New diagnosis and feel like I'm missing something

dandw227

Hi everyone,

I was diagnosed with IDC on November 29th after needle biopsy. I met with a breast surgeon on December 1st and he immediately scheduled me for a lumpectomy and sentinel node biopsy on the 27th and suggested that we'd follow surgery with a course of radiation. We then proceeded with an MRI that confirmeed no additional spots. My concerns now that I've had some time to digest this is that I didn't get a second opinion in the last few weeks. 

Now, as we approach the surgery date, I'm having serious second thoughts about only doing the lumpectomy.  Should I have met with any other people during these last few weeks? or do the oncologists and radiation oncologists come after? I feel like I don't know what I should be asking or talking to and don't want to make the mistake of having surgery and radiation and then not be able to have a good reconstruction. 

 I have pretty small breasts to begin with, so although my tumor is only about 1cm, I'm worried that the lumpectomy and radiation will cause some pretty noticeable disfigurement.  I'd love some advice on how I should proceed. Thanks in advance. 

kira1234

If you are wondering if you should have a mastectomy I would set up an appointment with the BS to discuss it with him.  In my case I only met with the BS before surgery. If chemo is needed that is usually done before radiation. There is a test they run on the tumor called the Onotype test that helps us decide if chemo is recommended. You also don't mention if the tumor is ER/PR positive or negative. These also are important things to know when deciding on treatment.

Shrek4

You should have lumpectomy and SNB. Also, by my knowledge, once you have invasive you should do adjuvant chemo? Radiation I think it only depends on the lymph node involvement.

Honestly I didn't hear yet of IDC treated with only surgery and rads, no chemo.

Here, you can see benefits of various treatments on this site. You do need to know though if ER/PR/HerNeu positive or negative, as well as grade and lymph nodes involved.

http://cancer.lifemath.net/ 

Are you more worried about disfigurement than about being dead? Sorry for being blunt.

kira1234

Day I think if you have a lumpectomy rads are always recommended. Chemo was not recommended in my case till my Oncotype test came back at a 24, and then the decision was left up to me. That being said my tumor was very small. The size of the tumor is a major factor in the recommendation for chemo.

Shrek4

You are probably right. And yes, I forgot that lumpectomy is automatically rads. Maybe because I was so fast in taking the decision to have BMX so I wouldn't worry about recurrences lol

Hope60

It sounds to me like everything is proceeding as it should so far.  Your BS ordered the MRI to make sure there were no other spots....standard procedure. You are stage 1 with a small tumor, and I think most breast surgeons would recommend a lumpectomy for you.  Radiation always follows lumpectomy....they are a "package deal."  So your surgeon will refer you to a radiation oncologist. Don't worry....you have time for this since they don't start rads until you've healed from your lumpectomy.....about a month or 6 weeks.  Chemo would depend on many factors...size/grade of tumor, hormone receptors, etc....and you probably won't know that stuff until after your lumpectomy. Take this this thing one step at a time and you  will be fine.  Wishing you all the best.

mdg

I think you should weigh all of your options before you do surgery.  I would not only meet with a breast surgeon, but a plastic surgeon so you can also evaluate your reconstruction options if you decide to go with a MX.  I had two opinions for surgical oncologists and plastic surgeons before I hd my surgery.   I was glad I did because I wanted a DIEP reconstruction but was not a candidate for anything except implants.  Both PS's said the same thing so I was glad I knew all of that before I decided anything.  I am happy with my decision and just completed my reconstruction on December 9th.  It feels good to finally be done.  Good luck with your decision and treatment.

profbee

I chose a BMX when I could have had a lumpectomy.  It's a really personal decision, but one you should give yourself the time to consider.  Enjoy the weekend, and next week call the office and ask to talk to the doctor.  A phone call where you express your concerns and get some answers may be enough to ease your mind.  I don't know the numbers, but people here have said that once you find breast cancer it's really not an emergency to do surgery.  Waiting a couple of weeks (or even longer) wouldn't be a big deal.  You should feel good about your decision and not feel rushed.

peggy_j

I was in your boat: having second thoughts about surgery (in my case, because I was concerned about possible risks of radiation.)  I was the one who wanted to have surgery ASAP but I think profbee is right, that  you can probably wait a little bit to make sure you're making the right choice. If you choose to meet with your BS again (and/or get a second or even third opinion) you may want to consider having someone come with you. I never bring people to my doc appointments but I brought my husband to these first ones and I'm glad I did (it made is easier to discuss with him later; he also caught or remembered some comments from my BS that I missed).

