Diagnosed 1month ago, doubts about treatment

Sarovzky · January 2017

Hello everyone!

I am Sara from Portugal. Thank you for this great community! Please, forgive my english.

I was diagnosed one mounth ago with an 2cm IDC grade 3 in my left breast, that after some more testing was found to be a triple negative.

Since my first apointment with my oncologist, not even knowing that I was a triple negative, he told me that he planned to give chemotherapy first to shrink the tumour, since my breast is quite small. It would make things easier for surgery and for myself. In the next apointment, when he told me I was a triple negative, he said that I was in a grey area, surgery first or chemo first, but since I was going to have genetic testing, and if it is positive, I will have to have a double mastectomy, plus uterus and ovaries, he still thought that the better option was to start chemo first. Then, if the genetic test is positive, I will have surgery once instead of twice. The results of the test takes 3 months. (???)

He then schedued a MRI, the instalation of the port and to mark my tumour with a metalic clip.

I had the MRI last thursday, and then friday morning when I was at the hospital to get the other stuff instaled when he called me, canceled everything, told me that after my MRI the team had seen my case again and decided for surgery first, chemo after. He said that the reason for this was that this way I woulg have just one cicle of chemo, instead of the two I would have to have the other way.

I was surprised, then scared because they found something in my right breast in the MRI, an I went for more tests(ultrasound and possibly biopsy). Thankfully it was nothing, nothing found in the ultrasound,uffff...

Anyway, I will have surgery in the first week of February, but I was very surprised and worried for the change in the treatment plan, and yesterday was an awfull day for me, the first one since my diagnosis, since I was reacting to everything so well.

So can you tell me if you find this change in the treatment plan normal?

Thank you so much in advance, and so sorry for my english and the wall of text ;P

Much love.

sunnyspot · January 2017

Hi Sara I am very sorry you are going through this. I am 3 and a half years out from treatment for stage 1 TN breast cancer in my right breast. I would ask the dr all the questions you have and tell him your concerns and make sure you are totally comfortable with the answers. You should understand him perfectly so you can feel confident in what is going to happen. If you have doubts can you go for a 2nd opinion???

marias245071 · January 2017

Hello Sara, do u speak spanish?

I get my diagnostis on 19 of november, 12 of december I know i was triple negativo, they also make another test looking for CK-5/6, ck-14, and EGRF. they result to be positive so the cancer is also BASAL-LIKE .

The K67 was 35%

They take me:

1 tac for my head

1 tac for my stomach

1 tac for my chest

1 gamagrafia osea de tres fases (Three-phase bone scan)

My tumo was 3.5 cm.

The doctor says is better begin with chimo FAC. 4 SESION, AND THEN 16 OF TAXOL.

they put me a clip in the tumor in the right breast, to know where is the tumor in case desapere with the chimo. and also put me a cateter picc in the arm.

I hope every thing goes good with u.

I have my first chimo on 26 of december and tomorrow is my second. They give in the hospital Fluoracilo and ciclosfosfato (Citoxan, Neosar, Genuxal, Citofosfana o Endoxan nitrógeno) and send me home with an infusor with doxorubicin for 24 hours.

Do u know the test and the resoults u have.

Have a nice nigth

Marias

Sarovzky · January 2017

Sunnyspot, thank you for your kind answer. I think i will ask him for a appointment to get all the answers I need.

Marias, I do not speak spanish very well, but i do undestand it easily. Thank you for your answer. I hope everything goes well with your treatments, and that you get better soon. My cancer is also basal type, ck5+, ck19+. I do not know the k67 %, I will ask the doctor. Our diagnosis are similar, except my tumour is smaller, 2 cm. Did the doctor told you the reason to start chemo first?

Thank you.

Meow13 · January 2017

Sounds like the MRI is showing the tumor to be smaller than first thought. You will know for sure after surgery.

Good luck.

Emily2008 · January 2017

Hi Sara,

So sorry about your diagnosis. It's a scary time for sure! I think it's a good thing that your doc consulted with others to reach his decision. I don't understand why you would have had to do 2 cycles of chemo. One to shrink the tumor, then another one after the surgery?

