Level 3 Infiltrating Ductal Carcinoma
Comments
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Spinnr1, so nice to see yourSpinnr1 said:Sorry for not replying sooner
She's had several visits with dr's and numerous scans: an mri, a pet scan and some others and she has an appointment with a dr in Dallas in the morning. actually 2 dr's, an Oncologist and a surgeon.
We have learned... well not enough, but they did say stage 1 grade 3 and that it has spread to at least one lymph node and has some "satellite nodules" I think they called them.
they recommended chemo first then surgery, but we are seeing the dr's in dallas to see if they agree, and then we are making a gameplan from there. all I know is I am terrified, and a little hurt / angry that it happened to her so young, but like with her liver transplant and everything else, she has to do everything backwards so we are going to stick together and hope / pray for the best.
also I finished reading one book and started another when I realized I was overwhelming myself with information and I sat the book down and we have just been spending as much time as possible together doing anything and everything at all possible to get out minds off of it. she has been so tired lately that all she feels like doing is laying around watching movies in bed or whatever, so we have done that. anyways. I hope you are all doing ok, and I continue to pray for all of your well beings etc.
God Bless you all
oh yeah, is it normal for her to have redness / swelling?
and what does the HER2/Neu thing mean? They said it looked like both were positive
Spinnr1, so nice to see your post. I wondered what happened. I am sorry for all that you two have been going thru, but, you will get thru it! My prayers are with you!0 -
Wishing your girlfriend goodSpinnr1 said:Sorry for not replying sooner
She's had several visits with dr's and numerous scans: an mri, a pet scan and some others and she has an appointment with a dr in Dallas in the morning. actually 2 dr's, an Oncologist and a surgeon.
We have learned... well not enough, but they did say stage 1 grade 3 and that it has spread to at least one lymph node and has some "satellite nodules" I think they called them.
they recommended chemo first then surgery, but we are seeing the dr's in dallas to see if they agree, and then we are making a gameplan from there. all I know is I am terrified, and a little hurt / angry that it happened to her so young, but like with her liver transplant and everything else, she has to do everything backwards so we are going to stick together and hope / pray for the best.
also I finished reading one book and started another when I realized I was overwhelming myself with information and I sat the book down and we have just been spending as much time as possible together doing anything and everything at all possible to get out minds off of it. she has been so tired lately that all she feels like doing is laying around watching movies in bed or whatever, so we have done that. anyways. I hope you are all doing ok, and I continue to pray for all of your well beings etc.
God Bless you all
oh yeah, is it normal for her to have redness / swelling?
and what does the HER2/Neu thing mean? They said it looked like both were positive
Wishing your girlfriend good luck! If she is concerned with the redness and swelling, please have her call her doctor!0 -
Dr Appointment
went to the dr appointment today and got the official staging as they put it
Stage 3B Invasive Inflamatory Ductal Carcinoma HER2/neu positive
they are rushing to get a port put in so they can start chemo asap. the dr seemed a little angry that the dr's closer to us were so wishy washy about it. but I guess because of her being a liver transplant patient it takes a little more time to come up with a gameplan0 -
SpinnrSpinnr1 said:Dr Appointment
went to the dr appointment today and got the official staging as they put it
Stage 3B Invasive Inflamatory Ductal Carcinoma HER2/neu positive
they are rushing to get a port put in so they can start chemo asap. the dr seemed a little angry that the dr's closer to us were so wishy washy about it. but I guess because of her being a liver transplant patient it takes a little more time to come up with a gameplan
Stage 3B is not an easy row to hoe. On a brighter side, please know that I have been prowling BC discussion boards nonstop since November, and there are plenty of Stage 3B women out there kicking cancer in the ****. If your GF can handle a liver transplant, she is definitely up to this next fight. I am glad to know she is now in Dallas and receiving a big city standard of care. Moopy and I are up in St. Louis for exactly the same reason. My prayers are with you both!
Joe0 -
Spinnr1Spinnr1 said:First of all good luck and God Bless you with your journey I will say some prayers for you as well.
Her Consultation on the 11th is supposed to be with a breast surgeon. I will double check when I see her later.
I will be sure she makes an appointment with her dr to discuss the situation. thank you for this advice.
