to make sure all this stuff gets sent to NYC. My head spins with all of this. Just like Mrs. Incredible said, its so easy when one place is doing it all. I had that in the past but now I am dealing with the new surgeon and hosp. for part of this. I anticipate lots of advocating for myself here.

So I got a nice little early bday present - a surgery date lol!

GAGWTA

 

[snappy]

Happy Friday everyone!!

Well I survived the trip to NYC with dh. It only took us 2 1/2 hours in bumper to bumper traffic to get there. We were 45 min late for our appt. and I kept calling the office and told them not to cancel it. The secretary thought we were caught up in all the times square accident mess.

This surgeon does not mess around there for sure. He is fast, efficient to the max and does not spend all that much time with the patients. But he answered all our questions and he also did a scope of me, nothing like having a camera put down you and then did another sonogram. He said he feels that this surgery will be nothing like the last one. He commented on my rare cancer and said they get all the rare ones in the city too and he also said I am of course more rare again because it recurred. This guy is on the surgical committee of the american thy. assoc and also has a grant to study the molecular aspects of thy cancer, so I am sure he is just waiting for my pathology and biopsy stuff post op. He said I will only be in the hosp. overnight with a drain that will come out the next day and I should be able to come home.
It says I have to go to the day surgery place. I dont know about that. If that is just how they do things there or my ins. not sure but I hope there are not any problems. The univ. hosp. wont even let me go to the day surgery place for surgery. They said there I have a bad history, lol. Didnt like that dh will not be able to stay with me in the room overnight. We did tell him that I usually do not recover well, so we shall see what happens. He said the scar will be another two inches. He is also happy that it seems that the cancer is only in the neck area. He said he will go in and clean it up and clean it out. He said he is doing a compartmental neck dissection He was using some terms I havent heard before but maybe those are ones he uses himself.

So the surgery is June 9. Dont know the time but dh wants to go head in at around 4 am so we do not get stuck in all that horrible traffic again. We shall see. So now monday I am going for the pre op physical. I can only get the ekg there and then I need blood work and a chest xray and I have to make sure all this stuff gets sent to NYC. My head spins with all of this. Just like Mrs. Incredible said, its so easy when one place is doing it all. I had that in the past but now I am dealing with the new surgeon and hosp. for part of this. I anticipate lots of advocating for myself here.

So I got a nice little early bday present - a surgery date lol!

GAGWTA

Wow that traffic sounds awful. Sorry it was worse than usual on the day of your appointment. Sounds like you picked the right surgeon.

It's good to have the certainty of a surgery date. Did he say how long recovery at home will take?

I bet you were tired last night.

Hope all the presurgical goes smoothly. Hang in there.

 

[kittylady1972]

LuvMP - Glad you have a date that is soon and you'll get that over with and it sounds like the surgeon is great. I'm sending all my best to you!

 

[luvmarypoppins]

Happy Monday!!

In 3 days we were suppose to be in Disney, oh well, such is life. But I still think about it. I think we will go see the new Pirates movie. That might help get a disney fix!

The pre op went ok. We are still trying to get used to my new pcp. She is young and talks so fast. I dont know if it is a cultural thing with her or just the way she practices. I am glad I have an extra set of ears with dh there and she walks around the room alot but this time she had to sit at the computer alot so that helped. So I got the physical and ekg done and now tomm. ds will try to take me for the chest xray and blood work.

I talked to her about coordinaeing everything. She says she likes the patient portal the hosp. has. Has anyone used something like this. They also have one where I am having the surgery. Here she said she gets messages from patient emails much faster then the message center which I call, so I will be looking into that. I started the invitation process now. Yup, more head spinning, lol,

Had a nice bday lunch with the family and ds2 gf minus ds3 so we still need to do a real family thing with everyone sometime. I just grabbed the 2 ds because I know they have other plans for the week already.

kittlyady - I hope you have a great trip too. I always love reading and hearing about everyones food adventures the most and of course the new avatar land. One of the christian authors I follow went to the preview events because her son is an imagineer who helped with the design process. Lucky her for sure.

Linda - bet your freshman are glad to have their first year completed.

Hope everyone is doing well.

GAGWTA

 

[kittylady1972]

Happy Monday!!

In 3 days we were suppose to be in Disney, oh well, such is life. But I still think about it. I think we will go see the new Pirates movie. That might help get a disney fix!

The pre op went ok. We are still trying to get used to my new pcp. She is young and talks so fast. I dont know if it is a cultural thing with her or just the way she practices. I am glad I have an extra set of ears with dh there and she walks around the room alot but this time she had to sit at the computer alot so that helped. So I got the physical and ekg done and now tomm. ds will try to take me for the chest xray and blood work.

