I need to fight for the right surgery for me.

bigshirley

I need to fight for the right surgery for me.

bigshirley

This is my first post!  Six weeks ago, I was diagnosed with Stage zero DCIS.  My surgeon shows the compassion of a wet noodle, and she didn't tell me that there was more than one kind of double mastectomy when I agreed to that treatment.  My surgery is schedule for Feb. 1st, but I just received the itemized list of the procedures I will be having from our insurance.  And, it is ALL WRONG!  I did NOT agree to have a radical double masectomy that includes removing my pectoral muscles as well as removing a bunch of lymph nodes.  NO!  I have been doing enough research to practically be a nurse by now, and I know that I want the "simple" double masectomy where they only remove the breast tissue from both sides, NOT the chest muscles, and NOT the lymph nodes.  But I can see I'm probably going to have to fight for this change.  If my surgeon had taken more than 5 minutes to really explain my options to me, I wouldn't be having this dilemna.  And, since someone is bound to ask me why I don't want them messing with any lymph nodes?  My answer is two fold.  First, I'm not comfortable with the risk of developing lymphedema.  And secondly...here goes...I have already decided that surgery is the only course of treatment that I am willing to have.  I don't want radiation or chemotherapy.  And if my cancer really is what they say it is (stage zero, contained in the ducts), then it shouldn't have spread outside the breast anyway.

Jomama2

I hope others post soon, but I would NOT agree to this surgery...please get a second opinion...or third. You have done the research, so you know you need a team you can trust. I would question everything from node removal to chest muscle involvement.  Again -- seek other professional opinions!

SpecialK

Before you assume that your surgeon is doing the wrong surgery - or doing a certain kind of surgery without explaining the options to you, you need to make sure that your insurance company does not simply list the worst case scenario prior to surgery so that permission and payment are not held up if your surgeon were to find an unusual situation once you are in the middle of surgery.  Just because the insurance is authorizing payment or permission of a more involved procedure does not mean that your surgeon plans on doing everything listed.  Are you seeing a breast surgeon or a general surgeon?  Can you call the person in your surgeon's office that submits the request to the isurance company and ask what procedures were requested?  It is also common to do a sentinel node biopsy, even in cases of DCIS, because there is no sure way to know if you have pure DCIS until you post-operative pathology is complete.  Many women have thought they had only DCIS prior to surgery, and then a micro-invasion of IDC is found.  A sentinel node biopsy (SNB) is not the same thing as removing a numch of lymph nodes - it is a sampling of the node that is normally closest to the breast to check it for cancer cells.

mgdsmc

bigshirley



It sounds like you need to sit and talk to your surgeon again. Does the paper actually say radical MX? You are absolute correct in not wanting that especially for dcis plus that doesn't make sense. It's probably a mistake that just needs correcting. It shouldn't be a fight at all.



As far as having nodes removed I think they only do that if its invasive to see if the cancer spread which wouldn't be the case with dcis. Most of the time the consent will say both just in case they need to check. If you don't want them to check just tell them they can't force you. Of course if you do have invasive sentinel node needs to be checked but that is still your choice.



Do you plan to do immediate reconstruction? Have you been offered a nipple/skin sparing MX on the unaffected breast or if you can on both breast?



Don't get to upset about this yet because radical MX are rarely used anymore. Just call your surgeon to clarify.



Good luck😊

bigshirley

Thank you all for such quick advice.  I came to the right place!  The form I got is the referral authorization from the insurance company that states approved planned procedures as follows: #1)mastectomy radical including pectoral muscles and axillary lymph nodes #2) BX/removal of deep axillary lymph node #3) injection for lypmhatic xray #4) injection to identify sentinel node #5) lymph system imaging.  The breast surgeon has always insisted that I have the lowest form of cancer...the absolute beginning stage.  Actually, I have microcalcification clusters in more than one place in the left breast.  I decided to go with a double masectomy because I didn't want to have to go through this again in the future with my right breast.  Besides, although this is ofcourse terrible circumstances...I hate my boobs.  They are huge and hang almost to my waist after having 5 kids and gaining a lot of weight over the years.  This is all so new to me, but I am still in a hurry to get my surgery over with.  But I am NOT agreeing to something that I consider overtreating.

