Did your surgeon give you any trouble...?

KatherineNaomi

I hope this board is the right spot to ask this question. I'm a 34 year old mom of 4 and I've recently been diagnosed with DCIS and also with IDC which was found via an MRI guided biopsy. They're in different quadrants so lumpectomy is not an option. I go to see the surgeon this Thursday to discuss mastectomy. I'd really like to do a bilateral mastectomy with no reconstruction. I've given all the options a lot of thought and this is what gives me the most peace.

I'm worried that he may think a bilateral is overkill (I'm BRCA -). I really don't want to live with one breast, the anxiety of recurrence (I know it's still possible with bilat but less so), the asymmetry, it was a fluke that we found this cancer, don't want to take any chances with the other breast, want the option of going flat sometimes.

I also worry if I'll get any guff about not wanting reconstruction. While not having breasts will be life altering I'd much prefer that to putting a foreign object in my body or having additional surgery to my abdomen. I'm a small B now so I think finding a lightweight prosthesis shouldn't be too difficult. Plus, if I'm going to have fake breasts I'd rather I have something I can take off if it gets uncomfortable. It seems like so many woman my age have reconstruction but I feel like it's just not the right decision for me. If I change my mind down the road I can aways reconstruct then, right? 

Did anyone in a similar situation have any problem getting what they wanted from their surgeon? I love my surgeon and have no reason to think he's going to question me on my preferences. I just want to be prepared in case he does.

cornellalum

I told my surgeon that I wasn't interested in reconstruction.  He asked if I wanted to talk to a plastic surgeon, and when I said no thanks, he asked if I was sure.  When I said yes, he looked at my husband (don't ask me how much that ticked me off).  My husband ignored him (bless him!)  So the surgeon dropped it. 

You don't need to explain your choices to anyone, and I wouldn't try.  Just say you have decided against reconstruction.  The end.

BTW - my lightweight prostheses are working out great.

carcharm

I asked no begged for a bilateral and every surgeon/onc I saw said no. The surgical risk outweighed the benefits. The type of cancer I haver, er/pr-her 2+++ usually spreads distally quick rather than getting a new primary in the opposite breast. So, like you fear, I walk around with one breast. I have to say that I still, 1 year later, have alot of chest pain around the mastectomy rim. I hope you have better luck.

BoobsinaBox

KatherineNaomi,

I made a similar decision to yours.  My cancer was small on one side and the other side had suspicious spots (pre-cancerous condition it turned out) on the other side.  My surgeon said my bilat was overkill, and wanted to do a lump on the left and "wait and see" on the right.  I had no intention of going through all that again in 3-6 months!  He did what I wanted, but he didn't do a good job, leaving more tissue on the right side than he should have, and making an ugly and painful mess of the left side.  If I had it to do over, I would go to someone else who was willing to follow my wishes and not "try to make me regret it", which is how my surgeon proceeded.  If your surgeon agrees, then fine.  If not, or even if he pushes you, I would suggest a second opinion.

Blessings on your journey.  I am 4 years out and my only regret is that I didn't go somewhere else to have it done, when the surgeon argued with me.  I was in a hurry, because my cancer was Grade 3 (fast growing), and I wanted it out.  I'd have been better off going almost anywhere else in this city!

Dawn 

Leah_S

KatherineNaomi, I agree that you should find a surgeon who agrees with you, not just reluctantly puts up with your request. So I guess you should just see how your surgeon reacts to what you say. It might help if you write down your reasons so when you see him you don't forget anything you want to say.

Dawn, have you thought of seeing if a plastic surgeon could fix up the awful mess your surgeon left? I don't know a lot about insurance in the US but from what I've read here, if recon is covered so scar revision should be also.

Best of luck to both of you.

Leah

cbm

Hi, Katherine Naomi; I've written about this a few times on this board--I was determined to have both removed for about ten reasons, not the least of which was that they had been painful in and of themselves for my entire adult life, and caused me back problems, and one of them had effectively concealed a tumor through at least five mammograms (and I figured if one could do that so could the other).  Mine were large, so a lightweight prosthesis for only one was not an option I could realistically expect.  I have a thing about symmetry, and that was really important to me.  I wanted to know going in exactly what I was going have coming out (of surgery).  And so on and so on--I knew what I wanted and reconstruction was not on my immediate priority list.

