Why is it so hard for some to accept a choice not to recon?

I am 66 and my BS still is asking me if I am going to get reconstruction down the road.  My answer is still no...I had very large breasts and always wanted a reduction (of course not this way) but actually I just had BMX on 2/1 and everyone that has seen me with my camisole underneath my clothes and my little fiber boobs say I look so good and so thin and so much younger so I say no to anymore surgery unless it is absolutely necessary and this is not and my husband said he wouldn't do anything that didn't have to be done.  I just can't wait until that banding feeling around my chest goes away...it does ease up from time to timebut does anyone know how long it takes to go away. 

Wren, I am 4 months and a bit out, and the scar is still pretty red, but otherwise it looks much better than it did the first month.



To my surprise it also feels better. I was getting so frustrated with the numbness and iron bra feeling and thinking it would be chronic. I just went through rads, so the iron bra has made a return sometimes, but overall it is much, much better than it was even a few months ago. So hang in there.

Barbie, I had my BMX mid-September. At first it seemed like that duct tape feeling would never go away. Then it started easing up a little, giving me some breaks, and now it is pretty rare that I get it.



The docs do not buy my theory, but I have noticed that the feeling comes back whenever I have inflammation (from chemo, rads etc) and it seems to easy up if I take an anti-inflammatory and/or eat anti-inflammatory foods (raw garlic, hot peppers, sardines, greens).



Also, stretching helps. Get an appointment with a physical therapist who knows about breast cancer recovery and have him/her give you some exercises and a massage. My PT has been my angel all through treatment. Once a week I get to have someone spend an hour making me feel good, someone who doesn't poke needles in me and who has me leave her place feeling better not worse.

Seems in line with this topic and perhaps good news.  I saw my BS early in the month (22 mos post-BMX) and made a point to tell her that the choice for BMX was a good one and that I have not regretted for even a moment that I refused recon.  She asked if I was happy with my chest's appearance, which means flat with scars and I said absolutely.  I did say if I could do the Samantha from Bewitched nose twitch thing, with no surgery, no pain, and they would just be there and perfect in a size that matches my prosthestics, I would have considered it.  Otherwise, I am perfectly happy with what I have and that I absolutely made the right decisions.  I felt it was important for all the women who come after me that she gets this kind of feedback.

I saw the MO today for my regular 4 mos checkup.  I told him too that I had made the right decisions. FWIW, a big part of his practice is BC patients.  He shared with me that over a 1/3 of his patients who opted for recon were either very unhappy or felt it wasn't worth it.

I would never want the trend to go the other way, as I always want recon to be readily available to those that want it but hopefully we can turn the tide enough that the professionals come to realize that they need to accept and support whatever decisions we choose to make.

Barbara

secretgardn - well, I am like you, I did also go the reconstruction route w/TEs and learned the hard way. I am trying not to look back, just glad I am now flat and moving on with my life. I can tell you that the TE removal is a very simple surgery with an easy recovery - nothing at all like the original BMX. I had the first TE removed last August (due to problems), the 2nd one Jan. 27th this year because I was done with reconstruction. Both times I had a drain for less than a week that drained very little. The last surgery I did not even need a tylenol and was moving around and feeling good within a few days.

Momine and Deep2Deep - I am going to ask this morning if my breast surgeon would give me a prescription for physical therapy.  That sounds like a very good idea especially since I want to go back to work in April. This is uncomfortable,as you know...thanks for the heads up....and for all who have done no reconstruction....kuddos to you...I am one month post surgery and not unhappy at all...I were those camisoles with little poofs in them and everyone thinks I look so much thinner...I will get prothetic for those special occasions too...my daughter is getting married in June.  The genie bra...I am going to look those up...I have the AHH Bra - is that the same thing?????

I step into the Genie bra and pull it over my hips rather than pulling it over my head.  Of course I also bought it two sizes larger than the sizing they indicate.

I don't think a doctor has ever asked me how I feel about my appearance. If she did, I would describe unhappiness with my tummy bulge or my wrinkles. There was a young woman shadowing my nurse when my drain was removed. I wondered how many MX without reconstruction she had seen. My BS took my statement that I wasn't interested in recon at face value and didn't insist that I see a PS.

After my BMX without recon, the medical students and residents said that they had seen so few surgeries without recon that they didn't know what to look for and had never seen the type of bandaging/wrapping that I had.  I was surprised.  I just can't believe that every single patient goes that route, but apparently so.  My sister, who is a doctor, asked me whether the residents asked any questions or wanted to learn more about my decision as part of their education.  They did not.  I think if medical students of any type want to know more about our decisions, they could ask what factors went into our decision, not whether we are happy with it or not.

Velutha, what an interesting question. I gotta tell ya that so far I have not had any doctor, and I have been through a whole platoon at this point, show any interest in how I feel about anything, including my post-BMX appearance.



At the very beginning, I did see a psychiatrist, a friend of mine, in order to get a much needed script for xanax. My friend insisted on talking to me, which was very correct, and did also ask how I felt about the impending boob loss.



To try to answer your question, I think it would be really, really nice if doctors were more focused on being of service to their patients. So, I would really like a doctor to ask me what he/she can do for me and ask me what my priorities and expectations are. Cancer treatment, including the surgeries, involve so many different options, that I really think some discussion along these lines would be useful for all concerned.