SpecialK

Again, the insurance company may be authorizing the worst case scenario so that it is an available option if necessary, even though this is not necessarily the surgical plan.  This sometimes is how things are listed on the authorization - in case something was discovered that was more involved you don't want the surgeon to close you and subject you to a later surgery because your insurance company has not authorized the more involved procedure.  That is why I suggested contacting the insurance and surgical coordinator person in your surgeon's office to see what was submitted for authorization. #2, 3, 4 & 5 are the sentinel node biopsy authorization.  Definitely check with your surgeons office and reiterate what procedures you are willing to have.

bigshirley

Ok...I guess I feel SLIGHTLY less frantic about this.  I will be calling the surgeon's office in the morning and asking for someone to explain this to me in language I understand.  But, above all else, I am positive that I don't want a radical masectomy.  I am only willing to have breast tissue removed, not the chest muscles.  I don't think anything will change my mind about that.  So, axillary deep node is the same thing as sentinel node???  Geez...this is confusing.  And I have always felt like this particular surgeon was kind of doing drive thru medicine with me.  You know what I mean?  When you can tell they are just rushing through your appointment so they can get to the next patient.  To say I have not been well informed up to now would be an understatement.  And when I have called their office to ask questions, I am usually met with an attitude for bothering them so much.

mgdsmc

You are absollutely correct in being concerned. That is way too much to have done for dcis. I'm truly in shock that they want to do all of that removing your muscles? What reason would your surgeon want to do all of that? The dye to locate the node yes, alnd maybe if sentinel node positive but tell how many they are allowed to remove. Some doctors take them all and only a few had cancer. The more they remove the higher your chance of lymphedema but of course you are aware of that. I had 10 removed and none yet.



When you talk to your surgeon just make sure you understand everything be or she plans to do and why. DO NOT sign a consent that has anything you don't wont done on it if you do that gives them permission to do it but I'm sure you are aware of that😊

bigshirley

Can I agree to the sentinel node biopsy without allowing them to take out any more lymph nodes, regardless of the findings?  I admit to being TOTALLY paranoid about ending up with lifelong, painful lymphedema.

MelissaDallas

I worked for a health insurance company for many years. Again, the maximum that is authorized is not necessarily what the surgeon intends. My guess is it is a boilerplate approval for all contingencies. I would imagine there are some small percentage of cases where it turns out that there is extensive disease down into the chest wall where a radical mastectomy is required. That doesn't necessarily mean that applies to you. They can't very well leave you knocked out on the table while they spend a couple of hours trying to get additional insurance authorization when things are worse than intended.

mgdsmc

Yes that is your right and some women only have the sentinel node removed even when it's positive for cancer. Now the downside is you won't know have many nodes are involved. I'm not sure but I think those women agree to have chemo but I do know the amount of nodes involved has to do with staging. It is your body and your decision but once nodes are involved chemo is usually not always part of the plan. You can refuse that as well some women prefer not to have chemo and that their chose.



Anyway I'm getting ahead of things. We are going believe your cancer is truly dcis and all you will need is double MX. You should really consider reconstruction if you haven't thought about. But as with everything else some chose not to and are happy. So you see there is no wrong or right way just your way and that all that matters is that you are happy with your choice.😊

bigshirley

I am definitely planning on reconstruction.  In fact, the reconstruction surgeon was not only a really nice guy...but he took all the time I needed to answer all of my questions.  He went into great detail about everything, and I found myself wishing that he was the one doing my double mastectomy.  When I went in to have my biopsy, I had to tell the nurse that she was looking in the wrong place, even though she was looking at the mammogram pictures.  Then, when I got to the hospital to have the actual procedure done...all of the paperwork said they were doing the OTHER breast!  WTF???  Thank goodness I was reading the fine print.  I had a fit, understandably.  The receptionist insisted it was probably a simple type-o, but I wasn't having any of that crap.  The surgical team goes by the specifics on the paperwork when it comes to what they do to you once you're asleep.  I wouldn't even let them put my i.v. in before I saw written proof that they had changed which breast they would be working on.  So, you can see why I am unglued about this form I got.  Once they put me under...I don't have control anymore.