I talked to her about coordinaeing everything. She says she likes the patient portal the hosp. has. Has anyone used something like this. They also have one where I am having the surgery. Here she said she gets messages from patient emails much faster then the message center which I call, so I will be looking into that. I started the invitation process now. Yup, more head spinning, lol,

Had a nice bday lunch with the family and ds2 gf minus ds3 so we still need to do a real family thing with everyone sometime. I just grabbed the 2 ds because I know they have other plans for the week already.

kittlyady - I hope you have a great trip too. I always love reading and hearing about everyones food adventures the most and of course the new avatar land. One of the christian authors I follow went to the preview events because her son is an imagineer who helped with the design process. Lucky her for sure.

GAGWTA

Pirates is a GREAT idea to get into some Disney spirit for sure!

Glad the pre-op went well and sorry the pcp isn't talking slowly for you. Definitely good to have another set of ears there. Both my pcp and my doctors at JHU use a patient portal service...different ones for each one...and it's nice to see everything in one place. I like to log in and read through all of my test results and then do my own research on them. I've sent messages to my pcp through it and it's nice to get those responses.

Glad you had some family time as well.

I'll definitely report back on our trip. I'm trying so hard not to read too much online about the new Pandora stuff so I can be surprised but it's tough.

 

[rajak73]

Happy Monday!!

In 3 days we were suppose to be in Disney, oh well, such is life. But I still think about it. I think we will go see the new Pirates movie. That might help get a disney fix!

The pre op went ok. We are still trying to get used to my new pcp. She is young and talks so fast. I dont know if it is a cultural thing with her or just the way she practices. I am glad I have an extra set of ears with dh there and she walks around the room alot but this time she had to sit at the computer alot so that helped. So I got the physical and ekg done and now tomm. ds will try to take me for the chest xray and blood work.

I talked to her about coordinaeing everything. She says she likes the patient portal the hosp. has. Has anyone used something like this. They also have one where I am having the surgery. Here she said she gets messages from patient emails much faster then the message center which I call, so I will be looking into that. I started the invitation process now. Yup, more head spinning, lol,

Had a nice bday lunch with the family and ds2 gf minus ds3 so we still need to do a real family thing with everyone sometime. I just grabbed the 2 ds because I know they have other plans for the week already.

kittlyady - I hope you have a great trip too. I always love reading and hearing about everyones food adventures the most and of course the new avatar land. One of the christian authors I follow went to the preview events because her son is an imagineer who helped with the design process. Lucky her for sure.

Linda - bet your freshman are glad to have their first year completed.

Hope everyone is doing well.

GAGWTA

Just giving you a great big !!

 

[snappy]

The clinic where my internist and endo practice has had a patient portal for a few years. I have found it very useful. Much better to send email direct to the docs rather than leaving a phone message and have a nurse return my call, which I invariably miss, and on and on the phone tag goes. Results from diagnostic tests are posted too, along with the same results from earlier years. Very helpful.

 

[Tuffcookie]

Maryann, I have been reading about your latest "adventures". You are in my prayers. I'm glad you now have a surgery date. I'm looking forward to the new Pirates movie too. Hugs to you and John.

TC

 

[snappy]

Belated birthday wishes, LMP!

 

[luvmarypoppins]

Maryann, I have been reading about your latest "adventures". You are in my prayers. I'm glad you now have a surgery date. I'm looking forward to the new Pirates movie too. Hugs to you and John.

TC

Thanks so much Cindy!

 

[luvmarypoppins]

Hope everyone had a good week end. More grey and rain here for the next three days. Honestly I dont know where the sun is lol. Everyone seems grumpy

It was nice to have a week off from drs. tests, phone calls etc.

Today I just paid bills from the endo and rad. onc. He was so nice and billed my ins co. $425. He did speak to us for an hour before he went off to a hosp. fundraiser with Joe Biden. I also signed up for the patient portal. It showed my latest blood tests and my upcoming appts. at the end of the summer and Sept.

Now I have to look into the other hospitals patient portal stuff and see if its like this one.

Yest. was cancer survivors day at the hosp. I never go as they treat thy cancer patients like 2nd class citizens there anyway. The speaker was Jenn Arnold from The Little Couple. She used to work there. A girl from our church said she was pretty bossy when she was there and yelled at some of the drs. too.

All I have to do this week is wait for the call on wed. for the or time. At least friday when we drive in they said it will be sunny and no rain, hooray!. I did have the pastor and elders of my church pray over me, so that gave me some peace too.