Gayle56

I had a lumpectomy 3 weeks ago.  The only person I met with besides my breast surgeon was the radiation oncologist.  Both explained everything to me in detail, and gave me my options and gave data to back up their recommendations.  I felt much better abut the radiation after meeting with him.  I actually have another appointment with him tomorrow to go over my pathalogy report and to see how I am healing.  My surgeon did a great job, aside from my breast being a bit smaller now you can hardly see where the incision was.  I will be meeting with a medical oncologist this week as well as a consultation and I believe he will be monitoring the hormone therapy I will need to be on for the next five years.  So far no chemo is indicated, although I am still waiting for the results of the Oncotype test.  

I am very comfortable with my surgeon and the people he has sent me to so far.  I will however,get another opinion if chemo ends up being back on the table if the Oncotype score is high.  It is all very overwhelming but I am trying to educate myself as much as possible.

Roberta15

Hii Gayle, I'm in NY too. Where did you get your treatment? I had a lumpt. and rads AND 4 rounds of chemo as my score came out to be 25. However, MY thingy was 1.5 cm.

dandw227

Thanks for the advice everyone.  I'm in NY too-- on Long Island and had been using a surgeon at Stony Brook University Cancer center. I met with the breast surgeon today and I think part of the problem is that he's not the right surgeon for me. He seemed annoyed by my questions and my desire to look at other options instead of the lumpectomy and radiation. I'm in the process now of seeking another surgeon and have some great referrals to follow up on. 

I feel fortunate to have found this board and really appreciate all of the advice. I just wish there was more you could know at the beginning. I feel like it took me 3 or 4 weeks to just get to the point where I knew what questions to ask.  

Thanks again, 

Danielle 

encoremom

Hi Danielle, I was in the same position as you.  Find someone who will sit down and explain all your options to you.  I originally went to a BS for my biopsy who said lumpectomy, probably radiation and probably no chemo without fully explaining all my options to me.  I felt like she was making the decision without consulting me.   I went for a second opinion to another BS who explained the lumptectomy and its associated treatments/risks as well as a mastectomy and it's associated treatments/risks.  He said it was totally my decision and that the recommendations for chemo or not would come after surgery and the onco type test.  I appreciated his taking the time to explain all my options and then letting me make the decision that was right for me.  I highly recommend getting a second opinion from someone who's willing to answer all your questions. 

Gayle56

Roberta15  I had my surgery at Dobbsferry Hospital in Westchester.  My surgeon has a breast center there - the Ashikari Breast Center.  Where in NY are you?

Gayle56

Today I went to see the Medical Oncologist.  I really liked him (even after I waited almost 2 hours for him) and he sat and talked with me for a long time.  The downside is he thinks I should have a short chemo stint - 4 treatments - 3 weeks apart.  My Oncotype was a 20 and my surgeon had said he didn't think chemo would be necessary unless my score was over 30.  The MO obviously disagrees with this and because I had interoperative radiation the rest of the radiation probably can't wait for the chemo to be done so I would be doing things a bit backwards.  The MO is going to call the other doctors and he promised to call me back by Friday with what everyone decides would be best.  Not having to start the chemo right away actually will give me time to get a second opinion on that. 

Cowgirl13

Danielle, definitely get a second opinion. I was very happy with my surgeon because she answered everthing and I loved her manner.  The oncologist was a different story.  Just couldn't connect with the oncologist so I got a second opinion and loved the oncologist.

Momine

Danielle, I had the same problem. The first surgeon was not receptive to my ideas about what to do. He would not even consider a BMX (I "only" had cancer in one breast, but wanted both removed). When I pressed, he wanted me to meet with a plastic surgeon to reassure me about how a UMX with reconstruction would look. He had not done a biopsy and had not thought to consult an onc. That is when I "fired" him and went elsewhere. My concern was not exactly about looks.

The surgeon I ended up with listened to my concerns, laid out the options and the pros and cons of each, and ultimately, after scanning me up and down and doing a biopsy, supported the BMX decision fully. He also had me do chemo prior to surgery, whereas the first guy was planning to operate right away.

SheChirple

Danielle:  I am so glad you decided to get a second opinion after realizing this doctor is not for you.  Every doctor I have met has encouraged me to get second opinion and repeated that they are not offended by it.  My very first breast surgeon even called me after my surgery with other doctors to check on me and let me know that she was happy to see my results and that I had reached a peaceful decision.