mgdsmc

Girl you don't have to tell me. I'm an RN and know that happens more than people know. That's why it's so important to read and understand before you sign the consent. My consent said simple MX and I said that's wrong and refuse to sign. When the surgeon came he said I know I'm doing nipple/skin sparing double MX. I said I'm sure you do but the consent needs to say it too. So he wrote it in than I signed. If I would have just went by his word and woke up with no nipples or my own skin what could I say or do? My procedure would have matched my consent.



We in the medical field are human and make mistakes. I don't get upset when my patients correct me I tell them thanks and I'm glad you are aware of what's going on, but never to the point of the wrong area for anything.



I agree I wish the PS did the MX not sure why they don't. So you are having reconstruction at the sametime as your double MX?

bigshirley

I have another question for women who have already gone through this.  On the day of surgery for mastectomy...is there a list of procedures that the insurance has approved, and a different list of procedures that the patient has approved?  I understand the surgeon needing approval for worst case scenario stuff...but I want it to be CLEAR that what I am willing to have done and what the insurance says is ok are two COMPLETELY different things.  One thing is for sure at this point...NOBODY has asked me what kind of mastectomy I am willing to have, including my own surgeon.  And I am afraid of showing up at the hospital on the day of my surgery, only to find out that things are not scheduled to my satisfaction.  My husband will already have made the arrangements to take time off from work to stay home and take care of me and the kids.  Re-scheduling surgery at the last possible minute will mean that I won't have anyone to help me at home when I am recovering.

SpecialK

It is never a problem to do less surgery, so I don't think you would need to reschedule to have a lesser surgery than your insurance authorization states, but you should check with your surgeon's office prior to surgery.  You have plenty of time to determine this prior to the day of surgery.  The consent is what you are signing where you make agreements about what will be done.  Look at mgdsmc's post above regarding what she wanted the consent to say before she signed (agreed to) it.  Also, you should be asked by admitting, the surgeon, the anesthesiologist and pre-op nursing staff prior to the surgery "what procedure are you here to have done" because it allows everyone to be on the same page.

mgdsmc

It's doesn't matter what the insurance company approves or what the doctor request as far as your surgery is concerned. What the consent says and if you sign it will be all they are allowed to do. So lots of time it would say example MX vs Double MX with possible alnd ect. Now that consent gives the surgeon to take one or both breast plus dissect the lymph nodes if he feels it needed. Say you don't want your nodes touched then they have to change the consent to say MX vs double MX meaning not to touch your nodes no matter what. That's why it's important that your consent says exactly what you agree to have done.

Beesie

bigshirley, I agree with SpecialK.  It sounds as though you are seeing the insurance approval.  The insurance approval should be as broad as possible so that the surgeon's office doesn't have to go back for more approvals if things don't turn out as planned. The insurance approval is not necessarily what the surgeon is planning to do.  What the surgeon is authorized to do all depends on what you sign up for when you sign the consent.

Some clarifications about node removal with DCIS.  Although DCIS cannot move into the nodes, where there is DCIS, there can be invasive cancer.  In about 20% of cases where DCIS is found in a needle biopsy, some invasive cancer is found during surgery.  The odds of this happening go up if you have grade 3 DCIS, DCIS with comedonecrosis, or a large area of DCIS or multi-focal/centric DCIS.  Once any amount of invasive cancer is found, the nodes need to be checked, both in order to get an accurate diagnosis and in order to be able to develop the best possible treatment plan.  However once a MX has been done, an SNB can't be done.  For this reason, an SNB is usually done when women with DCIS have a MX.  The SNB isn't done because of the DCIS; it's done because of the risk that invasive cancer might be found. 