My thing is how do I know how good the surgeon is? I know she works at the women's center in our area, but we live in a small town and the surgeon is in a small city (Abilene Tx - if anyone is curious and wants to help since I can't think straight her Dr's name is Catherine Norton so if you feel like researching her that could help me) I just don't know if bigger is better or whatever
I will be sure to browse the american cancer site to know what questions to ask, and I will be sure she gets her pathology report
when they made the appointment for the consultation they told her to get the film from her mammo and biopsy, so we will do that as well
Thank you
You've rec'vd some great advice here. I, too, would suggest that you make contact with the ACS and, if you are able to talk to someone it may offer you some reassurance. Going to the dr visit with your friend is a huge help for your friend as she will probably miss much of what is being said and having someone take notes is very beneficial.
IDC and Grade III, as others have said, indicates the the location of the tumor and its size. It does not necessarily mean that the cancer has spread elsewhere. Your friend may need surgery, chemo, radiation, and/or hormonal therapy. All bc is different and what your friend's med'l team decides for a treatment plan will be determined after the surgery is completed.
Wishing your friend well and she is very lucky to have a friend like you!
dmc0 -
I just don't knowAortus said:Spinnr
Stage 3B is not an easy row to hoe. On a brighter side, please know that I have been prowling BC discussion boards nonstop since November, and there are plenty of Stage 3B women out there kicking cancer in the ****. If your GF can handle a liver transplant, she is definitely up to this next fight. I am glad to know she is now in Dallas and receiving a big city standard of care. Moopy and I are up in St. Louis for exactly the same reason. My prayers are with you both!
Joe
she's not going to dallas for treatment the dr says she knows the oncologist there and thinks he would be fine for her. the thing is noone will rush to get anything done they are taking forever, and the dr's in dallas are pissed that they waited around so long. we can't afford to stay in dallas and I can't drive back and forth. I just don't know what to do. trust the dr that says Abilene is a good enough place. she said that the dr in Abilene used to work for the M.D. Anderson center, so I tend to think he would do ok. I just want to get started with SOMETHING before the end of the week0 -
I think it is time that youSpinnr1 said:I just don't know
she's not going to dallas for treatment the dr says she knows the oncologist there and thinks he would be fine for her. the thing is noone will rush to get anything done they are taking forever, and the dr's in dallas are pissed that they waited around so long. we can't afford to stay in dallas and I can't drive back and forth. I just don't know what to do. trust the dr that says Abilene is a good enough place. she said that the dr in Abilene used to work for the M.D. Anderson center, so I tend to think he would do ok. I just want to get started with SOMETHING before the end of the week
I think it is time that you and your girlfriend took control of this and insist that her treatment be rushed, and, if not, why isn't it. We have to be our own advocates it seems anymore. If you need help, the ACS and the Susan B. Komen site will help you out. They offer rides, lodging and I think lots more. Just contact them.0 -
Spinnr1-sometimes things move more slowly...Spinnr1 said:I just don't know
she's not going to dallas for treatment the dr says she knows the oncologist there and thinks he would be fine for her. the thing is noone will rush to get anything done they are taking forever, and the dr's in dallas are pissed that they waited around so long. we can't afford to stay in dallas and I can't drive back and forth. I just don't know what to do. trust the dr that says Abilene is a good enough place. she said that the dr in Abilene used to work for the M.D. Anderson center, so I tend to think he would do ok. I just want to get started with SOMETHING before the end of the week
than we would like. More importantly, however, if you are questioning the competency of your small town dr there's nothing wrong with seeking other options. Just feeling that the Abilene dr would be "ok" is not necessarily good enough when you're talking about long-term care.
Someone suggested that you contact ACS and that's always a good idea. If you feel more confident with the Dallas med'l team, there may be financial support available from ACS to make the trip more feasible. I don't know how far you live from Dallas, but I do know that ACS and some hospitals provide for transportation needs, etc and you simply need to ask.
Originally, I had a dr from the Karmanos Center which is a nationally acclaimed cancer center. I know I received excellent medical care, but my onc was not one who listened to my individual needs. I knew I needed someone who was willing to accept me as a unique patient with unique needs that he didn't provide, so I found another onc in mid-treatment. If you are already having doubts, it may be in your GF's interest to seek out another dr. If this means Dallas, the time and inconvenience (even the expense) of making that choice is less of a concern than the confidence in the care that your GF will receive.
Over the next several weeks, months, you will be making some of the most challenging decisions of your lives, but just know that you both are in the hearts and prayers of many here on the boards. We have all been (some still are) where you are today, with various stages of bc, but in spite of our differences we understand the confusion, the fear, the anger, and the pain that comes with can**r.
Your GF is very fortunate to have you as a friend and I wish you both well.
dmc0 -
Keep at it, Spinnr
Maybe you could have the Dallas oncologist (who you said is anxious to get going) call the Abilene onc and let him or her know that time is of the essence.
