the doctors lied! what to do......

Your mom needn't lose all
Your mom needn't lose all hope and neither should you! All the unknowns at the beginning of this ride make us a little crazy. But it is good that the second chemo worked, if only a little. There are still treatment options. I was staged at Stage 3a, not far off from your mom. That was three and half years ago.

What a wonderful daughter you are, to be so involved. Please stay positive for your mom. It will help her battle. xoxoxoxo Lynn

the daughter said:

Thank you so much. YOur
Thank you so much. YOur kind words mean so much to me. Are you still in treatments? I guess my mom and all of us were under the impression that after srugery- she would be cured...

you are in my prayers....
I am so sorry that you received this news. Please do not give up hope. Many survivors here have received not so favorable results such as yours and they are still here. All I can say is fight it! Fight it with every tool and treatment. There is always hope, if you try. Surgery is just one step in the treatment. I had 6 surgeries - back to back. It left me worn out...now I am on to chemotherapy and radiation and it's quite a schedule. No guarantees or cure for me...I just gotta do it for my best shot.

If you want to live, you gotta do what you gotta do. If you aren't satisfied with your doctors diagnosis, find another. A second opinion might give you a different thought. I wish you and your Mom hope and comfort. Breast cancer is our beast and we must fight it and prevail!!!

Hugs, pp

There are no easy answers with CA
If one chemo doesn't work, there are others to try. That is one of the good things about this. Every cancer is different. My oncologist did chemo first and then surgery as a way to check that the chemo was working.
I think checking at MD Anderson is probably a good idea. That is one of the best facilities in the country. I am sure your oncologist will not mind.
People can turn things around still at Stage 3B, there are women on this board with Stage 4. This is a great place to get encouragement, information and prayers!
All the best,
Cindy

If your Mom is IBC then
If your Mom is IBC then chemo first is the standard protocol as it does not present itself in a lump but rather it spreads in bands or nests. Chemo is done before surgery so that it can be shrunk into a 'lump; and get margins (edges) so that it can be gotten out. In my case I did 4 A/C 2 weeks apart before surgery - did get shrinkage and good margins - then 12 weekly taxol after surgery followed by radiation. It's been 1 1/2 yrs since last radiation and I'm doing great. Earlier surgery is not usually an option with this type because of the way it spreads.

When your Mom sees him, be sure to be there to get your questions answered or give him a call. A secnd opinion might be in order. I never got a second opinion as I had great confidence in all my Drs but if any one of them had said or inferred that I'd be 'cured' of cancer I would have RUN away from them. There is no cure at this time for cancer - we can get NED (No Evidence of Disease) but that isn't the same as "cured".

If you fill out your profile with info about your Mom it would be easier for those with the same DX fo give you ideas/info. If she is HER2+, she will most likely be on Herceptin infusions for a year, if she's ER+ she'll most likely be on a estrogen blocker for 5 years.

Talk with her Dr with her present.

There is no reason for her to give up hope - here are many who live long life's even if they are Stage IV (mets).

Prayers!

Susan

Rague said:

If your Mom is IBC then
If your Mom is IBC then chemo first is the standard protocol as it does not present itself in a lump but rather it spreads in bands or nests. Chemo is done before surgery so that it can be shrunk into a 'lump; and get margins (edges) so that it can be gotten out. In my case I did 4 A/C 2 weeks apart before surgery - did get shrinkage and good margins - then 12 weekly taxol after surgery followed by radiation. It's been 1 1/2 yrs since last radiation and I'm doing great. Earlier surgery is not usually an option with this type because of the way it spreads.

When your Mom sees him, be sure to be there to get your questions answered or give him a call. A secnd opinion might be in order. I never got a second opinion as I had great confidence in all my Drs but if any one of them had said or inferred that I'd be 'cured' of cancer I would have RUN away from them. There is no cure at this time for cancer - we can get NED (No Evidence of Disease) but that isn't the same as "cured".

If you fill out your profile with info about your Mom it would be easier for those with the same DX fo give you ideas/info. If she is HER2+, she will most likely be on Herceptin infusions for a year, if she's ER+ she'll most likely be on a estrogen blocker for 5 years.

Talk with her Dr with her present.

There is no reason for her to give up hope - here are many who live long life's even if they are Stage IV (mets).

Prayers!