If you agree to the SNB, I would not recommend that you tell the surgeon how many nodes to remove.  Agree only to the SNB - you can specifically say that you do not approve having an axillary node dissection, which involves the removal of more nodes - but understand that properly done, an SNB might be one node, or it might be several.  Mine was 3.  When an SNB is done, blue dye and/or isotopes are injected into several areas of the breast (this is why the breast needs to be there in order to do an SNB).  The dye/isotopes travel up to the nodes.  The nodes that the dye and/or isotopes enter turn blue or 'light up'.  Those are the sentinel nodes and those are the nodes that are removed during an SNB.  The theory of an SNB is that the dye/isotopes travel to and enter the same nodes that cancer cells would travel to and enter.  So if more than one node 'lights up' in the short time between the injection and the surgery, that means that cancer cells that might have entered that first sentinel node could easily have travelled on to the second (or third) node, possibly without even leaving a trace in that first node.  So if 2 or 3 nodes light up but you authorize the surgeon to only remove one node, that's not an effective or necessarily an accurate SNB. And there's no point in having the SNB done if it's not going to be done right. 

As for the breast that you are removing prophylactically (i.e. the one without breast cancer), on that side there is absolutely no reason to have any node removed. 

Hope that helps explain a few things!  

mgdsmc

Bessie

You are absolulty correct in everything you explained. I didn't go in to detail because the surgeon needs to sit and explain everything and why before doing any procedure. It's obvious that wasn't done and believe it or not nurses aren't suppose to do that. We are liable for any advise we give on or off line.



Sometimes doctors explain procedures and patients have no idea what they plan to do. Nurse will explain because we know but I always call the doctor back for them to explain. Thank you for saying what I was thinking.



Clearly the surgeon needs to sit and explain all the options. As I said some women only have one node some have 20 or more removed. It's always the patient choice the doctor can only recommend.

bigshirley

Ok...then I have another question.  Considering the fact that I have already decided that I don't want radiation or chemo no matter what...should I consent to the sentinel node biopsy? I mean...ofcourse it would suck if they found that the cancer had spread.  But, I wouldn't want radiation or chemo even if they did.  And what about the realistic risk of lymphedema afterward?  I know it might sound stupid for lymphedema to be one of my biggest fears...but that is something that can't be fixed once it happens.  And I don't want to spend the rest of my days in pain.  I don't handle the kind of pain that can't be easily eliminated well. 

bigshirley

My husband says I can't do another consultation appointment with the surgeon before my surgery because (1) we can't afford to keep shelling out $50 co pays every time we go there, and (2) he doesn't want to take another day or half day off from work to do it.  He will already be using up a good chunk of his paid vacation for the whole years when I have the surgery.  He's pretty worked up about the fact that the doctor didn't do a more professional job of explaining the nuts and bolts of the surgery in detail when we already sitting there in her office.  And my sister in law died about 5 years ago from breast cancer, only one year after one of our kids died at the age of 3.  So...my husband is a silent emotional mess about this...although he doesn't let it show.  In fact...he's doing TOO GOOD of a job keeping his emotions in check, because I am feeling like I'm very much alone in this battle... but,that is his nature.  He's never been quite the same since our little boy passed away. 

mgdsmc

Well you don't need to go see him in person. He can always call you on the phone and explain, it his job. As far as your mind being made up that's just fear. You have kids and a husband so I know your life is worth fighting for. You don't want you kids not to have there mom around right? If you only have one node removed and it has cancer in it are you just going to give up and let it tak it course or fight for your family? I know what it's like to watch a family member die fron cancer, my dad did. Remember lots of women survive this with treatment but one thing is for sure cancer will run its course no matter what unless you do something to stop it.

