Meeting oncologist next week
So here's the newest... I just found out that I am HER2- and the MRI came back clean after my lumpectomy. My surgeon is scheduling me for the lymph node biopsy next. In the meantime I meet the oncologist next week and she is going to do the BRAC test since I am under 40. My tumor was 0.9cm. Can any of you point out some things for me to bring up in the meeting? Are there tests/issues that I need to be proactive with when talking to this new doc? I'm looking online as well but personal stories from someone who has been there and done that seems to be so much more meaningful, you know?
As an aside: My pap smear in June came back abnormal but my Dr said we would reevaluate if the same reading came back at next year's exam. Now that I have Stage I BC, I'm thinking I need to have that reevaluated now. Anyone have an experience like that? That ab pap was kind of forgotten about with all the BC stuff this summer and I only just remembered last night. If you've experienced anything like that, can you let me know what your process was????
My lumpectomy was two weeks ago and I am only just now getting back into my exercise regimen. I swam with my MASTERS group yesterday for the first time and didn't drown. It's amazing how much more positive and clear headed I am if I get in a workout.
Celebrating the good moments so I can better face the next hurdle,
Thanks to all of you!
Liz
Comments
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Hi Liz,
I cannot speak about abnormal PAP results as mine have always come back normal.
I'm thinking you need to ask yourself this question.........
If I wasn't diadnosised with bc would I be any less concerned about the abnormal PAP results?
I can say for sure that my Dr. would not let that one slide.
You need to be your own advacate when it comes to your health. Maybe talk to you cancer Dr. and see what they have to say. Better to be safe than sorry.
It's great that you are recovering so well from your surgery!! Keep it up.
Have the best day ever!!
Susan0 -
I love that you celebrate
I love that you celebrate the triumphs and any milestone...I am tickled that the secret mailbox is working so well for you. Save those, it will be a wonderful wedding gift for her! You have now initiated a new bond between mother and children; your 7 year old can follow when the writing mode kicks in, and this can be the start of something which is a part of all of your generations to come. How awesome would that be??!
About the Pap, I am not sure what kind of insurance coverage you have, but being that it was just done 3 months ago, it may not be covered by your insurance unless you can get your doctor to order it. I just had a mammo, as my radiated breast was causing me some problems, and being that it was just over 11 months since my last mammo, I ( seriously) could only have my RIGHT boob mammo'd . I had to make an appointment for mid September for the left one, so that it would be 12 months for the "unaffected" one. Just double check, to be on the safe side. GRRRRRRR!!!
Keep us in the loop, and we are with you every step of the way through your treatment plan. Oh, congrats on swimming!You Rock!
HUgs,
Chen♥0 -
Secret Mailboxchenheart said:I love that you celebrate
I love that you celebrate the triumphs and any milestone...I am tickled that the secret mailbox is working so well for you. Save those, it will be a wonderful wedding gift for her! You have now initiated a new bond between mother and children; your 7 year old can follow when the writing mode kicks in, and this can be the start of something which is a part of all of your generations to come. How awesome would that be??!
About the Pap, I am not sure what kind of insurance coverage you have, but being that it was just done 3 months ago, it may not be covered by your insurance unless you can get your doctor to order it. I just had a mammo, as my radiated breast was causing me some problems, and being that it was just over 11 months since my last mammo, I ( seriously) could only have my RIGHT boob mammo'd . I had to make an appointment for mid September for the left one, so that it would be 12 months for the "unaffected" one. Just double check, to be on the safe side. GRRRRRRR!!!
Keep us in the loop, and we are with you every step of the way through your treatment plan. Oh, congrats on swimming!You Rock!
HUgs,
Chen♥
That is such a cool idea...I wish I would have done that when my kids were younger. That is also a good idea to save them..as our 50ft. sis says.
I had pre-cervical cancer 15 years ago and had a complete hysterectomy. I didn't have any problems after that until the BC this past 9 months. I would have the Onc. recommend a pap for you so your inurance can cover it. I know mine recomended a colinoscopy twice now because My sweet Mom had colon-cancer.
hugs, jackie0 -
DEFINITELY celebrate the good moments!rjjj said:Secret Mailbox
That is such a cool idea...I wish I would have done that when my kids were younger. That is also a good idea to save them..as our 50ft. sis says.
