Scared and Frustrated!

seawee34

I was just diagnosed Oct. 26, 2011 with TNBC stage 2 at almost 3cm and I am scared.  I have been told that I am seeing the best surgeon in Northern California but I feel that she is not keeping me informed.  I am 45 yrs old and had my first mamogram in Jan. 2011 and it showed suspicous on both breasts.  I had an ultrasound in March and then they wanted an MRI but my insurance refused because the order stated that it was suspicous but probably benine (?) so I did not think anything of it since the insurance did not think it urgent.  Went back in for ultrasound in early Oct. and a core biopsey Oct. 25th and the dreaded phone call on Oct. 26th that it was possitive.  My nuclear bone scan and chest ex-ray came up clear but the MRI shows more.  They are sending me to have a second read ultrasound and more biopsies if needed this week.  On Oct. 26th my surgeon gave me my options and last week my husband and I went back in and told her that after doing research we had decided on double mastectomy and she said no, she wants to do a lumpectomy. I told her that I am real scared that it will return but she did not really say much.  Why give me options if she was going to do what she wanted anyway?  I did the genetic test because we have two daughters and grandkids but will have to wait awhile for the results.  She then tells me that if the genetic test comes up positive that I will have to go and have my ovary (the only one I have left do to fibroidal tumors at 25) taken out.  I asked her what else should we expect after surgery and all she said was I would have to go see an oncologist.  She never said chemo, I found that out from all my research.  I am glad that I found this site and have read so many of the posts.  I am scared and frustrated!!!!  I see her again on Wed.the 9th and have surgery scheduled depending on the second read ultrasound on the 15th of this month.  I would like to know what other questions I should ask her, can anyone help me with that?  Thank you for listening to me babble on and on. 

Kathy9433

Hi Seawea,  Your story sounds SO familiar!  I have a similar diagnosis and just went through what you are now going through.  The waiting and not knowing is SO HARD.  I was scheduled for double mastectomy and removal of ovaries, too, but it all depended on my genetic testing.  Results came back 3 days before surgery, BRCA negative (yay!), so I had lumpectomy and sentinel node biopsy.  My surgeon explained that with chemo and radiation such a radical procedure was not necessary.  Nodes were clear but the margins of lumpectomy did show some "spots".  She sent me to the oncologist and my treatment will be chemo, then radiation.  The chemo is 8 treatments (4 adriamycin & Cytoxan and 4 Taxotere) once every three weeks.  Then 5 weeks of radiation (5 days a week).  Had my first chemo two weeks ago (noticed some hair loss today :O(....right on schedule!)  From diagnosis to surgery to beginning of treatment has taken about 3 months so your Drs. seem to be moving a little faster than mine did!  But like I said before, the waiting is the most stressful of all.  Hang in there and try and stay positive.  This site is great for getting honest answers from women who have "been there".  It has helped me a lot.  You'll get through this, just take one day at a time.  (I know, easier said than done!)  XOXOXO

Kathy

    

belleeast

i would get a second opinion, if you are not happy with your surgeon, a lot of people do.

 she works for you and should respect your decision. it doesn't sound like she is listening to you about your concerns and fears. maybe get an opinion from another dr that uses the team approach who coordinate with the medical onocologist, radiology onocologist,etc.

you are going thru a hard time it doesn't help if you don't have trust and confidence in your dr. if the brca comes back positive they usually recommend a double masectomy and having your ovaries removed. i am waiting for my test results, my MO has already told me if it is positive that is what i should do. sending you positive thoughts,one thing i've learned is you have to be your best advocate.

Luah

Your BS may have some very good reasons for recommending a Lx in your situation, but he/she should explain them to you clearly and completely. (For example Lx and rads have been shown to be equivalent to Mx.) As you probably know, surgeons are typically not the best at bedside manner, but rationalizing a procedure would seem to me to be a minimum job requirement! Probe, challenge... and get another BS is that's what it takes to get answers. As for additional treatment, that plan gets put together by your medical oncologist, based on your final surgical pathology.  If you are in fact TN with an almost 3 cm tumour, then chemo is in the cards, yes, but your BS may be taking one step at a time. 

belleeast

bump

seawee34

Thank you to all of you for your comments.  I just had more biopsies done today on both breasts and so I am pretty sore.  I have to travel 3 hrs one way for my treatment because we live in a small town but I have family that I can stay with once I start my chemo.  I pray a lot and the feeling that I keep getting is to trust in my doctors, they know more than I do...lol.  I will find out Wed. what the results are on the biopsies.

belleeast

hope you have good news from your biopsies. get some rest and take it easy the next few days if you can. one step at a time is all we can do.

lyndawatkins

 I was diagnosed with TNBC stage 3 c in my right breast in 2009.  I had chemo which did not work. Then a mestectomy followed by radiation, only to be told that I still have cancer.  I had passed my 2 year mark without signs of it metasticizing until now. My Drs are requiring a Pet scan and now I am battling my insurance to get the test.  I am having pain and lumps recently reappeared in the cancer area.  My insurance is refusing to allow the test to be conducted.  I am scared, of course.  Anyhow, my message to you is fight for your life.  ASK questions of your doctor and fight your insurance if you have to in order to get the test that are necessary.  We only have one chance at this because if they are wrong, we are the ones that lose not them. We can not afford an oops or sorry.  This stuff is nasty and non-discriminating. It does not recognize time nor policies. I know because I am fighting for my life and the Drs and insurance are looking at this as another statistic.  Ask your questions, seek answers and don't hestitate to question when you don't agree or understand. Good luck

mags20487

I agree that a second opinion is probably in order.  You must feel comfortable with your doctor who is obligated to listen to your fears and concerns as well as answer your questions.  If the other spots that you have had biopsied come back cancer then you may have to get  a mastectomy and not just lumpectomy.  Either way the choice should be yours.  If you are BRCA+ then mastectomy is usually recommended as well.  I have had to fight with the insurance on many things so far but have not let it stop me from getting the treatment I need.  I have gotten some things done without knowing if insurance will cover it just because I wanted my treatment to move forward and figured if it was not covered then I would deal with that later.  First priority is getting healthy.  Stay positive and hoping your biopsies come back B9 for the rest.