This is what kind of happened with Moopy: our hometown oncologist wasn't in any particular hurry but our St. Louis oncologist wanted to get moving. So our St. Louis oncologist called our hometown oncologist and really got the ball rolling. Once you have decided on what chemo to do, the chemo itself can be administered just about anywhere that has an NCI Cancer Center.
And as the others have suggested, get in touch with the ACS asap!
Good luck,
Joe0 -
DEAR SPINNR AND GIRLFRIENDAortus said:Keep at it, Spinnr
Maybe you could have the Dallas oncologist (who you said is anxious to get going) call the Abilene onc and let him or her know that time is of the essence.
This is what kind of happened with Moopy: our hometown oncologist wasn't in any particular hurry but our St. Louis oncologist wanted to get moving. So our St. Louis oncologist called our hometown oncologist and really got the ball rolling. Once you have decided on what chemo to do, the chemo itself can be administered just about anywhere that has an NCI Cancer Center.
And as the others have suggested, get in touch with the ACS asap!
Good luck,
Joe
first off we are all praying for you. not only for your health and recovery but for strength to endure what you will have to go thru to beat this cancer. but you can beat it.
just take it one day at a time and one problem at a time.
i live in new england and plenty of people go to dana-farber cancer ctr. in boston for a consultation and then have their actual chemo and radiation administered closer to home with only visits and follow up back at dana-farber. most oncologist would be happy to work with a team at a bigger cancer hospital. is this something that your hometown dr. would be willing to do? if not then maybe you could find another dr. close to home that would work with the bigger hospital in dallas. i know all these consultations take time and you want to get going. why is your hometown dr. not in a hurry to start chemo? as someone else suggested make it clear to her that your girl wants to start as soon as possible.
you are right about getting overwhelmed. it can happen very easily, everything is so scary. but please know that this can be the hardest part. waiting and trying to decide on drs. and treatment plans. once you get going you actually get into a routine and feel as if you're doing something productive to fight this.
i can understand why your girl is tired, this is so draining emotionally and physically. i used to come home from every drs. appt and just have to be by myself and sleep.
do anything you can to keep her spirits up.
hang in there and good luck
i'm glad you updated us i was thinking of you both. i will keep you in my prayers.0 -
wellcorey50 said:DEAR SPINNR AND GIRLFRIEND
first off we are all praying for you. not only for your health and recovery but for strength to endure what you will have to go thru to beat this cancer. but you can beat it.
just take it one day at a time and one problem at a time.
i live in new england and plenty of people go to dana-farber cancer ctr. in boston for a consultation and then have their actual chemo and radiation administered closer to home with only visits and follow up back at dana-farber. most oncologist would be happy to work with a team at a bigger cancer hospital. is this something that your hometown dr. would be willing to do? if not then maybe you could find another dr. close to home that would work with the bigger hospital in dallas. i know all these consultations take time and you want to get going. why is your hometown dr. not in a hurry to start chemo? as someone else suggested make it clear to her that your girl wants to start as soon as possible.
you are right about getting overwhelmed. it can happen very easily, everything is so scary. but please know that this can be the hardest part. waiting and trying to decide on drs. and treatment plans. once you get going you actually get into a routine and feel as if you're doing something productive to fight this.
i can understand why your girl is tired, this is so draining emotionally and physically. i used to come home from every drs. appt and just have to be by myself and sleep.
do anything you can to keep her spirits up.
hang in there and good luck
i'm glad you updated us i was thinking of you both. i will keep you in my prayers.
well we went to Dallas so the dr's would join our team of dr's in abilene and they could all consult each other for help, so we're ahead of you there I guess. we are going to do the surgery in dallas most likely and probably any reconstruction. but we wanted to get the chemo started in abilene.
I'm hanging in there I just go crazy hearing statistics and people saying "I wouldn't do this I'd do this" and dr's not telling us the same thing and noone seeming to do their jobs without a someone making them.
anyways. to help her keep her mind right we have been staying at her moms house, and trying to have a "vacation" from it all. heading home tomorrow which means if my modem hasn't been fixed it may be a while before you hear from me again. keep the prayers coming for us and I will do the same for you all0 -
Abilene
I can't find any negative reports on the general surgeon your girlfriend is seeing. It appears that her father is a GYN which would be a positive. Hope this helps to reassure you. My advise is to keep a journal of dates with tests,reports,diagnosis and any information you are given at an appointment. It's very useful and you will soon forget what happened and when.0 -
SPINNRjanmill99 said:Abilene
I can't find any negative reports on the general surgeon your girlfriend is seeing. It appears that her father is a GYN which would be a positive. Hope this helps to reassure you. My advise is to keep a journal of dates with tests,reports,diagnosis and any information you are given at an appointment. It's very useful and you will soon forget what happened and when.