GAGWTA. Hope everyone is doing well

 

[Feralpeg]

LMP, I keep thinking about you! Glad your surgery is scheduled soon. Waiting is the worst!

I have an appointment with a GI doctor on 6/12. About six month ago, I started having an issue with food coming back up my esophogus. I also feel slightly nausous after I eat. I did some reading (I know...not a good idea). They said this could be the result of scar tissue from my radiation treatment. I'm hoping that is all. Not looking forward to the idea of being scoped, but I want to find out what is causing this. I just had a CT with contrast of my chest and abdomen in December. Nothing bad then. Fingers crossed!

 

[snappy]

I want to let you know I am thinking about you today LMP, and that you will be in my thoughts and prayers tomorrow. Please let us know how you are doing when you are up to that. Good luck sweetie.

 

[Pea-n-Me]

I want to let you know I am thinking about you today LMP, and that you will be in my thoughts and prayers tomorrow. Please let us know how you are doing when you are up to that. Good luck sweetie.

Same! Sending prayers and good thoughts.

 

[ThistleMae]

Hello Everyone. I was so happy to find this site. It's great to be able to talk to folks going through the same "waiting" game. It's such torture, and I try not to think about it, but it's always just right there below the surface. I'm a two year breast cancer survivor. I underwent the radiation and had clean margins so chemo was not recommended. I elected not to take the "drugs" they prescribe because of the risk of uterine/cervical cancer. Well, after two years of being menopausal, I had a recent bleed. So, after the ultrasound, they are recommending a uterine biopsy. I feel like I'm going through the process all over again! Just waiting to get the worst news, and thinking about what I need to plan if I'm going to die. My biopsy isn't until June 30th. If that is bad, it will be hysterectomy time....how wonderful....and then, has it spread to the lymph nodes? I feel pretty numb. I'm not ready to die...but the universe may have something else in store for me. I feel all the anxiety and all the hope in here as well. I didn't think I wanted to know when I was going to die...but fate may have awarded me that gift. I know I should stay positive, but in reality, I may get really bad news. Whatever the case, I'm going to Disney on July 21st and will have fun, no matter what. There are times I can forget about it as long as I keep busy but then there are the down times, when it's all I can think about. Thank you all for being here and sharing your stories. I feel less alone.

 

[Pea-n-Me]

Hello Everyone. I was so happy to find this site. It's great to be able to talk to folks going through the same "waiting" game. It's such torture, and I try not to think about it, but it's always just right there below the surface. I'm a two year breast cancer survivor. I underwent the radiation and had clean margins so chemo was not recommended. I elected not to take the "drugs" they prescribe because of the risk of uterine/cervical cancer. Well, after two years of being menopausal, I had a recent bleed. So, after the ultrasound, they are recommending a uterine biopsy. I feel like I'm going through the process all over again! Just waiting to get the worst news, and thinking about what I need to plan if I'm going to die. My biopsy isn't until June 30th. If that is bad, it will be hysterectomy time....how wonderful....and then, has it spread to the lymph nodes? I feel pretty numb. I'm not ready to die...but the universe may have something else in store for me. I feel all the anxiety and all the hope in here as well. I didn't think I wanted to know when I was going to die...but fate may have awarded me that gift. I know I should stay positive, but in reality, I may get really bad news. Whatever the case, I'm going to Disney on July 21st and will have fun, no matter what. There are times I can forget about it as long as I keep busy but then there are the down times, when it's all I can think about. Thank you all for being here and sharing your stories. I feel less alone.

Welcome, ThistleMae, glad you found us. And love your username! This is why I came up with the idea for this thread in the first place - knowing how hard it is to go through all these heavy thoughts, and having others who've been there to share them with and you can derive support from, etc. Not everyone understands and/or can support us in the way we need it, at times, even those well-meaning folks closest to us.

I'll say that not everyone who has cancer or the threat of cancer feels like they're going to die, and that's good. Not too long ago a coworker talked to me about her BC and shared with me that her mother had had it as well. When I mentioned the fear of dying, she was a little taken aback and said, "Oh, no, I don't think I'm going to die from this!" "I'm just stressed about all I know it's going to involve!" Ah! Glad to hear it!! I, myself, did have the fear of dying, like yourself. Not sure what your background is (and you certainly don't have to share) but I think sometimes if you're accustomed to loss somehow, it's kind of what your brain is programmed for and it's natural to think this is going to be it. It took me about three years to finally get out of that mode of thinking, and it was a painful process to boot. I actually had to accept that I could die and work my way back up from there. Not easy when you have two small children to raise. As a nurse, too, it was hard for me during that time to take care of people who were dying. (Different today, I actually volunteer for those people and families now.) I've done a lot of work with myself and spirituality to get to a place where I can accept dying as a natural part of the life process, but that's probably more for another day. It's also not to say that when I'm in an MRI machine or undergoing some type of testing it doesn't bring me back to those difficult feelings I experienced during my cancer experience. It does. So I totally get where you're coming from and how you may be feeling. Just waiting for the other shoe to drop.