I had pre-cervical cancer 15 years ago and had a complete hysterectomy. I didn't have any problems after that until the BC this past 9 months. I would have the Onc. recommend a pap for you so your inurance can cover it. I know mine recomended a colinoscopy twice now because My sweet Mom had colon-cancer.
hugs, jackie
Like talking boobies and bras with your daughters, and getting back to your exercise routine. All good!
I'm very glad to hear that you're meeting with an oncologist -- I'm a BIG proponent of talking with an oncologist as early in the process as possible. Good for you for being proactive and prepared!
I remember reading somewhere (I'm sorry I don't remember where) that chemo can cause abnormal pap results for up to 6 months afterwards -- so I would definitely put that on your list of questions for your oncologist. If you do end up needing to do chemo, she may want to address the abnormal pap result beforehand, rather than waiting and muddying up your results with chemo.
You might also just ask her if she recommends a PET scan. My oncologist ordered one before my surgery, though I think that was primarily because I had identical tumors in both breasts, and he just wanted to make absolutely sure that it hadn't spread from one to the other. It may not be needed in your case.
And -- now I'm just being nosey -- I'm confused about your surgeries: You've had a lumpectomy, and are now going back for a sentinel node biopsy? I had my lumpectomies and senteinel node biopsies all in one surgery. Just curious about that?
Traci0 -
Meeting oncologist next weekTraciInLA said:DEFINITELY celebrate the good moments!
Like talking boobies and bras with your daughters, and getting back to your exercise routine. All good!
I'm very glad to hear that you're meeting with an oncologist -- I'm a BIG proponent of talking with an oncologist as early in the process as possible. Good for you for being proactive and prepared!
I remember reading somewhere (I'm sorry I don't remember where) that chemo can cause abnormal pap results for up to 6 months afterwards -- so I would definitely put that on your list of questions for your oncologist. If you do end up needing to do chemo, she may want to address the abnormal pap result beforehand, rather than waiting and muddying up your results with chemo.
You might also just ask her if she recommends a PET scan. My oncologist ordered one before my surgery, though I think that was primarily because I had identical tumors in both breasts, and he just wanted to make absolutely sure that it hadn't spread from one to the other. It may not be needed in your case.
And -- now I'm just being nosey -- I'm confused about your surgeries: You've had a lumpectomy, and are now going back for a sentinel node biopsy? I had my lumpectomies and senteinel node biopsies all in one surgery. Just curious about that?
Traci
Traci, You are NOT being nosey!!! This whole process for me has been a ridiculous joke. No one has thought that any of these tests, biopsies, etc. would amount to anything. So to answer your question, my stereotactic biopsy in July showed Atypical Ductal Hyperplasia and radial sclerosing lesions. I was told to have an excisional biopsy on August 17 (large hematoma kept me from having it earlier) to remove the pre-cancer cells. On August 25 the surgeon said that the biopsy showed it had become invasive and was therefore considered stage one. Again, no one thought this biopsy/lumpectomy would show anything either... and here we are. The surgeon said he got everything with very clear margins and the next steps are: sentinel node biopsy (he's not expecting that to show anything ;-), meeting with oncologist, BRAC testing, radiation and tamoxifen. Obviously if this next biopsy shows something -or the BRAC test for that matter - then the game plan changes to mastectomy/chemo... Strange, huh? Each test the peson performing it has said, "We're not expecting to find anything. That would be rare." At this point, what can I do other than laugh? Cause if I don't laugh, I will cry and I don't want to do that more than I have to! :-)0 -
"We're not expecting to find anything"pitt said:Meeting oncologist next week
Traci, You are NOT being nosey!!! This whole process for me has been a ridiculous joke. No one has thought that any of these tests, biopsies, etc. would amount to anything. So to answer your question, my stereotactic biopsy in July showed Atypical Ductal Hyperplasia and radial sclerosing lesions. I was told to have an excisional biopsy on August 17 (large hematoma kept me from having it earlier) to remove the pre-cancer cells. On August 25 the surgeon said that the biopsy showed it had become invasive and was therefore considered stage one. Again, no one thought this biopsy/lumpectomy would show anything either... and here we are. The surgeon said he got everything with very clear margins and the next steps are: sentinel node biopsy (he's not expecting that to show anything ;-), meeting with oncologist, BRAC testing, radiation and tamoxifen. Obviously if this next biopsy shows something -or the BRAC test for that matter - then the game plan changes to mastectomy/chemo... Strange, huh? Each test the peson performing it has said, "We're not expecting to find anything. That would be rare." At this point, what can I do other than laugh? Cause if I don't laugh, I will cry and I don't want to do that more than I have to! :-)
Liz, Liz, Liz -- I am SO right there with you!