I haven't had reconstruction yet, but I am planning to have the least invasive and risky process that will get me a little shape.  My ps has suggested that he can do anything from a 12 hour double DIEP to a slight rearrangement of the remaining tissue.  Now that I am helathy, I can make an experienced informed decision.  The bad thing is that I'm not in the mood to go back into recovery mode.  I think the DIEP is off the table.

My breast surgeon didn't want to do any mastectomy--he wanted to do a lumpectomy.  Short of that, he wanted to do a single mastectomy and port placement.  Adding the second mastectomy raises the port, and increases both time in surgery and the risk of infection that can delay the start of chemo, which I knew in advance I was going to have to have.  I also know that they all thought I was going to have to have rads, as the node that was in evidence was about 2cm.  It turned out to be the only one, but that was a big surprise.  So there are some reasonable points to consider. 

You really can decide on recon later, but you might want to have the consult ahead of the surgery.  It helped me enormously to manage my expectations and allow the surgeon to consult so that your options are preserved.  In my case, the surgeon left enough skin and tissue in the vicinity that I have a few more options than I might otherwise have been given.  

Warmly, with hugs,

Cathy 

rls1231

I was 37, married with 2 little ones when my DCIS was diagnosed.  I had a tremendous family history and assumed I was BRACA2 + because all my family is!  Did the bilateral and initially said to my Breast Surgeon that I wanted no immediate reconstruction.  She instantly said -- you HAVE TO!!  You will become depressed, and your self- esteem will be diminished... you are too young... yada yada....

 9 years later- I am sittling here with 400 cc silicone implants.  I won't go into details but have tremendous pain in the neck and shoulder with proven EMG myopathy of the serratus anterior muscle (used to cover the implant). 

Follow you heart on this one... and yes - you can always do it later.   My surgeon convinced me that immediate was so much easier and better result... but I'm not certain.  Yes - aesthetically in swim suits and strapless dresses the implants have served me--- but they have never been comfortable in my body and I believe have contributed to significant deterioration of my neck and shoulder (perhaps because of the muscle damage).  I'm planning on having them removed this year - and am now being asked to consider a flap procedure.  Not sure what I'll do with that one.

Best of luck - and as I said...Follow your heart!

Robyn 

Houndmommy

I had a unilateral mx May 17, 2010 w/o reconstruction (things happened fast and not enough time to find a PS nor really think about what to do with the healthy breast).  My plan was to have PS later and possibly remove the healthy breast at that time.  I am now rethinking the PS because I have to have rads and I'm concerned about some other issues.  So, now I wish I had had both breasts removed - I hate having just one.  I think it is so much more difficult than having none.  I am also a small B.  Anyway, I hope your surgeon will work with you.  Good luck!

BoobsinaBox

Leah,

Thanks for your concern for me.  I  would not risk another surgery because the area that is botched is on the side near the axillary space.  I had terrible pain due to damage to the brachial plexus nerve bundle, which 3 months of PT and two years of other treatments finally made bearable, and I dare not risk upsetting that again.  I have learned to live with lots of numbness, and some unattractive results.  I just hope no one else has to go through that.  I could not have lived for long with the pain I was in for many weeks.  Thanks again for caring.  Now back to the main topic!

Dawn 

doingbetter

Like Robyn said, follow your heart.  I strongly believe in doing what is right for you. I did 10 years ago with two young children and a mastectomy for DCIS (second time in same breast).  Never regretted my decision and many times got the wide-eyed "I can't believe you're not doing reconstruction" look from my surgeon and other drs.  It's really never been an issue for me or my husband (not that I'd do it to please him anyway...).  I did, just to feel that I made a well-informed decision, consult with a couple of PS's.  Now I'm going through it again with IDC in my other breast. Will follow the same route. I did see a PS again and know that if it ever bothers me enough, I can go back and do the reconstruction later. I am/was 34B, so other than a minor inconvience for dressing, prosthesis has worked fine for me.  I will say that other than the surprise expressed by my woman surgeon from last time, neither she nor my current surgeon ever questioned my desire for the mastectomies and appreciate that we've thought it out and reached our own decision.

