DCIS and Mastectomy?

Kd6blk

I agree with you Cindi...got tired of all the tests and lumpectomies...so I had my good breast removed too...I figure it was only a matter of time before it went bad...my BRAC was negative but enough was enough.

CindyLooWho

I meet with the PS on Wednesday and I'm actually looking forward to it! I know it sounds crazy...

mlsnow1964

It is great when the drains are out, freedom at last. i need to get started on my exercises, I am not really limited too much on what I can do.

mlsnow1964

It is great when the drains are out, freedom at last. i need to get started on my exercises, I am not really limited too much on what I can do.

CindyLooWho

So kd6blk did your insurance company give you any trouble? Mine denied my BRCA and because of that I won't the criteria for prophylactic...I cried all day yesterday. We are appealing of course...but I am sick about it.

Kd6blk

My family history was enough for my Oncologist to request and the insurance did pay. They did deny another cancer gene test we wanted but I did get the BRAC, but I was Negative. I was still able to get a double mastectomy and rebuild. If your insurance company is otherwise pretty decent, have your oncologist make a better case for you. You need to make a list of all the cancer in your family, I created one and that seemed to be the ticket. So, are they telling you that without BRAC being positive you are being denied a mastectomy? That is nuts. You may need some help with this. There are many avenues for help with breast cancer. Ladies here in this board, can you help? I know you can google breast cancer help and the area/state for help. I guess insurance policies offer varying degrees of service...best wishes CindyLooWoo. xoxox.

BLinthedesert

My insurance paid for my test too, family history of early (< 30 years old) breast cancer and ER-/PR- was enough.

Myriad - the place that does the BRCA1/2 test will give you a different price if your insurance won't pay -- they will also help you negociate for the test. See their website for details ...

  

proudtospin

there is a lawyer who posts on one of the threads, course I can not remember which but think he is NML or something like that, his wife is stage 4 and he seems really good so maybe you could search out him ?

CindyLooWho

The genetic counselor requested a review with a medical director today and it was approved!



To be clear the mastectomy for the cancer breast will be paid no problem. It is meeting the criteria for prophylactic on the other breast that might be difficult. I have a case manager helping me build a file in case we have to appeal. Surgeon said my breasts are so dense they are like rocks compared to other women's. So monitoring is an issue. My MRIs light up like a planetarium.



I have to be careful because my insurance carrier is my employer. Which is good because I do know how to navigate the system better than the average person.

Kd6blk

Best wishes working it out CindyLoo, your situation sounds similar to mine but I was so lucky no one got in the way of the second side...

armywife199

I am sorry for your grief.  I also chose Mastectomy with DCIS but what I have regrets about is the SNB that left arm numb.  I thought I was consenting to 1 node ( closest one that was so important) and turned out to be 4 that were taken and ALL were perfectly clear.  Its like if you take care of yourself and all works well and clear.  That stuff goes thru you quicker and therefore Dr. feels justified to take those nodes.  It was a one sided affair though so I will Quickly NOT Consent to such a procedure for DCIS again.  Other Dr. say that was standard care... well one day so was complete removal of the muscles of the chest wall.  It is time that these things are thoroughly discussed and patient given the opportunity to opt out esp. for DCIS that was NOT invasive.

Kd6blk

They took three of my nodes, two had isolated tumor cells. Where did they come from as I had DCIS and nothing else was ever found--no invasive cancer. One node, I would have been node negative...with two I am in no man's land. A few years ago they would never have detected it...now I have to take estrogen killing pills for what could be surgery backwash. I wish this were more of a science and less of a crap shoot.

--Lisa 

GreenMonkey

boy, you've got that right Lisa. crap shoot is exactly what it is! my one node turned into three nodes on one side and one on the other. I don't understand the DCIS and isolated tumor cells? 