I'm only 40, and the masses (which, of course, turned out to be tumors) they were seeing were so darn small like yours -- so yes, all I heard through weeks of ultrasounds and biopsies was "We're sure this is nothing to worry about," "There such a small chance that this will come back positive," etc.
I DO want to reassure you, though: Eventually, once they start having actual pathology in their hands -- as they do now, from your Excisional Biopsy That Turned Into A Lumpectomy 'Cause You're Just A Big Overachiever :-), their predictions and "expectations" start to be more accurate. Before that, they're really just working with blurry pictures and statistics.
I'll keep good thoughts for your node biopsy -- mine came back free and clear, which made chemo optional for me, so I'll hope the same for you.
Traci0 -
"We're not expecting to find anything" - Part IITraciInLA said:"We're not expecting to find anything"
Liz, Liz, Liz -- I am SO right there with you!
I'm only 40, and the masses (which, of course, turned out to be tumors) they were seeing were so darn small like yours -- so yes, all I heard through weeks of ultrasounds and biopsies was "We're sure this is nothing to worry about," "There such a small chance that this will come back positive," etc.
I DO want to reassure you, though: Eventually, once they start having actual pathology in their hands -- as they do now, from your Excisional Biopsy That Turned Into A Lumpectomy 'Cause You're Just A Big Overachiever :-), their predictions and "expectations" start to be more accurate. Before that, they're really just working with blurry pictures and statistics.
I'll keep good thoughts for your node biopsy -- mine came back free and clear, which made chemo optional for me, so I'll hope the same for you.
Traci
Heard that before.....
After 1st mamo: I, too, was told to not worry too much about the small calcifications on my right breast.
After 2nd mamo: was told they were stage I and could be removed with a biopsy.
After biopsy: was told they found more stage I and I would need lumpectomy
After lumpectomy: was told they found stage III margins and mastectomy was next step
After mastectomy: I will find out tomorrow what the pathology reports show from my mastectomy.
I'm a little anxious to find out but will not be surprised by anything else at this point. I will do whatever treatments I need to in order to get through this "phase" of my life. I have cancer but cancer does not have me. :-)
Pap - I had an abnormal pap test right before I had my mamogram. If it were me I would ask the doctor about being able to get another pap test done this year to rule out any other problems. I would also have it done (and my husband would insist on it) even if my insurance didn't cover an additional pap test and I had to pay it out of pocket.
Good luck!0 -
LizWolfi said:"We're not expecting to find anything" - Part II
Heard that before.....
After 1st mamo: I, too, was told to not worry too much about the small calcifications on my right breast.
After 2nd mamo: was told they were stage I and could be removed with a biopsy.
After biopsy: was told they found more stage I and I would need lumpectomy
After lumpectomy: was told they found stage III margins and mastectomy was next step
After mastectomy: I will find out tomorrow what the pathology reports show from my mastectomy.
I'm a little anxious to find out but will not be surprised by anything else at this point. I will do whatever treatments I need to in order to get through this "phase" of my life. I have cancer but cancer does not have me. :-)
Pap - I had an abnormal pap test right before I had my mamogram. If it were me I would ask the doctor about being able to get another pap test done this year to rule out any other problems. I would also have it done (and my husband would insist on it) even if my insurance didn't cover an additional pap test and I had to pay it out of pocket.
Good luck!
First i want to tell you welcome back. I would definately want to address the abnormal pap thing. There has to be a reason it was abnormal right? I wouldnt care if it was just something simple for it being abnormal. I would do it again. The note box idea was an awesome idea that im glad you took up on. I have three children 15,13 boys and 11 year old daughter and i know it was tough to share all this stuff with them and how to go about it. My daughter took it the hardest, but is doing much better now. Im so glad you joined the board and please keep sharing. Take care of yourself.
laura0 -
Hi Liz
About abnormal pap test. I ALWAYS had abnormal pap test since I started getting them. Most times they turned out to be nothing (still makes you wonder why abnormal in the first place?). But never was I told to wait a whole year to "see". That is insane! Most insurance companies will pay for a yearly checkup for women as a preventative measure. However, if you have an abnormality, they will pay to have it looked into (which usually requires another pap smear). Most times these are done in 3 months. I did this for 20 years until I told my GYN to treat my condition, not my age. At 44 I had a hysterectomy because of fibroid tumors, precancerous cells, and I was losing my mind with all the abnormal results. Not to mention the numerous cone biopsy procedures I had done towards the end (ouch!).