Having said that if you are 100% sure if it spread you don't want any treatment that's your right and choice. Than tell them it's no need to do anything except MX. The surgeon will even if he doesn't agree with your decision. Now remember if you change your mind later after MX that you want treatment you can do that but remember at that time it could be much more advanced than it is now. Just think about it before being so sure. I felt like you but I couldn't bare leaving my kids. Think about it you have time. Still call to have your surgery clarified.

dimples68

Hello ladies! Not sure if this is where I should post but here goes. Had an MRI and additional ultrasound last week. Showed a smaller tumor right next to the original one. I'm sure my doctors will now suggest a mastectomy. I meet with the oncologist on Friday. My issue is that I'm not in a breast center where all the doctors work together. My surgeon was referred by my gyno and the oncologist by the surgeon. Now where does a plastic surgeon fit into all of this? I want to go to Georgetown Univ in Wash DC for the plastic surgery since I've been told they are the best and in network for my. insurance. Can I get tissue expanders after the fact? Does it mAke sense to have different doctors. I'm thinking of switching everything to Georgetown. I'm confused.

Beesie

bigshirley, I appreciate that you don't want radiation or chemo.... I really do.  But I really don't think that you shouldn't make any treatment decisions before you know what you are dealing with.

When my dad was diagnosed with the same type of cancer that my grandfather (his father) died from, he already knew that he didn't want any treatment.  If he was going to die anyway, why go through all the pain and misery of the treatment? He'd seen his father go through that and there was no way he was going to go down the same path. Fortunately my father had a doctor who explained how his diagnosis was different, and how in his case the treatment could save his life.  It took a lot of convincing but he finally agreed to treatment.  So he went through a few months of difficulty because of the surgery and treatment.  And then he was fine. He lived for many many more years with no other effects, and eventually passed away at much older age of something completely unrelated.

With a preliminary diagnosis of DCIS, the odds are in your favor that you won't need rads or chemo.  But if it turns out that your diagnosis is more serious, the odds are still that it would be an early stage cancer that can be easily treated. If you have a very treatable cancer, do you really want to put yourself in a position where you might die because you refused treatment?  Treatments can be miserable, but they can save your life.

The point I am making is that you shouldn't automatically reject any treatment without knowing what it will do for you.  If the treatment is a shot in the dark and you'd rather not take that shot, fair enough.  But if you have a very treatable cancer, then why not treat it?  So, to answer your question, personally I don't think it's wise to not have the SNB because it will provide very important information about your diagnosis. 

Having said that, it does depend on what your preliminary diagnosis is.  If your biopsy showed low grade DCIS with no necrosis, and if there appears to only be a small amount, then the risk of finding invasive cancer is low and you may be able to pass on the SNB with little risk.  But if your DCIS appears to be larger or more aggressive, then the risk of finding invasive cancer is much higher and with that, an SNB would normally be done.

dimples, if you will be having a mastectomy and you want immediate reconstruction, then you need to have plastic surgeon who works with your breast surgeon.  So after your discussion with the oncologist, if you don't have the name of a PS from the oncologist, I'd suggest that you talk to your breast surgeon's office to find out who they recommend. 

SpecialK

dimples - I had a breast surgeon, plastic surgeon and oncologist who all knew each other, but were not part of the same group/hospital.  I was referred by insurance to the breast surgeon, but he is who I would have chosen anyway.  He requested the plastic surgeon due to the nature of the surgery - skin/nipple sparing double mastectomy with immediate tissue expanders.  The breast surgeon also referred me to the oncologist who is in the same building - he is part of a large group.  All of these physicians worked together at one time or another at the only NCI designated cancer center in my state.  Georgetown is a great facility (I lived in that area for 10 years and that is probably where I would have tried to go also), also NCI designated, but I found it equally important to have doctors I was confident in and had a good rapport with.  Are you concerned about the doctor's experience or their ability to take a team approach with you?  Also, I would see if you can do the expander placement at the same time as the BMX - otherwise that is an additional surgery.

bigshirley

You guys have definitely made me re-think my decision about treatment.  When they do an SNB, they take as few lymph nodes as possible, correct?  And they only take more if those nodes have cancer in them, right?  I still don't want them to take my pectoral muscles...I'm pretty adamant about that.  But I will try to keep more of an open mind about treatment beyond surgery, if necessary...and that is 100% due to the feedback I have received from this forum over the past 24 hours.