once you have a diagnosis like this everybody and their brother is there with an opinion.
and this can be very frustrating and scary. most people don't even realize what they're saying when they tell you stories about people with cancer and of course the stories of people who've died. you have to learn how to walk away from these people and i've even had to say "i don't want to hear that" or "please don't tell me that".
as far as people telling you what to do about treatment (unless they're a doctor)just thank them and tell them you have it under control.
hang in there, you're doing great.
will continue to pray for you both. and hope that this will soon be behind you.0 -
Spinnnr1-sounds like you have things under control...Spinnr1 said:well
well we went to Dallas so the dr's would join our team of dr's in abilene and they could all consult each other for help, so we're ahead of you there I guess. we are going to do the surgery in dallas most likely and probably any reconstruction. but we wanted to get the chemo started in abilene.
I'm hanging in there I just go crazy hearing statistics and people saying "I wouldn't do this I'd do this" and dr's not telling us the same thing and noone seeming to do their jobs without a someone making them.
anyways. to help her keep her mind right we have been staying at her moms house, and trying to have a "vacation" from it all. heading home tomorrow which means if my modem hasn't been fixed it may be a while before you hear from me again. keep the prayers coming for us and I will do the same for you all
and as I said before, your GF is very blessed to have you by her side. Know that we are all thinking of both you and that you are in our thoughts and prayers. If we don't hear from you for awhile, we'll know you're busy caring for your girlfriend while waiting for your computer to be fixed. Our prayers will still be coming your way!
dmc0 -
Praying for your girlfriendjanmill99 said:Abilene
I can't find any negative reports on the general surgeon your girlfriend is seeing. It appears that her father is a GYN which would be a positive. Hope this helps to reassure you. My advise is to keep a journal of dates with tests,reports,diagnosis and any information you are given at an appointment. It's very useful and you will soon forget what happened and when.
Praying for your girlfriend and you ! Keep us posted!0 -
We're backAlexis F said:Praying for your girlfriend
Praying for your girlfriend and you ! Keep us posted!
After her appointment in dallas we stayed the night and the next day (last tuesday) at her moms house. on the way homw we stopped in abilene and ended up getting a call saying the Oncologist (Dr Hirsch) 's nurse called and said that the hospital had a room for her to begin chemo so we stopped and ended up staying a week in the hospital together while she did her first round of chemo last wednesday and a round of herceptin this morning.
She did fabulous and is feeling good now (good enough to work on getting something special done for my birthday this weekend.)
she did her chemo last week through a picc line. then they put in a port on monday but it wasn't accessed today so they did the herceptin through an iv this morning so she got stuck plenty of times
hope you are all doing well.0 -
ThanksSpinnr1 said:We're back
After her appointment in dallas we stayed the night and the next day (last tuesday) at her moms house. on the way homw we stopped in abilene and ended up getting a call saying the Oncologist (Dr Hirsch) 's nurse called and said that the hospital had a room for her to begin chemo so we stopped and ended up staying a week in the hospital together while she did her first round of chemo last wednesday and a round of herceptin this morning.
She did fabulous and is feeling good now (good enough to work on getting something special done for my birthday this weekend.)
she did her chemo last week through a picc line. then they put in a port on monday but it wasn't accessed today so they did the herceptin through an iv this morning so she got stuck plenty of times
hope you are all doing well.
Thanks for the update and the upbeat news, Spinnr! Glad your GF is adjusting well to the chemo and is in good spirits - looks like her medical team is getting its act together.
Hope your birthday this weekend is a happy one: mine is on Saturday!
Joe0 -
ThanksAortus said:Thanks
Thanks for the update and the upbeat news, Spinnr! Glad your GF is adjusting well to the chemo and is in good spirits - looks like her medical team is getting its act together.
Hope your birthday this weekend is a happy one: mine is on Saturday!
Joe
Thanks for the birthday wish. I am taking the weekend off from the cancer thing and relaxing.
Happy Birthday to you as well, what are you now 20... 21? lol
Mine's sunday. was looking forward to it until we got her news in june... now it just seems like it's gonna be getting in the way. I've told her 10000 times to just forget it this year but she wants to celebrate it0 -
News
I forgot to mention, last week when we were in the hospital her dr (not dr hirsch, his fill in for the weekend)felt of the lump one day and then the next and she was amazed at how much it had shrunk and how softer it was and how the color had faded as well as my gf saying that there was alot less pain0
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