Best part.....I LOVE not having periods!! Best issue I ever pushed with a Doctor! Well, I really didn't have to "push" her to do it. She told me she thought years ago I should have it done, but they are not allowed to suggest it under a certain age. But if the patient brought up the discusion....well then, it was permitted! How carzy is that? I just wanted my problem fixed once and for all.
Sometimes you have to speak up. I would insist they recheck if it has been at least 3 months. If they are not going to look into it, I would consider switching Doctors. You come first above all else including their lack of concern.
Ironically, after my hysterectomy, I always got "normal" pap smears. They called last week to tell me my last test was "normal". I couldn't help but laugh.
♥ Pammy0 -
Lymph Node BiopsyAkiss4me said:Hi Liz
About abnormal pap test. I ALWAYS had abnormal pap test since I started getting them. Most times they turned out to be nothing (still makes you wonder why abnormal in the first place?). But never was I told to wait a whole year to "see". That is insane! Most insurance companies will pay for a yearly checkup for women as a preventative measure. However, if you have an abnormality, they will pay to have it looked into (which usually requires another pap smear). Most times these are done in 3 months. I did this for 20 years until I told my GYN to treat my condition, not my age. At 44 I had a hysterectomy because of fibroid tumors, precancerous cells, and I was losing my mind with all the abnormal results. Not to mention the numerous cone biopsy procedures I had done towards the end (ouch!).
Best part.....I LOVE not having periods!! Best issue I ever pushed with a Doctor! Well, I really didn't have to "push" her to do it. She told me she thought years ago I should have it done, but they are not allowed to suggest it under a certain age. But if the patient brought up the discusion....well then, it was permitted! How carzy is that? I just wanted my problem fixed once and for all.
Sometimes you have to speak up. I would insist they recheck if it has been at least 3 months. If they are not going to look into it, I would consider switching Doctors. You come first above all else including their lack of concern.
Ironically, after my hysterectomy, I always got "normal" pap smears. They called last week to tell me my last test was "normal". I couldn't help but laugh.
♥ Pammy
You girls are great! I can identify with so many things that each and every one of you has said. :-) So here's the latest: I talked to my gyn last night. She wants to do an ultrasound to rule out fibroids and anything else. I should mention here that my mom is Stage IV LMS - which is a uterine sarcoma. That actually scares me because uterine issues run in my family and supposedly tamoxifen "feeds" uterine cancer. Going to have to talk to the onc about that next week.
The surgeon's office is getting me in for the lymph node biopsy tomorrow morning!!! At least then we will know if it has spread. I finally feel like everyone if moving at a quicker pace than before. No more "This is going to be nothing!" After 3 1/2 months I get my lymph nodes tested and will meet the oncologist to start whatever treatments. I can so do this!!!
I'll let you know how the test goes tomorrow. Thanks for the replies.0 -
Good luck!Wolfi said:"We're not expecting to find anything" - Part II
Heard that before.....
After 1st mamo: I, too, was told to not worry too much about the small calcifications on my right breast.
After 2nd mamo: was told they were stage I and could be removed with a biopsy.
After biopsy: was told they found more stage I and I would need lumpectomy
After lumpectomy: was told they found stage III margins and mastectomy was next step
After mastectomy: I will find out tomorrow what the pathology reports show from my mastectomy.
I'm a little anxious to find out but will not be surprised by anything else at this point. I will do whatever treatments I need to in order to get through this "phase" of my life. I have cancer but cancer does not have me. :-)
Pap - I had an abnormal pap test right before I had my mamogram. If it were me I would ask the doctor about being able to get another pap test done this year to rule out any other problems. I would also have it done (and my husband would insist on it) even if my insurance didn't cover an additional pap test and I had to pay it out of pocket.
Good luck!