Many times people have chemo first if the tumor is very large or difficult to access. In your case, if he thinks he can get the tumor easily, then it makes sense to have the surgery first. But if you're going to have the genetic test done, shouldn't you wait to schedule the surgery? You said you're scheduled for the first week in February, but it will take 3 months to get the results? Here in the states it takes a few weeks to get the result. If there is reason to believe you have a genetic mutation, then I would want to wait for the results of the test and do the surgery based on those results.

marias245071 · January 2017

Hello, my doctor says the chemo is to get the tummor small, and also to know if the chemo is ok with my cancer. is they take out the tummor, after the chemo, they can not know if the chemo was good for my cancer, so for that they put the clip and start with the chemo.

I hope everything goes ok. Here in colombia I have two doctor, one is the cirujano and other is the hematologist.

Have a nice night

Marias

Sarovzky · January 2017

Thank you all for you answers.

Emily2008, the results for genetic mutation takes 3 months. We don´t have lab here in Portugal, so it must go abroad to be tested, hence the long wait.

The doctor inicially said that it would be better to do chemo first, while we wait for the genetic tests, then get surgery once, lumpectomy if negative, mastectomy if positive. Now says it is better to do lumpectomy first, then chemo, then mastectomy if positive for genetic mutation. I do not understand why this change all of the sudden.

Another doubt that I have, like Marias said, if they don´t do chemo first while i have the tumour, how do they know the cancer is responding to chemo ?

marias245071 · January 2017

Hello Sara, tell me the name of the test genetic they are doing to u.

I dont have them, I dont know why.

by

Marias

Sarovzky · January 2017

Hi Marias.

They call it genetic test, "teste genético" in portuguese. They are trying to find the mutation in BRCA1 or BRCA2 gene. If a woman has it, she has increased risk of having breast or ovary cancer.

marias245071 · January 2017

Hello, the doctor dont do me that test. I just arrive home from the hospital I spend there 5 hours, and send me home with the infusor with doxorubicina, for 24 hours.

I still feel good, a little tired.

I hope everythings go good with u

marias

BarredOwl · January 2017

Hi marias:

I think you are 53? You may wish to inquire about a possible referral to a genetic counselor or other medical genetics professional.

Under one of our local clinical consensus guidelines from the National Comprehensive Cancer Network (NCCN) for "Genetic/Familial High-Risk Assessment: Breast and Ovarian" (Version 1.2017), the various criteria for genetic risk evaluation include:

"An individual with a breast cancer diagnosis meeting any of the following . . .

- "Triple negative (ER-, PR-, HER2-) breast cancer diagnosed ≤60 y [years old] . . ."

- NOTE: This is not the sole basis for recommending such evaluation. Additional criteria are set forth relating to factors such as age at diagnosis, personal and family history of breast cancer or certain other types of cancers, certain ethnicities (e.g., Ashkenazi Jewish), etcetera.

In the appropriate case, following a referral to a genetic counselor or other medical genetics professional, a personal medical and family history is taken and a genetic familial risk assessment is performed, and a recommendation regarding genetic testing, the recommended scope of such testing (e.g., BRCA1 and BRCA2 only or also testing of some additional genes) is made. The pros, cons, and limitations of such testing should also be discussed. The patient may choose to elect or decline such testing.

The above guideline is available for free from NCCN, with free registration here:

https://www.nccn.org/store/login/login.aspx?ReturnURL=https://www.nccn.org/professionals/physician_gls/pdf/genetics_screening.pdf

This is a highly technical document in a specialty area. It is provided as background information only, and is not a substitute for current, case-specific, expert professional medical advice.

BarredOwl

Sarovzky · January 2017

Maria

Glad you feel good! Take care of yourself and reach me whenever you need to talk.

I am feeling better, accepting that they are doing the best for me.

A big hug.

Sara

marias245071 · January 2017

Hello all!! I just arrive from the hospital and I feel really good, and have a good lunch to. I hope this time is going to be much better than last one.

Today I talk with my job and they tell me the pay me my salary for 6 moths, and after that the one who pay me is the pension scheme because I will get pensionarion. Is the same with u there, I will receive in that time only 60% of my salary and lost the Life insurance for my job. that news make worry and really sad today.