LoriL

Katherine- I completely understand how you feel because I had some of the exact same thoughts. I had very dense small breasts and my cancer was not visible on either mammogram or MRI (I found the mass myself). That, coupled with the fact that ILC has a higher incidence of being bilateral, helped me come to the conclusion that bilat mast was the best route to go. And, no implants or reconstruction as I didn't want further surgery. I am VERY happy with my decision- I'm symmetrical, can go flat if I want (which is really great on these hot summer days!), and have set of small prosthesis if I choose to wear them. My surgeon was very supportive of my decision and told me point blank that if I was his wife he would recommend the same thing. My radiation oncologist and medical oncologist both told me before the surgery that they recommended a lumpectomy, but after surgery they didn't give me any grief about it other than being surprised by my decision.

Best wishes to you!

lovemygarden

KatherineNaomi, I will be blunt: If your surgeon does not respect you enough as a person/patient to respect your decision of a BMX/no recon, then take the time to find another surgeon. You do not want the added stress of feeling that you're in an "adversarial" relationship with your surgeon; it will erode your overall confidence in him or her.

My surgeon respected my decisions (same as yours are) with absolutely no pressure or arguments. Btw, I had a female surgeon. My oncologist is also female, and also respects my treatment decisions. IMHO the doctor's gender can sometimes make a difference in doctor/patient attitude. I did not choose either of them on the basis of gender; it just worked out that way. On the other hand I had a fabulous anesthesiologist, and an excellent vascular surgeon (for my port) and both were male. However, my most "critical" providers (BS and onc) are both females. 

barbe1958

I have been doubly flat for over a year and a half and am very satisfied by my decision. You can change your mind later, yes. It is not life-altering to be flat, because you were flat once years ago...

I wear almost all the clothes I used to except ones with darts. It is wonderful to feel soft fabric against my chest and the loss of heavy 42D's has helped my back and neck tremendously! You will be numb on the mast site whether you do recon or not. Not all nerves regenerate.

I walk taller and look slimmer without my wall of boobs. People look at me and wonder but they can't quite put their finger on it! I've worked with customers for months and then sometimes something is said and it comes out and they are stunned! They hadn't noticed I was dead flat! No one really cares as much about your chest as you do.

Good luck in your decision.

lovemygarden

And also don't forget how much more comfortable it is to be boobless during 95-degree, 80%-humidity weather!

Kim09

I had a very good experience with my surgeon.  He never tried to talk me out of my decision but did present all the options.  I have prostethis for when I go to work but other than that I go flat.  Like lovemygarden says it is so much more comfortable being boobless in the hot weather.

3jaysmom

Katherine Naomi, i wanted a bi lateral masectomy as soon as i found out one was bad. my surgeon, the 2nd opinion, same as 1st, wanted 2 do a lumpectomy, i fought tooth and nail, had zillions of tests, etc. one of them showed "suspicious" on my "non cancerous" breast..finally, he agreed to do both IF i agreed to get a PS opinion on recon... the PS said no way, i have MANY other health problems..the surgeon still was dragging his feet. so, my case worker from my ins. told me to put my request for a double masectomy in writing.. not a letter, a fax. i did, and wow ! my surgeon called me really ticked !! but, he did a d blm the next monday.. i was large a 44 dd, he wanted to do one! thats just crazi!! its so nice, if u gotta do it, and i did, i have lightweight prosthesis in two different sizes, to go with what outfit i want... i dint get to skip chemo, or als, but its all on what kinda cancer u have, for that.. and oh yeah.. the something suspisious turned out to be even earlier cancer.. so thank God i did it. if your isnt too aggressive, find another dr. who is more ameneable to what you want.. its youjr body... and , my port wasnt put in until all my surgery from the breast removal was healed..and ps. said i had up to a year minimum to decide later...Good luck, try to keep your wits about you, and get done what you think is best for you, not the surgeon..  light and love   3jaysmom

iodine

I chose another route than the one you want right now.

I would offer this: If you stay with this surgeon, please have his staff contact your ins. co. for preapproval of the bilat.  I personally know a surgeon who spent a great deal of his, his staff's and his patient's time trying to get the second one paid for.  Ins. co was fine with one but not two.