I'm thinking about you today and hope your luck turns around. Let me know how your meeting goes. You're right to have that mantra: I have cancer but cancer doesn't have me!!! I LOVE THAT!!! It will NEVER have me either!!!0 -
Hipitt said:Lymph Node Biopsy
You girls are great! I can identify with so many things that each and every one of you has said. :-) So here's the latest: I talked to my gyn last night. She wants to do an ultrasound to rule out fibroids and anything else. I should mention here that my mom is Stage IV LMS - which is a uterine sarcoma. That actually scares me because uterine issues run in my family and supposedly tamoxifen "feeds" uterine cancer. Going to have to talk to the onc about that next week.
The surgeon's office is getting me in for the lymph node biopsy tomorrow morning!!! At least then we will know if it has spread. I finally feel like everyone if moving at a quicker pace than before. No more "This is going to be nothing!" After 3 1/2 months I get my lymph nodes tested and will meet the oncologist to start whatever treatments. I can so do this!!!
I'll let you know how the test goes tomorrow. Thanks for the replies.
I hope your lymph node biopsy turned out clean for you!
Sue0 -
Liz.. I hope everything wentpitt said:Lymph Node Biopsy
You girls are great! I can identify with so many things that each and every one of you has said. :-) So here's the latest: I talked to my gyn last night. She wants to do an ultrasound to rule out fibroids and anything else. I should mention here that my mom is Stage IV LMS - which is a uterine sarcoma. That actually scares me because uterine issues run in my family and supposedly tamoxifen "feeds" uterine cancer. Going to have to talk to the onc about that next week.
The surgeon's office is getting me in for the lymph node biopsy tomorrow morning!!! At least then we will know if it has spread. I finally feel like everyone if moving at a quicker pace than before. No more "This is going to be nothing!" After 3 1/2 months I get my lymph nodes tested and will meet the oncologist to start whatever treatments. I can so do this!!!
I'll let you know how the test goes tomorrow. Thanks for the replies.
Liz.. I hope everything went well with your lymph node biopsy today... the one thing I would ask your oncologist about is running the blood work to find out if your body will metabolize the tamoxifen ... it seems 5-7% of the population produce an enzyme that doesn't allow your body to matabolize it.. as luck would have it, I'm one of them.... I am glad that they found out now, I haven't started the hormone therapy yet and wont until I complete rads at the end of Oct. It is better than finding out 3 years from now that I endured se's from it with no benefit...
Hang in there and post to let us know how you are when you can.
Hugs,
~T0 -
LIzpitt said:Lymph Node Biopsy
You girls are great! I can identify with so many things that each and every one of you has said. :-) So here's the latest: I talked to my gyn last night. She wants to do an ultrasound to rule out fibroids and anything else. I should mention here that my mom is Stage IV LMS - which is a uterine sarcoma. That actually scares me because uterine issues run in my family and supposedly tamoxifen "feeds" uterine cancer. Going to have to talk to the onc about that next week.
The surgeon's office is getting me in for the lymph node biopsy tomorrow morning!!! At least then we will know if it has spread. I finally feel like everyone if moving at a quicker pace than before. No more "This is going to be nothing!" After 3 1/2 months I get my lymph nodes tested and will meet the oncologist to start whatever treatments. I can so do this!!!
I'll let you know how the test goes tomorrow. Thanks for the replies.
I hope everything went good with the biopsy today. Thinking of you, take care
laura0 -
Thank Ttaleena said:Liz.. I hope everything went
Liz.. I hope everything went well with your lymph node biopsy today... the one thing I would ask your oncologist about is running the blood work to find out if your body will metabolize the tamoxifen ... it seems 5-7% of the population produce an enzyme that doesn't allow your body to matabolize it.. as luck would have it, I'm one of them.... I am glad that they found out now, I haven't started the hormone therapy yet and wont until I complete rads at the end of Oct. It is better than finding out 3 years from now that I endured se's from it with no benefit...
Hang in there and post to let us know how you are when you can.
Hugs,
~T
Thats a good point, I'm starting a new question list for my Onco, because I forgot to ask so many the fist time, I'm seeing her again next week, mainly just for that.
Thanks again and God bLess,
Aurora
Oh, P.S.
Have you started Rad's yet I probably missed that post if you did, and what kinda of therapy will you do, since you can't do Tamoxifen?0 -
Good Luck Lizlolad said:LIz
I hope everything went good with the biopsy today. Thinking of you, take care
laura
Please let us know when you can, how everything went today.
I'll be praying for you.
Aurora0
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