I could write a book on all the bullshit and disappointments. So far the only thing I don't regret is my BMX especially since, after two biopsy's, two mammograms and one MRI I was told I had DCIS on right and pre DCIS on left. I had the "HEAD" breast surgeon at MSK tell me that I was "over reacting" and that a mastectomy was unwarranted, unnecessary and that she "strongly advised against it." 

My final pathology report showed DCIS, LCIS, ADH, ALH in both breasts. My advice is always.... trust your gut!

my latest rant about this is here:

http://greenmonkeytales.blogspot.com/2012/09/what-i-learned-on-my-catstir-vacation.html 

Kd6blk

I was lucky, my docs all supported the bmx...I just find the information and diagnosis part of this is still pretty primative, though better than it used to be. I had similar reports in my breast as well. HUGS GreenMonkey.

JMH46

Well Hello Everyone,

I went to have my surgery on Thursday. I must say so far and it is only Saturday I am doing great. I left the hospital early I did so well the nurses and doctors were amazed. My pain level as been ok I don't let myself get behind. I had tissue expanders put in at 500cc each. My BS and my PS surgeon did a great job. they told me I can un bandage today but I don't want to maybe tomorrow. Drains are good! I only feel a lot of pressure and sore muscles. I am taking something for pain, a muscle relaxer and an antibiotic. I Hope everyone is doing good, I just want to say I feel I made the right decision especially when I hear my daughter say well atleast you are cancer free! I will stay in touch with my progress!!

CindyLooWho

They approved my BRCA so now I have to wait. I'm prepared to fight and appeal for BMX, if my carrier won't cover the left breast. I am also going to ask my PS if she will accept the contracted rate for the left recon (if they don't cover the surgery they won't cover the recon) and let me make payments. She was outraged when I told her they might not allow so I think she will work with me. I just can't live my life being monitored every 6 months forever or until they find something else. Because the truth is they don't know what is going on in there. Right now I'm stage zero but final staging is after surgery so that could change.



And meanwhile they are taking their time dotting i's and crossing t's and have who knows what growing in me!

GreenMonkey

JMH, thats GRRRRREAT! I have never regretted my decision to have a BMX. I have regrets regarding my PS but not the procedure itself. I am also in CT (fairfield county).

CindyLooWho, (love the name), As soon as I was told I had DCIS on the right I knew I wanted both breasts removed. When I told my surgeon this he said I would not have to worry about my insurance company contesting it because it saves them money - two at once, no additional treatment, etc. As it turns out they found pre DCIS and LCIS and pre LCIS in the left so the BMX was no longer considered prophylactic. By the way, not to freak you out but my LCIS and pre LCIS did not show up in mammo's or MRI's etc. It wasn't discovered until the final pathology report so your inner wisdom might be trying to warn you. However, since I have no family history I can't get the BRCA test approved.

Good luck going forward! 

CindyLooWho

GreenMonkey who was your carrier?

GreenMonkey

Aetna POS

CindyLooWho

That's who I have too. Please keep your fingers crossed that they don't give me a hard time. Thanks so much.

Robin108

I hesitate to post because I don't want to change anybody's mind who is considering BMX after being diagnosed with DCIS. But felt my experience should be shared. I had DCIS grade 3 and was recommended to have UMX. I chose to have BMX. I initially had lumptectomy but was told there wasn't clean margins. Then after surgery the pathology report showed there was no more DCIS.

The problem is that after almost 6 months I am still having considerable discomfort due to nerve damage during surgery and scar tissue that formed. My intention is not to change anyone's mind, but should make women aware of that possibility.

Momluke

Robin,

Thank you for sharing! Its good for us to share all of the good and the bad of our experiences. It helps us to know that we are not alone. It helps us to be prepared for possible issues. And finally it helps you!



One thing I have discovered is that all of us have experiences that are somewhat similar but yet very much different. Being able to share it in this "safe place" is such a blessing.

GreenMonkey

ohhhh I could go on and on about this... I don't regret my decision to have a BMX for DCIS and LCIS, as a matter of fact they would have never even known about the LCIS if it wasn't for my final pathology report. My mistake came with my reconstruction. I've been blogging about this but I want to be even clearer... 

