I need to fight for the right surgery for me.

Blessings2011

Hi bigshirley, and welcome to the forum.

I'm sorry you had to come looking for us, but very glad you found us.

It sounds like you got your question about the insurance authorization of a larger surgery answered, so I won't address that.

What I can tell you is that I was diagnosed with multifocal (in more than one place) DCIS over a year ago, and chose a double mastectomy because of my history (Mom had BC) and my Original Girls were HUGE - heavy, droopy, fibrocystic, and hung nearly to my waist.

Like Beesie and others have said, often there is more going on than DCIS, and you want your surgeon to be able to diagnose that.

I had seven different procedures before my BMX, and during the last two, they found Invasive Ductal Cancer. It was considered to be a microinvasion from the DCIS.

I understood exactly what would happen during the mastectomy, because I dogged my surgeon every time I saw her. I always went in with a two-page list of questions, and I wouldn't let her leave til she answered them.

Like SpecialK, I had my radioactive isotope injection in my left (cancer side) breast the morning of my surgery. During the mastectomy, the breast surgeon uses a small tool like a geiger counter to locate the Sentinel Node. Since there is no big sign on a specific node saying "SENTINEL NODE", they remove only the ones that are "hot" or "light up" with the tool. In my case, they removed three nodes, all of which showed no sign of cancer. There was no need for additional removal of any axillary nodes.

The cancer also had very clear margins, meaning no radiation, and the final pathology report (the one everyone holds their breath for; the one that shows a detailed explanation of EVERYTHING that was removed from the breast tissue and remaining SNB) showed there was no lymph node involvement.

Before I joined this forum, I had very little idea about what breast cancer involved. I assumed the worst, having heard all the horror stories and watched all the scary movies on TV.

Here, I learned that's just not always the case. Every day, women are being diagnosed with BC (a tragedy, but that's another story) and every day, women are pursuing treatments and getting better. There are some incredibly inspiring stories here. 

It totally changed the way I thought about how I would proceed if I found out the cancer had spread. It removed the fear.

Today, it's been over a year. I am done with my reconstruction, I've lost weight and gotten healthier, and my only treatment is five years on a drug that removes estrogen from my body. I don't regret a single choice I've made.

I'm so sorry your husband is having a hard time dealing with this. Many men do. And losing your son at the age of three...I can't begin to imagine the sorrow. Now you are faced with a scary situation once more...

We're not doctors here, nor are we therapists. But in one way or another, someone here has walked in your shoes. And the best thing is, we are always here to listen!!!

I hope by now you have been able to have a better conversation with the person you need to see about your upcoming surgery.

Keeping you in my prayers....

bigshirley

Thank you again everybody for the support and advice.  I have found out more here in one day than I have found out in 6 weeks from my surgeon.  I wasn't able to talk to the doctor today, but I was able to talk to the other lady I was looking for in the office.  I told her I was willing to do the SNB, but not an axillary node dissection.  I also told her I wanted the tissue in both breasts removed, but not the pectoral muscles.  I put my foot down on my chest muscles being taken out.  And...in the end, I am just hoping that everybody here is right about the consent form on the day of my surgery having a detailed description of the procedures they are planning on doing, so that I can say no to anything that I have already told them I'm not comfortable with.  I am going in the day before the surgery to get the dye injection.  Is that normal?  And will that injection hurt?

SpecialK

bigshirley - sometimes the SNB is done as a separate procedure, it is actually a good thing as they may have time to complete the pathology prior to your procedure the next day.  I did not have too difficult time with the injections - kind of a bee sting feeling.  See if you can get a prescription or sample of a cream called EMLA - it is a lidocaine cream that numbs, but it takes about an hour to really work.

bigshirley

Can they give me a lidocaine injection first that works right away, like they do before they put my i.v. in?

SpecialK

bigshirley - I have read that they don't like to inject the lidocaine because it may interfere with the tracer injections, but this is a question you can ask.  As I said, for me personally, I did not have any lidocaine - even the EMLA cream, and it was a stinging that was brief, short lived, no problems.  Do you have a pre-op appointment in advance of your SNB, where they do vitals, draw some blood, do an EKG, etc?  That would be a good time for those kinds of questions. 

Beesie

bigshirley, I'm so glad that the information we're all providng is helpful to you.

About the injections, I didn't have any numbing and I'll admit that it hurt like hell, but only for at most 5 seconds with each injection. My trick was to count the seconds - to really concentrate on counting the seconds so that I was thinking about the time and not the pain.  1...... 2....... 3...... Ah, no more pain!  In the end, honestly, it wasn't a big deal.  Afterwards I remember thinking that it was really a shame that the last feelings that I'd ever have from that nipple were those painful injections.   Of course, considering that that damned breast failed me and got breast cancer, sometimes I think that the breast deserved to have pain be it's last feelings!  

bigshirley

The injection appointment IS my pre-op appointment, the day before surgery.  How many injections are there?  Oh, man...I don't do pain very well.

mgdsmc

Bigshirley



See how all the women on here understand how you are feeling? I'm so glad you are going to reconsider having treatment if needed but will pray you don't.



If you don't get to talk to the person you need to or your surgeon don't worry too much. You should have a preop appt before your surgery date and you can get information at that time. Since you have been approved for procedures it just a matter of you and your surgeon deciding on the procedure you want. A consent can be changed and signed right before surgery so don't worry too much. Just remember to make sure it says exactly what you want to have done and no more. If you only want a simple MX not radical MX make sure that's no where on the consent. But if your doctor explains the reason he might prefer the radical MX and you agree than the consent will say something like simple MX vs radical MX meaning simple MX is your choice but if radical is needed you agree to it. Hope I'm not confusing you, just want you to understand because sometimes people sign without knowing exactly what they are consenting to.



I'm very happy that you found this site to help you😊

Annette47

When they did my node mapping, it was about an hour or so prior to surgery.   They did do lidocaine injections first (quite a few of them).  I didn't feel the tracer dye, but the lidocaine injections were not painless, either.

honeybair

Stage 0 DCIS and being urged to get radical mastectomy is very unusual.  I had this 11 years ago and underwent a lumpectory followed by radiation and no follow-up meds.  Had 11 wonderful years and now have a return tumor showing up in my right armpit.

I would run to find other doctors.

exbrnxgrl

Radical mastectomies are not the usual these days even for invasive cancers. Radical mx involves taking all the muscle and nodes. More often only as many nodes as needed are taken and the muscle is not taken unless there is a compelling reason to do so. Radical mx are very old school and most surgeons , who are up to date, don't do them unless there is good reason,

Lorettal

I had DCIS 5 years ago. It was just in the ducts so I had a lumpectomy. I also did Tamoxifen and internal radiation. I would like to say that cured me as it does in many, but this year I now have invasive DCIS. I still believe I did the right treatment. I will be going for a simple bilateral mastectomy in Febrruary. I have no lymph nodes involved and they will be using my pectoral muscles for the reconstruction.

I would definately get a second and third opinion. That just seems so drastic for your diagnosis.