I ditto the PS consult, too.  He may have pics of bilat with no recon that you can see.  Knowledge is power. Just to make sure you have all you need for an informed decision. 

 I have a friend who had bilat. Unfortunately, she's a woman with curves and it makes her tummy look larger than it is.  She had no choice since she had no insurance and couldn't afford the recon.  Have another who had huge family hx and finally got tired of the worry and had bilat with recon.  Just a few more stories for your review.

Just remember, it IS your decision and there are many who will agree/disagree but in the final analysis, you are the one to look in the mirror each day, not anyone else.  oh, plus all the medical stuff, too.   LOL

lovemygarden

I had my port put in at the same time as the Bi-lat .... why go through two separate surgical procedures when you're going to be under anesthesia for the first one anyway?

 Here is a tip: Tell your surgeon that you want the pathology lab to test for HER2 on the preliminary (pre-surgery) core biopsy, which I assume will be done, as well as for ER and PR receptors. Many surgeons don't bother to test for HER2 until they have the actual tumor tissue after surgery, but there's no reason why it can't be done on the earlier sample. (if the lab has already tested for ER/PR, no worries, they keep the biopsy sample long enough to be able to go back and do additional testing later if wanted)

The advantage to knowing your HER2 status before surgery? You will then know if you will have to be on a year of Herceptin, and if that's the case you can have the port put in at the same time as your breast surgery. Trust me, with a year of chemo you absolutely will want a port! Makes the chemo routine virtually painless and saves your arm veins as well.

If you get the port along with the surgery, any lingering soreness from the port install will be all gone by the time you start chemo.

p.s.- another tip, ask for a "PowerPort", it's the best kind (easiest for the onc nurses to access)

KatherineNaomi

Phew! Just had an excellent appointment with my surgeon. He has no problem with anything I've requested. I was so stressed about everything before hand. It looks like I'm stage 1, grade 1, ER/PR+, HER2-. Lymph nodes look good on ultrasound but of course we won't know for sure until after surgery. Surgery is scheduled for July 20th. I feel so relieved that we're moving forward and I'll soon be kicking cancer's butt!!! Thank you so much for your help!!

BoobsinaBox

So happy for you!  Hope all goes very smoothly!

Dawn 

eileen1955

Surgeons like statistics; like all good scientists. So they totally believe that lumpectomy plus radiation equals mastectomy.     Some of them get frustrated with a women like me who knows    I'll be a happy, more satisfied human being if I  lose both breasts.   I hate the painful yealy mammo of the radiated side: I have to take morpine so I don't collapse from the pain.  I am just fine with mammo on the other side.                 And I HATE losing a few days of my life worrying about a suspicious finding.        "Waking up with my breasts every day" is really not an important part of my life.    I really trust myself on this one. I have met with 3 ps at the insistence of my bs.  The plan would be very complicated for me, and the best (most expensive) doctor warned me that I should expect setbacks, wound issues, infections, ya-da, ya-da.                 I do not want to enter a voyage with pysical pain.    I have been in pain most of my life due to a congential vascular disorder.   Now that the vascular situation has been fixed (after 9 sugeries) I am ready to enjoy walks while feeling the warmth of sunshine on my back.            I have earned to right to make my decision.    I do not feel it is necessarily a gender bias among male docs; one female BS gave me a very hard time about  deferring PS.    "I have never seen a woman your age not opt for ps"        That is a lie b/c she worked in the inner city and those women statistically do not go for PS. They have more on their plate than they can handle already.            This may sound paranoid but I sometimes wonder if there is some "sweatheart" deal between the bs and a specific ps (who does not accept insurance, so they can charge what they want)      Each bs I met had the same agenda: for me to conclude that their ps was the best and then spend $20K out of pocket.                   Good topic for a thread. thanks

lovemygarden

What I honestly cannot understand (and which irks me no end) is how so many patients seem to accept their doctor's opinion without question, or even if they do question or are uneasy with the recommendation they seem unable to outright refuse what a doctor tells them to do. It's as if they relinquish their right to make the final decision when faced with a white coat across the table. I do get the whole under-stress, scared-witless thing because I've been there too... but never for one minute in my adult life have I ever forgotten that in all medical matters, no matter how big or small, the decision to "do or not do" each particular thing always rests with Me The Patient.

