My appointment to oncologist Wednesday.

Lisaepstein

MAJW said:

Wait a year?????
Wait a year to start radiation?????? This takes the cake! And yes we do understand the size....again, I ask....how was this " tiny" tumor found? You've never answered this... And exactly what type of cancer is he trying to prevent with an estrogen blocker...you've stated you had "uterus" cancer so it can't be for that....more confused than ever....

I had a mammography thats
I had a mammography thats how he found this tiny tiny tumor!!! He was a great radiologist that found this tiny tiny tumor. I was told usually they don't find them if they are less than 5mm! My doctor is trying to block another breast cancer from coming because maybe the next one will be estrogen related. Are you a doctor? By the way even if you don't have ovaries you body still produces estrogen.

MAJW

Lisaepstein said:

I had a mammography thats
I had a mammography thats how he found this tiny tiny tumor!!! He was a great radiologist that found this tiny tiny tumor. I was told usually they don't find them if they are less than 5mm! My doctor is trying to block another breast cancer from coming because maybe the next one will be estrogen related. Are you a doctor? By the way even if you don't have ovaries you body still produces estrogen.

Not a Physician...
But I know more about breast cancer than I ever wanted to know! And yes even without ovaries the body still produces estrogen....your oncologist must be extraordinary!!! Because the things you say he has proposed to you, I and many others on this board, have NEVER heard of....maybe we all should try to get an appointment with him....There are women on this board who are facing a third recurrence...never heard of the things this guy has told you....like you could wait a year for radiation????????? And I hate to say it but if you have a recurrence, it will most likely be triple negative...and it doesn't always come back in the breast....it can come back in many, many parts of the body...including vital organs...and all the estrogen blockers in the world won't stop it.... Pardon me if I'm skeptical.....

Rague

Lisaepstein said:

So confused
Suzanne I am so confused by everything!! When I first had my biopsy before surgery I was er+. I had my surgery and the results changed. Now I am triple negative!!! Went to my oncologist who I believe is a great doctor I know many who have gone to him. He told me because the tumor was so so small 2.1mm that I would not need chemo. I will had radiation, BRCA test and he put me on an anti estrogen pill not for this cancer but to pervent any others. Every on here keeps sending me messages how TNC is very aggressive and they cant believe no chemo. This has me so worried!! I called the cancer hot line and spoke to a oncologist nurse and she told me my tumor is smaller than small and she read me a paragraph that says it the tumor is less than 6mm than no chemo.If it was 6mm or higher they would consider it!!! I even questioned him again and he said it is a dangerous cancers but because of the size there is a very high cure rate and i am in remission. He actually enters information in his computer and it states that if I wanted I could wait a year before I start radiation. Which I will not do!!! Maybe other women on here dont really understand how small 2.1mm really is. Any suggestions?

Wait a YEAR
For radiationM WHY would you bother doing it that long? Radiation is to kill any stray cancer cells in the breast area that were not taken care of by chemo and surgery. So this "DR" says to just wait and let them grow if any were left but wants to 'treat' something that has not existed? Bizarre!

You still haven't said what TYPE breast cancer - Ductal Carcenoma In Situ (DCIS), Lobular Carcenoma In Situ (LCIS), Invasive Ductal Carcenoma (IDC), Invasive Lobular Carcenoma (ILC), or Inflammatory Breast Cancer (IBC). Being TN or ER+/PR+/HER2+ is important but that only goes along with the TYPE as they all have different stats and prognosis. The worst is to be TN IBC as IBC is the most aggressive. (and rarest - only between 1 % and 5% of all breast cancers) form. We have several TN IBCers here.

Definately a 'second' opinion would be in order to get some stright info.

Lisaepstein

Rague said:

Wait a YEAR
For radiationM WHY would you bother doing it that long? Radiation is to kill any stray cancer cells in the breast area that were not taken care of by chemo and surgery. So this "DR" says to just wait and let them grow if any were left but wants to 'treat' something that has not existed? Bizarre!

You still haven't said what TYPE breast cancer - Ductal Carcenoma In Situ (DCIS), Lobular Carcenoma In Situ (LCIS), Invasive Ductal Carcenoma (IDC), Invasive Lobular Carcenoma (ILC), or Inflammatory Breast Cancer (IBC). Being TN or ER+/PR+/HER2+ is important but that only goes along with the TYPE as they all have different stats and prognosis. The worst is to be TN IBC as IBC is the most aggressive. (and rarest - only between 1 % and 5% of all breast cancers) form. We have several TN IBCers here.