Now I'm going to take my cancer survivor hat halfway off to make room to put my nurse's cap halfway on. From your post, and from what I know about BC and uterine biopsies and hysterectomies and all that (from my own experiences also), it sounds as if your breast cancer had a very good prognosis given that you were able to need only surgery and radiation. That means no local or distant spread, and an almost 100% cure rate. That is really something to be happy about and thankful for. You caught it early and/or it was not super aggressive. Amen! So you got through that, had a decision to make about the medication, chose not to take it, and now you're hit with this other issue. Since you say you're in menopause I take it you are a little bit older and in a natural menopause. That's ok. Now you're having some bleeding and they want to do a uterine biopsy. OK stop.

Uterine bleeding is very often related to an imbalance of female hormones in the body. Not necessarily cancer. When they do the biopsy oftentimes first they are looking at the lining of your uterus to look to see what the cells are made up of. It can be a little painful for a few seconds but it's otherwise relatively simple and the discomfort is generally relieved pretty well with an NSAID like motrin. It takes a few to several days for the results to come back. Sometimes they do recommend a hysterectomy. And let's face it, nobody really wants to have that. Until you want to have it, lol. I avoided one for a long time until I was begging to have one. I won't get into the gory details but there was a lot of progressive pain and bleeding involved so by the time I had it it was a great relief. And the recovery wasn't too bad. My aunt who is 82 just went through the worst case scenario - uterine bleeding, cancer diagnosis, hysterecomy, and recovery. And she is doing fantastic now, all the cancer is GONE. And she was given a good prognosis as well. This isn't to say that what you have is necessarily cancer, but just that a) it might not be and b) even if it is, you will likely have a great chance of having a complete cure. Certainly not dying from it. (Although I understand the fear!) Something to contemplate but do you think you could be feeling a little guilty (or some other emotion) about not taking the meds (which, btw, was fine, we have many posters here who also chose not to) and thinking that somehow this is a result of your decision or something like that? Just something that came out at me where you mentioned you were fearful of uterine bleeding with the meds, etc.

Anyway... just because you had breast cancer it doesn't necessarily mean you are prone to get uterine cancer. Uterine bleeding is fairly common in women, especially when we get to a certain age. But something to discuss with your medical team, ie the specifics of your case. I'm just saying that even if you hadn't had BC, this could well have happened to you anyway, as it does for lots of us women in mid-life. So I think it's probably pretty safe to say you have a pretty good shot at not dying from this! OK? A saying one of our early posters, NHAnn, brought here (and it later became a thing on the Dis) is "Don't bleed before you're shot". I'd say it applies here. One step at a time, and we'll be here with you all the way, any time of day or night, if you want to talk.

You might want to look up some posts from a poster called kimblebee. I think she might read here, doesn't usually post, but if she sees this she may. But she recently had a uterine cancer scare and I bet her posts will be helpful for you to read. IIR she did not ultimately have cancer but I think she did have the hyst. But don't quote me on that.

 

[Pea-n-Me]

Sending out more good thoughts and prayers to luvmarypoppins today! Please update us when you can!

 

[Dancind]

LMP, thinking of you. Thistlemae, thinking of you too. Let us know what you learn. We always like good news, too.

Anyone heard from Janet/Smileyface?

 

[ThistleMae]

Welcome, ThistleMae, glad you found us. And love your username! This is why I came up with the idea for this thread in the first place - knowing how hard it is to go through all these heavy thoughts, and having others who've been there to share them with and you can derive support from, etc. Not everyone understands and/or can support us in the way we need it, at times, even those well-meaning folks closest to us.