No doctor should make you feel bad for asking questions, nor for requesting second opinions.

The slight delays in waiting for those other opinions are nothing in comparison to the peace of mind you will have knowing that you properly weighed your options.  They ARE your OPTIONS. This is your life. These decisions are hard enough but impossible without being fully informed.

Good luck to you in your decisions.  Please ask as many questions as you need from these boards.  Everyone here has been so wonderful for me.

BelaT

I was diagnosed recently- cried and cried for 2 weeks. recovering from lumpectomy and lymphnode removal and waiting for oncotype to come back to start treatmnt. how soon did u start treatment?

BelaT

what treatmrnt did u choose? I am so confused and upset cant think - 46 yrs old 

BelaT

I am so scared, I need to talk. please

dandw227

Thanks everyone. The more I think about it, the better I feel about getting a new surgeon. Appreciate all of the advice.

 BelaT-  I haven't started treatment yet. I'm leaning toward having a double mastectomy but the surgeon i had been dealing with wanted to do just a lumpectomy and radiation. So I'm in the process of finding a new surgeon who might be more supportive of my decision.  I'm sorry this is so difficult for you. I'm happy to talk with you. I will send you a message with my phone number in case you want to call and talk.

 -Danielle

profbee

Bela, hon, it's okay.  You're at an early stage, and your cancer is ER/PR positive which means there are great drugs they can give you to treat it if they need to.  But it's not in your nodes and you have DCIS--which is the BEST case scenario (besides totally benign of course).  Hang in there. When will you get your results?  

BelaT

My oncotype dx is 23, invasive carcinoma and I have to make decision if I want chemo. its stage 1

kira1234

BelaT, My oncotype score was 24. Don't you just love the way they leave the decision up to us? Good luck it is such a hard decision to make.

BelaT

what did u do? kira? Thanks for the reply , I am basket case

profbee

Ah.  Well, I didn't have an oncotype done (I'm HER2+, so they said not to bother because it would be high).  I just turned 40, and I just felt that I wanted to do everything I could to make sure this was the only time I"m doing this.  (If I recur, it won't be because I wasn't aggressive...not that it couldn't happen, but I'm trying to lessen my chances with every choice.)  So, I chose a BMX and we did chemo.  (Again, with my age and the HER2+ there wasn't much of a choice here).  

Chemo really wasn't all that awful.  I mean, it's no picnic, and being bald sucks, but they have meds now for the nausea, so it's not quite the daytime tv special it used to be.   It is such a whirlwind at the beginning, but you have time to get second opinions and feel informed and make your own decision.  

Did you ask for some meds for anxiety?  That was when I really needed it.  My gyno first suggested it when I got my diagnosis.  She said I needed to get my sleep because I was going to have to make a bunch of decisions.  Boy, was she right.  My mind was spinning and I couldn't think without spinning out to a million possibilities and the medication helped stop that panic.  

We're here for you, Bela.   

kira1234

BelaT, I know how hard this time is. I wanted to do everything I could to never look BC in the face again. I was one of the few who was unable to finish the chemo treatment due to really bad SE's. I will tell you though I wish I could have had the added insurance from it, but my Dr's assure me for those of us who are ER/PR + the AL's or Tomox. are the major treatments for us.

The other really important thing I've been told is to exercise daily. I don't understand why but my Onc. told me it is almost as important as the AL's.

The last thing I will mention is your age. You are very young. Chemo though not fun only last for a few months. You have 40 years or so ahead of you hopefully disease free.

BelaT

Thanks , Kira. I understand what you are saying. What side effects did u get? I am anemic and also allergic to antibiotics.Are doing well?

BelaT

Dear Profbee,

Thanks for the advice, no meds for anxiety yet.and no decision on treatment yet. all went so fast i haven't had time to digest any thing.

I hope you are doing well. I feel you all are here so brave .

Bela 

kira1234

My situation is unusual I had internal radiation right after surgery, and the Onc. I had at the time rushed me into chemo before I had healed from the radiation. I got a very bad infection along with radaiton burns caused by the chemo. It took 6 months before they got the infection under control. By then I was past the window for chemo.

It has been 16 months now, and I am feeling much better. My situation went before the board of the hospital and changes are in place so what happened to me will hopefully never happen again.

If you have alergies and are allegic to antibiotics be sure you Onc is aware if it. I would aso suggest you talk to at least 2 Oncs. I have learned if I had 2 out of 3 would not have suggested chemo for me. Just remember I'm 57.