Susan

I was
I was 3a, with a 6.5cm tumor. That was a little over two years ago. I had a lumpectomy 2/14 nodes positive, did chemo, rads and I'm now taking my little white pill for the next 3 1/2 years, but I feel fine. I truly feel in my heart that it's gone and I'm going to live to be a really really cranky old broad (sorry). I was diagnosed at 55.

There's no reason for your mother or anyone else to give up. If you're not happy with the treatment she's received, please find another oncologist.

There are so many wonderful ladies on this board who are stage 4 and going strong.

Remember, the numbers they give you are just that, numbers. Statistics are not people.

Best wishes and sending prayers and angels.

marge

carkris said:

Just my humble opinion, but
Just my humble opinion, but if I was getting conflicting info, i would get a second opinion
MD Anderson is a great place. Dont lose hope many women do well and so can your mom. HUGS

I would not go as far as to say, that the Doctor lied ...
however, there is always a 'misinterpretation' or mis-guidance here. You state that your Mother is a young age of 52, therefore, I assume you are in early to mid 20's -- so as much as your Mother may be going thru -- you as well, are riding this roller coaster so many of us WARRIORS speak of .. confusing information, jardon that we are not familiar with, appointments with multiple doctors, centers and Hospitals. It is all so overwhelming, and confusing -- so much so, that you feel that you are living in a alternate universe.

**Move her .. to MD Anderson, and quick***

Our family, friends, co-workers and neighbors go on with their lives . . . working, planing vacations, new births and celebrations of birthday's, and life. Here we stand .. still, confused, bewildered about our longevity = future. The only thing keeping any of us from going off the deep end, is the fact that we have another appointment or scan -- along with the hopes that our latest venture will provide us with some clarification, or information that will help put our lives back together and answers.

I hope and pray that you have someone to accompany you and your mom to all of these appointments - otherwise, I think it imperative to take a tape recorder with your to all your appointments -- to play back conversations taken place at each and every 1 of your Mom's doctors appointment.

I dared to ask, why me -- then my heart sank .. why would I ever put this horrible disease on any other women. So I stepped up to the plate -- putting 1 foot in front of the other -- when on to find a Breast Cancer Specialist, 2nd opinion .. and decided what I was going to do to rid my body of breast cancer. Researched, read everything regarding your Mom's particular breast cancer -- and ask question after question, until you fully understand what is going on with Mom.

Please check with the ACS .. here and inquire if maybe there is a Spanish version available, or support center near Mom.

I would also talk to the Social care specialist at your Oncology Center -- about Spanish support groups meeting in your local area. You Mom may need to speak with other Women in her situation --

Good luck,

Vicki Sam

VickiSam said:

I would not go as far as to say, that the Doctor lied ...
however, there is always a 'misinterpretation' or mis-guidance here. You state that your Mother is a young age of 52, therefore, I assume you are in early to mid 20's -- so as much as your Mother may be going thru -- you as well, are riding this roller coaster so many of us WARRIORS speak of .. confusing information, jardon that we are not familiar with, appointments with multiple doctors, centers and Hospitals. It is all so overwhelming, and confusing -- so much so, that you feel that you are living in a alternate universe.

**Move her .. to MD Anderson, and quick***

Our family, friends, co-workers and neighbors go on with their lives . . . working, planing vacations, new births and celebrations of birthday's, and life. Here we stand .. still, confused, bewildered about our longevity = future. The only thing keeping any of us from going off the deep end, is the fact that we have another appointment or scan -- along with the hopes that our latest venture will provide us with some clarification, or information that will help put our lives back together and answers.

I hope and pray that you have someone to accompany you and your mom to all of these appointments - otherwise, I think it imperative to take a tape recorder with your to all your appointments -- to play back conversations taken place at each and every 1 of your Mom's doctors appointment.

I dared to ask, why me -- then my heart sank .. why would I ever put this horrible disease on any other women. So I stepped up to the plate -- putting 1 foot in front of the other -- when on to find a Breast Cancer Specialist, 2nd opinion .. and decided what I was going to do to rid my body of breast cancer. Researched, read everything regarding your Mom's particular breast cancer -- and ask question after question, until you fully understand what is going on with Mom.

Please check with the ACS .. here and inquire if maybe there is a Spanish version available, or support center near Mom.

I would also talk to the Social care specialist at your Oncology Center -- about Spanish support groups meeting in your local area. You Mom may need to speak with other Women in her situation --

Good luck,

Vicki Sam

There is plenty of hope
and it's time for a second opinion. Stupid cancer and how our individual bodies handle it are both unpredictable. It sounds like the initial protocol your mom was on is what many women start out with when the tumor is a certain size. Unfortunately some women don't respond as expected and the final pathology is never known until after surgery for any of us.