SpecialK

bigshirley - part of your insurance document that lists the injection and node xray is for the sentinel node.  The way my SNB worked is that a radioactive due was injected near the nipple.  This blue radioactive dye travels to the axillary node nearest the breast in the underarm.  That is the "sentinel" or first guarding node away from the breast.  It is the node that is most likely to have cancer cells in it if there has been a spread.  In surgery your surgeon will remove this node and it will be examined in the operating room by a pathologist.  If the pathologist does not see any cancer that is the only node that will be taken.  Nodes are contained in fat pockets, and often there can be more than one node in the same fat pocket - that is why you will see sometimes one or two, or a few, nodes removed for a SNB.  There is no way for the doc to know exactly how many nodes are in that pocket that is lit up by the tracer but they will certainly take as few as possible, and usually it is just one.  On your consent you can limit nodes to just the SNB.  I still feel that there is not a plan to take your pectoral muscle, it is just listed there in case they find something worse than imaging suggests.  Call your surgeon's office and speak to the surgical coordinator so you can put your mind to rest. 

bigshirley

Well...crap.  I called the surgeon's office, and the woman I need to talk too about all this isn't in yet.  I left a message, but these people haven't been very good about returning my calls.  At least the lady who answered the phone this time was actually very nice and attentive.  She said I could call back as often as I wanted, and that she would do everything she could to hunt down the woman that I am looking for.  So...now I wait.  Again.

Beesie

bigshirley, further to what SpecialK said, if you agree to the have the SNB, the surgeon should remove only the nodes that 'light up' with the blue dye.  That might just be one node or it could be 2 or 3.  On very rare occasions is it more.  All of the nodes that 'light up' are considered to be sentinel nodes.

Sometimes the sentinel nodes are sent to pathololgy for a quick preliminary review while the surgery is underway and if cancer is found in one or more of the sentinel nodes, sometimes the surgeon will proceed to remove more nodes during the surgery.  This is however considered to be a different, separate surgical procedure.  It's called an axillary node dissection.  So if you do not want the surgeon to go any further after removing the sentinel nodes, simply make sure that you do not sign the consent authorizing approval of an axillary node dissection.  In this way, the surgeon can do no more than an SNB - he can only remove nodes that 'light up' with the blue dye. 

While an SNB can't be done after the breast has been removed, an axillary node dissection can be done after a MX.  So there is no problem if you want to wait for the final pathology results on the SNB, and then, if there are any positive nodes, you can decide whether or not you want to go back for an axillary node dissection.  That's a very reasonable approach, if you want to try to limit the number of nodes that are removed. It's something that you should discuss with the surgeon. And make sure that the surgeon knows that you want to have as few nodes removed as possible. 

One futher point of clarification. While it is completely appropriate to authorize your surgeon to only do certain surgical procedures (authorizing an SNB but not an axillary node dissection, for example), I would not advise that you tell the surgeon the number of nodes that you will allow to be removed.  For example, don't say that you only want 1 node removed during the SNB, or that you want no more than X nodes to be removed in total. Telling the surgeon which surgical procedures you will authorize is fine; telling the surgeon how to do the surgical procedure is something different altogether.  If you authorize the SNB, let the surgeon do a correct SNB and remove however many nodes light up.  If you decide that you will authorize the surgeon to do an axillary node dissection, then allow him to do the procedure to the best of his ability and judgement; don't tie his hands by telling him how many nodes he can remove.  I don't think from your posts that you were planning to be that directive, but some of the earlier posts imply that this can be done and I really don't it that would be advisable. 

I hope that you are able to reach the woman that you are trying to talk to at your surgeon's office today. 

Anonymous

I agree with your sentiment re doc but will tell you that I had a great surgeon who was sure like I was that it was "just" dcis only to find that it wasn't dcis and a sentinel node biopsy was needed. So just be prepared to the need to be flexible.

Hortense

I went to Memorial Sloan Kettering and its policy is to take no more than 2 nodes in a SNB. They have found that it wasn't worth the risk of possibly causing Lymphedema by taking any more, that they would know what they needed to know with just the two. 

Of course, both of mine had micro cancer cells in them, so I will always wonder if the third and fourth ones might have had them too. Or, were they clear?