Maggie

epgnyc

Hi, Seawea.  Sorry you have joined our TNBC group, but it's a great bunch of women here.  I so relate to your scared feelings upon being diagnosed.  I was a mess, but it gets much better. Because you don't sound sure whether you should have a lumpectomy or mastectomy, I agree with others here that getting a 2nd opinion would be very helpful.  I have now had TNBC twice in the same breast over a period of 9 years.  I was diagnosed for the 2nd time this year with Stage 2, 4 cm. tumor and finished treatment in late August.  The first time, I had a 1.7 cm. tumor and had a lumpectomy, chemo and radiation.  This time I elected to have a double mastectomy (one necessary and one prophylactic).  The cancer grew back in exactly the same place as the first breast cancer and of course I was second guessing myself that I should have had a mastectomy the first time.  But we can only go with the information we have at the time.  I understand your concern though because you are having issues with both breasts.  That's basically why I chose to have both removed, because I've also had to have biopsies previously in the "good" breast.  If you have strong feelings about having mastectomies, stick to your guns.  It's easy for the surgeons to say "this is just as good" but you are the one that's going to have to live with the uncertainty and consequences.  Good luck to you whatever your decision.  And do come back and let us know how you're doing and what's happening. 

Luah

I thought if cancer recurred in the same breast after a Lx, you would have to go with a Mx, as radiation cannot be done twice to same area. Correct me if I'm wrong on that.  

belleeast

luah, that's my understanding,too. at least that's what my surgeon said.

rachelvk

Seawee - Sorry you have to be here, but you've found a great resource to answer a lot of your questions. I also agree with others about a 2nd or 3rd opinion - it sounds like your options are limited because you're in a small town, but check around and you may find something. I had 3 opinions - in my case, they all said the same thing and I agreed with the course of action (bmx - I'm brca positive, sigh), but I wanted a breast surgeon and plastic surgeon team I felt comfortable with.

 

The waiting IS scary. I was dx'd in August (found the lump mid-July) and didn't have surgery until Oct 26 and was freaking, but I was constantly told, even being TN and grade 3, that cancer is still slow-moving enough that outcomes generally don't change within a three-month range. Read up, find a doctor who you feel comfortable with (they may still tell you things you don't want to agree with, but if you trust them and their expertise, that's what counts), and then fight your insurance company to make sure you get the treatment your doctor believes is the right course of action. Good luck! 

reesefoggy

I'm sorry. It is scary.  This is NOT your Dr's decision or anyone elses but yours.  My Dr. recommended a lumpectomy.  I then said I needed to think about it, he suggested I see the oncologist and plastic surgeon to help me decide as well. I did and I went with a uni mast. Get another opinion. You should be able to see all the doctors you will be seeing prior to surgery ESPECAILLY your oncologist. You should know exactly what is going to happen in your future.  I didn't go under until I had a plan from start to finish. Your doctor should not be telling you which route to take. Fight for you and fight your insurance if you need to. I am also in Nor Cal but I am fortunate to have Kaiser in a large area.

seawee34

Luah - yes you are correct.  They cannot do radiation in the same breast twice, it would have to be a mastectomy if it reacurres.  It is so hard to make the right decission.

seawee34

Well, I feel much better today.  All the other biopsies came back negative but I am sure sore!  I had a better conversation with my doctor today, I just layed it all on the line today and she did answer my questions.  Surgery was going to be on the 15th of this month but I have decided to postpone until I get the BRCA genetic test back which is expected back next week.  If it is positive then I guess my decission will be made for me, and if it is negative I still don't know exactly what I will do.  She explained a lot to me today and agreed to do what ever I decide.  She feels strongly about not doing the complete mastectomy on both breast together because she said it will be a longer healing time and they need to get me into chemo as ASAP.  Once I am healed from and done with the chemo and the rad then we can discuss the other breast.  I do feel more confident though.  I cannot believe how many people are telling me about their problems with the insurance companies, I guess I need to really pay attention to make sure things are getting paid.  I thought that when they refused to pay for the MRI that once I was diagnosed they would pay from then on out.  How can they refuse?  I don't understand?

Luah

It really shocks and saddens me to hear of problems with insurance companies. (Frankly, I'm grateful for the Canadian health care model.) No one who is dealing with cancer should have to deal with that crap too. Good luck with it seawee.

seawee34

So I received the results back from the BRCA genetic test and it is negative!!! I am so happy with the results.  I was afraid for our daughters and this gives us some relief.  Surgery will be scheduled again and we can get on with this.  Hopefully I will have a half way normal holiday season.

Kathy9433

Hi Seawea!!!  I am SOOOOOO happy for you and your results.  I know EXACTLY how you felt when you got the results......I have two daughters and three granddaughters and the relief is from head to toe!  Yay!!  Hug to you and XOXOXO

Kathy :O)