For example, my BS never discussed with me what sort of scarring I expected or asked me my preferences. At the time, I didn't know to ask. As it turned out, he did a nice job, but I have seen a lot of MX pictures by now, and some doctors absolutely butcher their patients.

My daughter trained as a surgical tech. Her teacher thought that the first mx might be traumatic for her students, so she brought in a woman who had the surgery a few years ago. The woman described her feelings about her apearance, showed them what healed scars looked like, and after putting her bra with prosthesis and clothing back on hugged one of the guys, asking him if they felt real. Maybe some of the medical schools should do this for the docs also. It's been nice for me that my daughter has not been shocked by my surgeries.

Thanks for the help! 

As a future family doc, my concern is if you have dog ears, pain, or other reasons to be dissatisfied with your results, if you see me for a physical I want to raise the question in a general and brief way, so if you are bothered, or have been thinking about recon, I can figure out the best way to help you, whether it's that you don't need anything, or would benefit from PT, massage, a surgeon, etc.  Even if you are 10 years out, you should be asked if you are dissatisfied, just living with it, or if you're happy as is.  Ideally then I would document that, and hopefully no one else in my office would then pester you later if your answer was "I'm good, thanks."  I want to ask without you feeling, "Oh, here we go again." 

From a learning perspective, I've had no-recon patients, I like them because it's the best female cardiac exam ever (nothing in the way! You can hear everything!).  Double bonus if the patient actually has a good benign murmur.

 Sandra

Velutha:

This is a post from an old thread.  While it is bad enough, I have seen far worse.  Scan down to see the photo.  Everyone else, be aware it is frontal nudity and not pretty. 

http://community.breastcancer.org/forum/82/topic/695424?page=1

I would like to know why any woman should be subjected to this and how so-called "doctors" who did this, are still practicing medicine.  Perhaps you will see why some ask the question, am I being punished for not having a recon or are they trying to force me into one.  For those who know about my journey with removing The Mutants (dog ears), I am NOT talking about my own BS who really did a phenomenal job in spite of The Mutants.

The other thing I want to share with a future doc is what I have found to be one of the biggest disconnects between my thinking and those of the docs.  My experience is certainly not universal but I can assure you I am not the Lone Ranger in this.   When, as a patient, we say NO MORE SURGERY, we mean it, and often are willing to live with some pretty horrific results in order to avoid another anesthetic and more surgery.  Many of these patients probably never say a word because they are doing their best to suck it up and live with it.  The docs on the other hand, are so bloody non-chalant and just see another surgery, as no big deal.  No big deal to them - It's a big deal to us.   Yes, I finally caved when I could no longer live with strapping down The Mutants every single day of my life, could never wear prosthetics, could never let anyone hug me because they might feel them, and frankly couldn't stand to look at them.  Yes, I caved - minor surgery fix to the surgeon.   A VERY major deal to me that I had to go through this when I had tried so very hard to avoid it.  Huge disconnect between patient and doctors.

Barbara

I had a mastectomy on the right side and the surgeon set up an appt to see a plastic surgeon to discuss the options.  Plastic surgeon (male) was so condescending and telling me how most women feel this or that.  I looked right at him and told him, "excuse me, I AM a woman, don't tell me how women feel".  Each of us is different.

He just kept on, pushing for me to have expanders put in during the mx and I told him I was not interested.  As I was leaving he said he'd have the receptionist reschedule another appt in 6 weeks to "revisit" it.  By now I am po'd and asked him flat out "what part of NO don't you get".  The nurse in the room looked like she wanted to jump up on the table and cheer b/c he was so damn obnoxious (and I'm guessing to her this was just a job).  Next appt I told the surgeon he was making a HUGE mistake sending people to this new plastic surgeon.  He told me he'd actually had two other very similar complaints.  I also told him I felt it a mistake to push women to visit a plastic surgeon.  

The above were two male doctors and I called my GYN (female) to get her perspective.  She said if it were her, she'd not consider getting recon until I was at least 5 years out due to my staging, aggressiveness of my tumor, etc or at all.  She said she had more females making the same comment that the decision to not get recon didn't bother them but most males and male doctors seemed to think it was something we "had" to do.  As I told her, not one of my friends cares if I have a boob missing or not and she laughed and agreed. 

My Dr. asked me one time about reconstruction and I am an older single woman and all I saiwas the restaurant has closed and the playground is over so no need to talk about it..        And he never asked again and I'm very happy with my decision (for me). My friends and famiy never questioned it except one woman I worked with. First she couldn't understand why I would let them take my breasts and why I wouldn't want recon. I almost didn't believe her ow she was so adamant with me--I ad 2 lumps and 2 different types of cancer--so who would want to keep tem-there causing alot of trouble and I should ask for more.So everyone seems to have opinions on u'r own breasts--but my opinion counted and I made a good one. no more mammos. see there's always something good coming out of this. I know everyone has their own feelings bout their breasts and u should, And whatever choice u make u want to feel like it is the best choice.I was tired of carring them around anyway-gravity was taking a hold so I'm fine.