I'll say that not everyone who has cancer or the threat of cancer feels like they're going to die, and that's good. Not too long ago a coworker talked to me about her BC and shared with me that her mother had had it as well. When I mentioned the fear of dying, she was a little taken aback and said, "Oh, no, I don't think I'm going to die from this!" "I'm just stressed about all I know it's going to involve!" Ah! Glad to hear it!! I, myself, did have the fear of dying, like yourself. Not sure what your background is (and you certainly don't have to share) but I think sometimes if you're accustomed to loss somehow, it's kind of what your brain is programmed for and it's natural to think this is going to be it. It took me about three years to finally get out of that mode of thinking, and it was a painful process to boot. I actually had to accept that I could die and work my way back up from there. Not easy when you have two small children to raise. As a nurse, too, it was hard for me during that time to take care of people who were dying. (Different today, I actually volunteer for those people and families now.) I've done a lot of work with myself and spirituality to get to a place where I can accept dying as a natural part of the life process, but that's probably more for another day. It's also not to say that when I'm in an MRI machine or undergoing some type of testing it doesn't bring me back to those difficult feelings I experienced during my cancer experience. It does. So I totally get where you're coming from and how you may be feeling. Just waiting for the other shoe to drop.

Now I'm going to take my cancer survivor hat halfway off to make room to put my nurse's cap halfway on. From your post, and from what I know about BC and uterine biopsies and hysterectomies and all that (from my own experiences also), it sounds as if your breast cancer had a very good prognosis given that you were able to need only surgery and radiation. That means no local or distant spread, and an almost 100% cure rate. That is really something to be happy about and thankful for. You caught it early and/or it was not super aggressive. Amen! So you got through that, had a decision to make about the medication, chose not to take it, and now you're hit with this other issue. Since you say you're in menopause I take it you are a little bit older and in a natural menopause. That's ok. Now you're having some bleeding and they want to do a uterine biopsy. OK stop.

Uterine bleeding is very often related to an imbalance of female hormones in the body. Not necessarily cancer. When they do the biopsy oftentimes first they are looking at the lining of your uterus to look to see what the cells are made up of. It can be a little painful for a few seconds but it's otherwise relatively simple and the discomfort is generally relieved pretty well with an NSAID like motrin. It takes a few to several days for the results to come back. Sometimes they do recommend a hysterectomy. And let's face it, nobody really wants to have that. Until you want to have it, lol. I avoided one for a long time until I was begging to have one. I won't get into the gory details but there was a lot of progressive pain and bleeding involved so by the time I had it it was a great relief. And the recovery wasn't too bad. My aunt who is 82 just went through the worst case scenario - uterine bleeding, cancer diagnosis, hysterecomy, and recovery. And she is doing fantastic now, all the cancer is GONE. And she was given a good prognosis as well. This isn't to say that what you have is necessarily cancer, but just that a) it might not be and b) even if it is, you will likely have a great chance of having a complete cure. Certainly not dying from it. (Although I understand the fear!) Something to contemplate but do you think you could be feeling a little guilty (or some other emotion) about not taking the meds (which, btw, was fine, we have many posters here who also chose not to) and thinking that somehow this is a result of your decision or something like that? Just something that came out at me where you mentioned you were fearful of uterine bleeding with the meds, etc.

Anyway... just because you had breast cancer it doesn't necessarily mean you are prone to get uterine cancer. Uterine bleeding is fairly common in women, especially when we get to a certain age. But something to discuss with your medical team, ie the specifics of your case. I'm just saying that even if you hadn't had BC, this could well have happened to you anyway, as it does for lots of us women in mid-life. So I think it's probably pretty safe to say you have a pretty good shot at not dying from this! OK? A saying one of our early posters, NHAnn, brought here (and it later became a thing on the Dis) is "Don't bleed before you're shot". I'd say it applies here. One step at a time, and we'll be here with you all the way, any time of day or night, if you want to talk.

You might want to look up some posts from a poster called kimblebee. I think she might read here, doesn't usually post, but if she sees this she may. But she recently had a uterine cancer scare and I bet her posts will be helpful for you to read. IIR she did not ultimately have cancer but I think she did have the hyst. But don't quote me on that.

Thank you so much for this! I do try and be hopeful, but mainly try not to think about it, till I have to think about it and make decisions. I am a planner, thus.....what if I am going to die, so many things to do to get ready, kind of like planning for a permanent vacation...LOL. I'm trying to keep my sense of humor. I'd definitely like to live longer, and I just retired two years ago, so I have a lot more life to live. I just went through a knee replacement and have Achilles tendonitis in my foot on the other side. So, right now I'm in PT...again....so it just seems like too much right now. I'm going to go hiking today...and I'm planning on having a good time. I'll be checking in here regularly now. The support is so appreciated. I know the feeling about others not understanding, but they do try, sometimes they just don't know what to say. It's awkward for them I think. And they don't want to think about it either, it's just too scary. So...thank you from the bottom of my heart for your reply. Stay in touch!

 

[Tuffcookie]

Hi ladies. Just checking to see if anyone has heard from LMP. LMP, healing prayers!

TC