I would NOT do immediate reconstruction if I could do it all over again simply because I was so focused on the cancer I did not give enough energy to the reconstruction. 7 months later and I'm in pain due to revisions from the initial reconstruction. I've had 3 revisions so far. What a mess they made of me.

There is so much to consider regarding reconstruction. I knew immediately that I wanted Tissue Expanders but I had serious concerns about the PS that my BS worked with. When I expressed this to her she said, "OH, don't worry, putting in the TE's are the easy part. It's my part that is important" .... Yes, its important to get a good mastectomy but the reconstruction is HUGE and for me its criminal the mistakes they made.

First, ask who is going to do your surgery. According to my plastic surgeon (head plastic surgeon at memorial sloan kettering) he was "there for the important parts" but he didn't place the explanders, he didn't open the muscle and he didn't close me up. He just watched. My reconstruction was done by two residents. Left side resident did a better job - she gets a C-. Right side resident gets a F for F*ckUP.  My revisions have been necessary due to both opened the pocket under the natural fold too deep and both misplaced the expanders.

For anyone considering TE to implant reconstruction please go to my blog, look at my pictures, contact me directly.

http://greenmonkeytales.blogspot.com/p/catstir.html

There are several posts here starting from my hysteria after beind diagnosed to my latest revision.

Robin108

Just curious Green Money, how did you find out who did what during your surgery. My reconstruction was immediate free flap reconstruction. I've been wondering if it was my plastic surgeon or an intern.

Momluke

GreenMonkey...

Wow!!! I had a UMX with immediate reconstruction but not with a TE. I have a friend that had a delayed reconstruction (about a year) with TE's and she said the pain with the TE's was horrific. Everytime the pain would start to get bearable it was time for another fill.



My reconstruction was done with my lattisimus dorsi muscle. My PS told me that the pain from pulling the pectorial muscle from the chestwall can be more difficult to deal with than the moving of the lat flap.



I had my surgery a little over 3 weeks ago and my biggest complaint thus far are the spasms....they don't hurt, just intense.



I am so sorry your TE experience has been so difficult. I hope you can get someone to finally get you right. So frustrating to know that residences that were "supervised" did that to you!

GreenMonkey

Robin, I got a copy of my operating room report. It doesn't say who did the left and who did the right, only that they (it gives their name and says first assistant and second assistant) participated in the surgery and that the main surgeon was present during certain parts (aka, the "important" parts) 

more photo's in this post:

http://greenmonkeytales.blogspot.com/2012/07/monkey-me.html

and this is me post my third revision: 

 http://greenmonkeytales.blogspot.com/2012/09/what-i-learned-on-my-catstir-vacation.html

(in this post I linked the photos) 

GreenMonkey

Momluke, I did find a new PS and she did my last 4 surgeries - the first to reposition my TE's, the second to redo an TE that reputured (no one's fault), the third to exchange from TE's to implants and my final surgery to redo the implants, adding alloderm because suturing was not sufficient to do initial misplaced expanders and the pocket being open too far. 

Momluke

Greenmonkey! I just finshed looking at your blog and the pics! You have been through so much! Your final foobs look great. I had no idea they had rub-on, rub-off temp tatoos! I will def ask my PS about it when I see him in 2 weeks. I am still a couple of months from the nipple creation. But since I still have my natural breast on the right I would love to see a temporary placement of the nipple before its done permanently.



I love how you make sure it is clear that the symmetrical sugeries or revisions are the right of the patient, whether its revisions on a double reconstructions or a tweaking of the non cancerous breast. Thank God for those wonderful women (and men) who fought for that on a federal level!

Moonflwr912

Greenmonkey, ditto on mamaluke! Looking good girl.

Hoya03mom

Good article

http://www.huffingtonpost.com/jackie-morgan-macdougall/breast-cancer-awareness_b_1924521.html?ncid=webmail12