Have all a nice day wherever u are.

Marias

aterry · January 2017

Sarvozky, have you progressed in the plan (the last one) you described? Have you gotten a second opinion? That's what I would recommend for you. I had a second opinion and decided to go with the advice of the second doctor. I don't know if it's unusual to make such big changes. I think small changes are quite common. My medical oncologist added two extra weeks of Taxol in my chemo schedule, for instance. Good luck sorting this out.

marias245071 · January 2017

Hello all, my doctor send me, estradiol test and this was hight. Anybody there do this teHello all, my doctor send me, estradiol test and this was hight. Anybody there do this test.

Marias

Sarovzky · February 2017

Hi aterry

Sorry for the late answer.

I have decided to trust my doctor and his team and go with the plan. He is consdered one of the best oncologist surgeon in Portugal.

I had surgery last monday, and I am recovering. So far, so good. I felt really well treated. I also have a beautiful pink flower shapped bandage that makes me feel pretty:)

I will begin chemo in the end of this month, acording to the plan. I had my cath-a-port instaled during surgery.This way they say I will have only one round of chemo instead of two and it is better for me.

They told me the tumor was removed easily and hopefully with clear margins (they used a radioactive dye injected in the breast to confirm it). I am waiting for the tests on the tumor and sentinel nodes biopsy

I will also likely have radio, they say, since my surgery was a breast conservative surgery, with a oncoplastic tecnic called rotation of glandular flaps.

Maria, I do not know anything about the test you talked about, sorry.

Wish you all the best.

Sara

Jan35 · February 2017

Hi

I am new to this forum and have never done anything of this nature before as my IT skills are still in the dark ages. I was diagnosed with TNBC just before Christmas and dreaded telling my family. I waited until after Christmas to tell them. I started cemo end Jan at the Christie. I have a large tumor and the cemo is to shrink it before surgery. I am on EC treatment for 9 weeks and then it will be reviewed with a view to going onto another treatment, weekly for 9 weeks. I have also been sent to the generic clinic for tests which I am glad of because if I have the defective gene at least future generations of my family may be given options. I am nervous but positive as the biopsy of the lymph nodes was negative. Although the wait between diagnosis and starting cemo was worrying because I am sure the tumor had grown. What's to say that it had not spread in between the biopsy in Dec to starting treatment late Jan. I am in my first cycle of cemo and no side effects as yet. I have been told best to have results re genetic test before surgery to prevent the need for two operations, if required. I am not going to genetic clinic until end of March therefore highly likely will not get result until cemo almost finished. The staff at the Christie have been great and have not hidden anything and have talked me through every step that I will be taking which has given me confidence in the treatment planned for me.

Jan35

Moderators · February 2017

Jan35-

Welcome to BCO! We hope you find these boards to be a source of information and support as you move through your treatment; you're in the right place, and definitely not alone!

The Mods

Reina_de_los_changos · February 2017

Hi Sara,

I'm sorry to hear about your situation and hope you are doing okay. Just want you to know that I was also Stage 2B, triple negative. My doctors suggested surgery first and then chemo. I'm almost done with chemo now. I'm glad I listened to them.

Take care

Hydrangia · March 2017

hello.. I am diagnosed triple neg, grade 3, stage 2, and I have a tentative surg date for bilateral mastectomy, it was my choice to go that route. Drs did say I could do lumpectomy.. but decided to try to be proactive. I hv met with plastic surg fr expander/implants which she highly recommends over diep flap, because of less time fr recovery and according to her less chance of future problems if flap didn't take. I really had my mind set on a diep flap and am still meeting with this surg who does them this Monday. My drs feel that because I hv to undergo chemo after that by doing flap ...my body wouldn't be in the best of shape to do the chemo...I am in perfect health except fr this damn cancer....I sooooo confused..I don't like idea of something foreign in my body and I know their can be issues also with implants if radiation gets added etc... I would rather go fr tougher recovery upfront than go through a year of getting pumped up to receive final implant...any input?? I am a newbie here about to undergo my journey...

Diagnosed 1month ago, doubts about treatment

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