I think it is an excellent idea to have her evaluated at MD Anderson if you can. At a large center like MDA there should be iterpreters available from the getgo. Be sure to let them know when you make the appointment that you'll need one. Take notes - and take someone with you. They're big - they're at the cutting edge of what's new and what to do when a cancer turns out not to be routine.

Best of luck to you and your mom. Of course you're upset. No one is prepared for this, but please don't dispair. Do your research. Learn, learn, learn and be an advocate for your mom. We're all here for you as you go along on this journey.

Suzanne

the daughter said:

Thank you so much. YOur
Thank you so much. YOur kind words mean so much to me. Are you still in treatments? I guess my mom and all of us were under the impression that after srugery- she would be cured...

You and your Mom are in my
You and your Mom are in my prayers!


Hugs, Diane

camul said:

Hi Daughter
I was 52 last year when I was diagnosed with Stage IV. I am still here, and with the last scans it is in my bones and skin, and i have new scans next week. Want your mom to know that even with stage iv, I am still living. I have had long months of chemo, but I look at my family and know that I can do the chemo, at least until I know that it isnt working, and even then we will look for another chemo.

Best of luck for both you and mama, she is lucky to have you for support. But regardless of the diagnosis, the treatments are doable.

Prayers nad hugs,
Carol

Hang in there!
Your mom hasn't lost yet and you're on her team fighting all the way. Get those other opinions and ask about tests. And try to focus on the positive as much as you can. You've already heard from some on this board who have faced similar trial and/or are stage 4. This can all be pretty overwhelming right now but there's lots of help out there and on here. Your mom needs you as an advocate and a cheerleader so put on your pink boxing gloves and join the fight. Sending prayers for both you and your mom! And {{{{{{{{cyber hugs}}}}}}}}.

CypressCynthia said:

Don't give up!
Coincidentally, I am sitting here with my original biopsy from 1987 (very yellowed with age) on my lap having just finally located it to send to MD Anderson: 2.8X1.4 cm IDC in superior quadrant; a smaller IDC 1.5 cm inferior to above; multiple small foci of IDC in random areas of the breast and, not to be forgotten, a single focus IDC involving the dermis of the nipple. Everywhere else was atypical intraductal hyperplasia. Also 4 of 23 nodes with cancer.

Anotherwords, my whole breast was one big mess. My physician at the time said it looked like the IDC had started behind my nipple and then just spread out everywhere like a spider. No lumpectomy was ever offered to me because no way it would be cosmetic according to my docs at the time.

I am telling you all this because, even though everyone was really negative when I was diagnosed, I am still here! It has been 24 years! You did not read that wrong.

Never give up and I recommend everyone doing what I did which is respectfully listening to the awful news and then just go on living your life as fully as possible.

My cancer did metastasize to my ribs a couple of years ago, but I am not surrendering. Take that cancer! Tell your mom to fight on. I do not know her type of cancer or anything about her particular disease, but I do know that I probably shouldn't be here but I am. My prayers are with you both and I know she is blessed to have you with her.

Oh, when in doubt, and if it is doable, a second opinion is never a bad idea. I still love my oncologist, but I want MD Anderson to take a look because I don't want to leave any stone unturned.

it's so frustrating when the chemo does not work
as expected and hoped. I did 6 months of chemo and then came out of surgery with clean margins but a lot of disease still in the lymph nodes. I will now go on to do radiation with more chemotherapy (oral, Xeloda). When I got the news from my pathology report, I also had that feeling of betrayal like I did everything the doctors told me too and the chemo did not work. As if they had lied to me. It took me a month of crying and screaming to accept the results were not what any of us (including my doctor) would have liked to see, and to gather the strength to move on to the next phase of treatment. I am scheduled to start the new oral chemotherapy with 28 radiations on Monday. I am phase IIIC. Hearing from other women on this board inspires me not to give up hope, there are still many options.

I am not sure if you mentioned that your mom has inflammatory breast cancer or some other type? If it is inflammatory I would agree with others to get a second opinion at MD Anderson. I go to Fox Chase Cancer Center here in Philadelphia (we live in Virginia and drive 3 hours to get there) since there is a doctor there, Dr. Christafennelli, who is an expert in IBC. He is originally from MD Anderson.

Best of luck to you and your mom. She is blessed to have such a loving and caring daughter!

Laura