The old saying "He who has the gold makes the rules" applies here as elsewhere. I'm the gal with the gold = I'm the one writing the check to the doctor. (Literally this time, as I have no medical insurance and every penny comes out of my pocket, but even when I did have insurance I was the one paying the premiums even if the bigger checks the doctors got came from the insurance carrier. It's the same origin in the end.) In other words when I go to a medical provider I am "hiring" them for their professional opinion (and expertise, should I decide to use them) and therefore I am the boss in this situation... the buck stops here...it's I who have the final say on what is or isn't done to my body.

So when I hear or read comments like "I met with 3 PS at the insistence of the BS" or "my oncologist refused to give me the chemo drug I wanted" (italics mine) etc etc, it does boggle my mind a bit. Are we not adults, capable of making our own decisions when we have the power to do so? Is there some reason we cannot say "Doctor, I understand your reasons but I am not going to see a plastic surgeon, because I am not going to have reconstruction"?  At various times I have refused a specific diagnostic test, medication, and/or procedure that a doctor thought I should have, because for whatever reason applied, I did not want it. No doctor in the world can force a patient to do anything, unless the patient allows it. (and has the ability to make a conscious choice of course) Yes I've run into a few doctors who used the phrase "You have to" when talking to me. That ended the appointment as far as I was concerned; I would (barely) keep my temper, give a phony smile while saying "I will get back to you on that", shake hands, pay the bill at the desk, walk out the door, and never go back. 

The ironic thing is that I am always in other situations the most nonconfrontational person you'd ever meet. During childhood, adolescence, and for decades afterward I was a meek little doormat "mouse"! But when it came to anything medical related I have never once given up one iota of my right to Just Say No if anything is proposed to me that I am not 100% comfortable with doing. Why doesn't every patient realize that this is their right too?

Sorry for the rant, off my soapbox now.

encoremom

I just saw this topic and had to post.  For those of you on the East Coast, I highly recommend the surgeons at Johns Hopkins.  My cancer was found in another top notch teaching hospital and I had my biopsy there.  The doctors at the first place were very good but wanted me to have a lumpectomy and made me personally feel bad when I told them that is not what I wanted.  I went to Hopkins to get a second opinion and boy was I impressed.  The surgeon layed out all the options and told me it was my decision, period.  I opted for a bilateral masectomy and the surgeons there couldn't have been more supportive of my decision.  It is obvious that they understand that you should be in control of what you want and they are there to provide guidance and expertise....not make the decisions for you. 

encoremom

I just saw this topic and had to post.  For those of you on the East Coast, I highly recommend the surgeons at Johns Hopkins.  My cancer was found in another top notch teaching hospital and I had my biopsy there.  The doctors at the first place were very good but wanted me to have a lumpectomy and made me personally feel bad when I told them that is not what I wanted.  I went to Hopkins to get a second opinion and boy was I impressed.  The Hopkins surgeon layed out all the options and told me it was my decision, period.  I opted for a bilateral masectomy and the surgeons there couldn't have been more supportive of my decision.  It is obvious that they understand that you should be in control of what you want and they are there to provide guidance and expertise....not make the decisions for you. 

eileen1955

lovemygarden; let me explain the context of the comment "I saw 3 PS at the insistence of my BS".    I was looking to have a PBM and was open to the possibility of hearing about a PS option that might work for me.      The bs mentioned "immediate breast implants w/o TEs" and I thought maybe I might do that.               Turned out that all 3 ps did not feel I was a candidate for for that kind of PS at all.

So, in this case, I respect that my BS did not want to do bpm w/o me considering options for ps.  I like to be an informed consumer.        So it was okay with me, tho I probably did not frame it that way in my post.   sometimes I leave out details for the sake of brevity.             I did "fire" a bs for not ordering me an annual MRI that I knew I needed.         

It's a balancing act. the docs don't get to push me around but I am open to new info.   er

sespebadger

Through this BC journey I've found that when it comes to reconstruction, we need to do what feels right to us. And that may be different than what feels right to others. Doctors should never assume they know how we feel or what will make us happy.They should offer their professional knowledge and let us decide. We all need to make our own decisions as we are all individuals

When I was given my BC disagnosis both my family doc and BS talked about reconstruction as if everyone did it (and I believe that statistically most women do). At first I assumed I would too. But because my lumpectomy didn't get all the cancer, and I got 6 mos of chemo before my mastectomy, I had time to think about it more. With family history of BC, stage 3 and rads, and disliking being a patient, I began to lean heavily to BMX no recon.  