Definately a 'second' opinion would be in order to get some stright info.

i am Infiltrating Ductal
i am Infiltrating Ductal Carcinoma TN. I am starting radiation next month and I am having the BRCA1 and 2 test next week. If the test comes back positive then treatment might change, but because of the tiny tiny size 2.1MM I was told by many doctors that I will not need Chemo. Thank god they caught it early!!! May we all on here have a happy and healthy new year!!!
By the way what state do you guys live in?

Double Whammy

Lisaepstein said:

i am Infiltrating Ductal
i am Infiltrating Ductal Carcinoma TN. I am starting radiation next month and I am having the BRCA1 and 2 test next week. If the test comes back positive then treatment might change, but because of the tiny tiny size 2.1MM I was told by many doctors that I will not need Chemo. Thank god they caught it early!!! May we all on here have a happy and healthy new year!!!
By the way what state do you guys live in?

Ahem
Dang! I thought I just posted this information! I'm getting disappearing posts. Sorry if it ends up showing up and this is redundant, but it does clarify one issue.

There are Guidelines for Patients on the NCCN Site. Here's the one for breast cancer. http://www.nccn.org/patients/patient_guidelines/breast/index.html#/1/ It's very good. Apparently size does matter for triple negative (check page 70 and 71). This surprised me, but I don't think anyone on here has had such a teeny tumor. I, too, thought chemo was a given if triple negative. Apparently not.

However, knowing what I know about how aggressive triple negative tumors can be, I think I'd still want a second opinion and some clarification about why your cancer was first thought to be ER+ and what made the concensus change? Do you have copies of your pathology reports (from biopsy and from surgery).

Lisa, you are without a doubt a very lucky woman, in both your endometrial cancer and your breast cancer diagnoses.

That's all I have to add, folks.

Suzanne
(California)

Lisaepstein

Double Whammy said:

Ahem
Dang! I thought I just posted this information! I'm getting disappearing posts. Sorry if it ends up showing up and this is redundant, but it does clarify one issue.

There are Guidelines for Patients on the NCCN Site. Here's the one for breast cancer. http://www.nccn.org/patients/patient_guidelines/breast/index.html#/1/ It's very good. Apparently size does matter for triple negative (check page 70 and 71). This surprised me, but I don't think anyone on here has had such a teeny tumor. I, too, thought chemo was a given if triple negative. Apparently not.

However, knowing what I know about how aggressive triple negative tumors can be, I think I'd still want a second opinion and some clarification about why your cancer was first thought to be ER+ and what made the concensus change? Do you have copies of your pathology reports (from biopsy and from surgery).

Lisa, you are without a doubt a very lucky woman, in both your endometrial cancer and your breast cancer diagnoses.

That's all I have to add, folks.

Suzanne
(California)

Thanks
Thanks Suzanne I am glad I am getting through to someone on here. I do have both reports and my doctor said when you do a biopsy they take very little so sometimes when they have more readings may change. I am going to check out this site, thanks! I know my doctor knows his stuff he is a very good doctor and is very highly recommended. He did not tell me to wait a year for radiation he just told me when he puts numbers in the computer it gives him the treatment that is required for my cancer. It stated if I wanted I could wait a year but did not tell me to. My doctors wants me to start radiation after the results of the BRCA results comes back which will be in a month from now. It doesn't matter if your TN or ER+ all cancers can come back. TN just means that estrogen did not cause it who knows what did like any other cancer. The Her2- is good the size is good and there was no spread. I think the more I go on the computer the more I get scared!!!!

Rague

Lisaepstein said:

i am Infiltrating Ductal
i am Infiltrating Ductal Carcinoma TN. I am starting radiation next month and I am having the BRCA1 and 2 test next week. If the test comes back positive then treatment might change, but because of the tiny tiny size 2.1MM I was told by many doctors that I will not need Chemo. Thank god they caught it early!!! May we all on here have a happy and healthy new year!!!
By the way what state do you guys live in?

IDC
Inflitrating Ductal Carcinoma is another term some use for Invasive Ductal Carcinoma. The most common form.

For what it's worth, I'm in South Dakota.

Lisaepstein

Rague said:

IDC
Inflitrating Ductal Carcinoma is another term some use for Invasive Ductal Carcinoma. The most common form.

For what it's worth, I'm in South Dakota.

I actually went on a site
I actually went on a site that Suzanne was nice enough to tell me about nccn.org guidelines/breast/index page 70 and 71 explain and actually says the way my doctor is treating me is the right treatment for me. No chemo. It is a great little book try to read it if you already haven't. I never asked you Rague what type of breast cancer do you have? How many years and how are you doing? All this **** is just so scarey, why do we have to go through this and constantly worry if the cancer will come back. I had uterus and now breast two different cancers although caught early I always am asking myself WHY? Be well!