.My woman oncologist gave me the name of a PS even when I told her I didn't think I wanted recon. Her opinion was that recon made clothes fit better. When my radiologist asked me what I was going to do and I said "no recon" he told me enthusiastically about "the biggest implants he ever saw" and how he had successfully done radiation on the woman who had them. He also told me he didn't want me to regret my choice later. I really didn't feel it was his place to give me advice on this subject....I hadn't asked. I DID tell my BS I was considering BMX no recon and I DID ask what he thought about recon and he said, "If it was my wife, I wouldn't recommend it." My oldest brother told me he didn't want me to be sad in the future if I didn't get recon. He hadn't realized recon after MX is not the same as breast enhancement. I DID appreciate his big brotherly concern.  

I never did go talk to a PS about alternatives. I am happy with my choice. I'm one week out from surgery and in clothes I look fine. I'm a bit sad to loose my beautiful breasts, but I know I can be happy without them. I hope they have better treatment in the future so this surgery isn't necessary, but in the meantime, I plan to enjoy life just as much in the future as I did in the past. I hope all other BC ladies will too.

dreaming

I told my doctors I wanted the most aggressive treatment possible, I wanted a mastectomy, during which they found a large invasive tumor, that did not show in any test and could not be felt.

I am glad I did not accept a lumpectomy.

I "fired"my oncologist and got one that went along with me, about getting chemo, she was against.

 I am glad with my choices.

I had reconstruction after a year, mainly because the prosthesis was too heavy, got smaller breasts.

hymil

KatherineNaomi Thinking of you tomorrow and your surgery. Let us know how it goes.

LoveMyGarden, couldn't have put it better, your message needs to be inscribed on some delicate part of every jumped-up doctor who thinks they are in charge.

Uh and maybe more of us do need to go talk to the PS and give them our honest views on this extra surgery and pain etc.. If they only talk to women who want a recon, then it's not surprising if they think every woman wants one...

Slightly different perspsective from this side of the pond, maybe due to medical care funding from government rather than insurers... i learnt last week that the UK stats for recon after mastectomy is much lower than in the US, they have to discuss it but there are issues with waiting lists etc and also it is not easy to get a second side prophylactic unless you have genetic considerations. I have to conclude there are far more uniboobers over here than is immediately obvious. I would go bilat-flat at the drop of a hat and throw the fooby out the window if I could. (Now that really would surprise the neighbours!)

Erica3681

KatherineNaomi,

Best of luck with your surgery tomorrow. I'm glad your surgeon was amenable to all your requests. I hope everything goes extremely well.

hymil,

That's so interesting about the statistics for recon in the UK. I really think that when many American doctors (not all) tell a patient she needs a mastectomy, they present it as a matter of course that she will also have reconstruction. These doctors seem to assume that a woman's psychological well-being depends on having reconstruction. While I'm glad women have so many options these days, I do wish doctors in the U.S. would also present non-reconstruction as a positive alternative. It sounds as if in the UK doctors discuss reconstruction but don't push it as hard as they do here in the U.S.

The prophylactic issue is a whole other matter. I had a lumpectomy and rads for bc in my right breast, then three years later was diagnosed with extensive DCIS in my left breast, for which a mastectomy was recommended. I decided to have both breasts removed and all my doctors (breast surgeon, oncologist, and radiation oncologist) supported that decision (even though I tested BRCA-). I wonder if docs on your side of the pond would have recommended unilateral or bilateral in my case . . .

KatherineNaomi

Thank you for thinking of me! Surgery went very well. After 2 days in the hospital I'm very happy to be home. I missed my kids and my bed and I think healing will be much more enjoyable here. Very little pain to speak of and nothing that isn't tolerable. So glad to have this board for answers and support. I honestly don't know what I'd do without it!!

barbe1958

Just remember to take it easy, you have the right to sleep and nap and rest and read in bed....