Rague

Lisaepstein said:

I actually went on a site
I actually went on a site that Suzanne was nice enough to tell me about nccn.org guidelines/breast/index page 70 and 71 explain and actually says the way my doctor is treating me is the right treatment for me. No chemo. It is a great little book try to read it if you already haven't. I never asked you Rague what type of breast cancer do you have? How many years and how are you doing? All this **** is just so scarey, why do we have to go through this and constantly worry if the cancer will come back. I had uterus and now breast two different cancers although caught early I always am asking myself WHY? Be well!

IBC
Inflammatory Breast Cancer - the most aggressive and deadliest form. Within days, it can go from not there to Stage IV. Only between1% and 5% of all breast cancers are IBC, the odds of making it to 5 years are 1 out of 4 DX'd.

I'm doing GREAT - I'm alive and do anything I want to! I was DX'd in early Aug 2009. Saw my PA at 11, was at Radiology at 1 for a mammo, followed immediately by a sono and biospy. Had path. report the next morning . Saw Surgeon on Monday, Rads Dr on Wed, Chemo Dr on Thurs and started a bunch of scans. Aug 25, my port was put in (still have it) and the next day started 4 A/C every 2 weeks. 2 weeks after last A/C, I had a mod. rad. mast. 3 weeks after surgery I started 12 weekly Taxol. A week after last Taxol, I started 25 rads. A week after I started rads I started Femara. I developed a large seroma from surgery, I burned very bad after rads. - have a lot of scars to prove it. Other issues that weren't there before IBC are I now have gall stones, arthritis in back is worse, osteoporosis, thyroid doesn't work good, hypoglycemic, and have cataracts (surgery next month). Not to forget big issues with lymphedema. You asked - giving you answers. Any other questions? (I'm ER+, PR-, HER2-)

Hey - I'm alive and riding NED (No Evidence of Disease). Do anything I want to so that is all that's important to me.

Susan

If you click on someone's name there is a profile available if they have filled it out - I need to update mine. Have you filled yours out? It can help when replying to see info.

Lisaepstein

Rague said:

IBC
Inflammatory Breast Cancer - the most aggressive and deadliest form. Within days, it can go from not there to Stage IV. Only between1% and 5% of all breast cancers are IBC, the odds of making it to 5 years are 1 out of 4 DX'd.

I'm doing GREAT - I'm alive and do anything I want to! I was DX'd in early Aug 2009. Saw my PA at 11, was at Radiology at 1 for a mammo, followed immediately by a sono and biospy. Had path. report the next morning . Saw Surgeon on Monday, Rads Dr on Wed, Chemo Dr on Thurs and started a bunch of scans. Aug 25, my port was put in (still have it) and the next day started 4 A/C every 2 weeks. 2 weeks after last A/C, I had a mod. rad. mast. 3 weeks after surgery I started 12 weekly Taxol. A week after last Taxol, I started 25 rads. A week after I started rads I started Femara. I developed a large seroma from surgery, I burned very bad after rads. - have a lot of scars to prove it. Other issues that weren't there before IBC are I now have gall stones, arthritis in back is worse, osteoporosis, thyroid doesn't work good, hypoglycemic, and have cataracts (surgery next month). Not to forget big issues with lymphedema. You asked - giving you answers. Any other questions? (I'm ER+, PR-, HER2-)

Hey - I'm alive and riding NED (No Evidence of Disease). Do anything I want to so that is all that's important to me.

Susan

If you click on someone's name there is a profile available if they have filled it out - I need to update mine. Have you filled yours out? It can help when replying to see info.

Sorry to hear all that and
Sorry to hear all that and wish you only the best. Hope we all have a better year and let's enjoy every day ahead!

survivorbc09

Lisaepstein said:

I actually went on a site
I actually went on a site that Suzanne was nice enough to tell me about nccn.org guidelines/breast/index page 70 and 71 explain and actually says the way my doctor is treating me is the right treatment for me. No chemo. It is a great little book try to read it if you already haven't. I never asked you Rague what type of breast cancer do you have? How many years and how are you doing? All this **** is just so scarey, why do we have to go through this and constantly worry if the cancer will come back. I had uterus and now breast two different cancers although caught early I always am asking myself WHY? Be well!

I was confused by a lot of
I was confused by a lot of the info on this thread too, until Suzanne posted what she did. That cleared it all up. I wish you the best Lisaepstein. I am just sorry that you had to come on the bc board at all.


Hugs, Jan