No reconstruction- Happy w/your decision?

Barbara (Starak), I work for the insurance company (gasp!)...nothing to do with payments, claims, or policy, but I can check it out prettily easily. I think I remember reading that if the gene test comes back positive, I'm covered for a double MX. And, I'd get them both removed and have no replacements - in a NY minute!

Thanks for adding that, Barbara. I want to further add that for most women, non-reconstruction is a process (though a less painful one than the process of reconstruction, which usually involves multiple surgeries). It took me quite a bit of trial and error until I found breast forms and bras that were comfortable for me. I am fortunate in that my insurance allows me new forms once a year, but I'm also careful to try out forms and return them if they aren't working out (most breast form manufacturers and retailers allow you to return forms for up to thirty days). I wear some forms in regular bras, others in mastectomy bras, others in pocketed camisoles. I've always put comfort first (even before my mastectomy) and wouldn't wear forms at all if I hadn't found comfortable ones.

Barbara

Well, surgery for the BMX no recon was on December 2nd, and although the drains won;t come out until Monday, I am happy I chose to be breast free. The biopsies were all clean and I am soooooo relieved.  I do have a questions, though.  My chest still feels heavy, like the boobs are still there.  Is that normal?

Murmist, that's totally normal as you heal. Wait until the nerves start regenerating and you get zapped!! Also, you might get phantom itches. Try scratching a breast that isn't there anymore! You will start to feel relief very soon, you're only 2 weeks out.

Lucy, they're coming up with fat grafting with a Brava process. Check it out.

I didn't have a choice, no immediate reconstruction for me. I still have my drains so that could be the reason I am having problems figuring out what to wear. Also, I am overweight, so my belly sticks out further than my chest. I have been wearing camis with the puffs, but they ride up high. After the bmx I am thinking I do not want more surgery and recovery time, but I do want boobs! Maybe dressing will be easier as I heal! I have a year to think about it anyways, so I do need to get used to my new body.

Hi Bak, try to give yourself a bit of a break.  It will get easier, I promise. As you heal and get used to the new configuration, try out some different foobs and bras and things, you will find something that works for you. Those drains are annoying as all get out.

Lisa, even though you don't see stitches, they are underneath your skin. The incision heals cleaner without the top skin having stitches in it. So be careful not to lift anything too heavy or twist awkwardly. Your incision will remind you that there are stitches!!! I'm 3 years out an to this day if I turn a certain way I get a tug!!

Hi crystalphm,

I don't know if you've had a chance to check out my website, BreastFree.org. In the Breast Forms section, I recommend breast forms I and other women have found comfortable. If you scroll down the page, you'll find detailed descriptions of both silicone and non-silicone forms. As far as my personal favorites, lately I've been wearing my ABC First Forms a lot, as well as the Amoena Leisure Forms with Comfort + (I like the weighted version, style 132--since they're foam, they're still very light, but the weight gives them just enough to keep them in place in even the lightest of bras). Both these forms are reviewed (with links) on my website. There are some nice lightweight silicone forms, too. I personally like the Anita Tritex (not too many shops carry them, though), the Amoena Energy, and the Silique Comfort Lite.

I want to weigh in on your posture question, too. I had slouchy posture before my BMX. My physical therapist really helped me learn to stand up straight, with shoulders back and down. At first I felt as if I were thrusting my chest forward, but I could see in the mirror that it didn't look that way -- it just looked as if I were standing up nice and straight. I've worked on it and feel as if standing that way de-emphasizes my abdomen. I try to hold my abs in, too, but that's hard!

Barbara

Secretgardn: I have spent the last 18 months trying to reconstruct...I started with BMX w/TE's 6/10, the prior radiated side had lots of problems which over a year later resulted in having the TE removed (after months of healing necrosis, the skin just opened up and tE was exposed). Since August I have had one side deconstructed, the other still in TE. This weekend I made the decision to give up the pursuit of reconstruction and to have the remaining TE removed as well. I don't know why it took me so long to get to this point but I'm really at peace about it. I'm ready to put cancer behind me and move on with my life! The recovery after having the TE removed was really pretty easy. It was an outpatient procedure that took about 45 minutes. I never even took a pain pill. I was back at work after about a week, although when I have the 2nd removed I am going to take 2 weeks as I felt I came back a little early. 

Thank all of you on this group/thread, I have spent many hours reading, looking at pictures, etc, of the experiences of those who decided not to reconstruct and it has been very helpful. 

good luck, jblcsw10 i think the smartest thing i did was remove the implants. the recovery was easy and i feel great and eveyrone asks me all the time if i lost weight when i am flat. I feel healthier and look better . hope this helps

barbe, i hear you about the breasts on the belly. I was shocked to see my big bellied figure without the large breasts. I am more uncomfortable about the big belly without boobs than being breastless. Now being breastless, i really enjoy!!!

Secret, I did not have any recon and I have that duct tape feeling still. In fact, I just posted about it elsewhere, because it is driving me nutty. So, I think your point about the discomfort not necessarily being from the TEs is probably a good one.

I also feel that my surgeon sugar-coated the recovery, which is why I am now trying to figure out how much of this discomfort is likely to be chronic, and if not chronic how long it needs to let up.

Barb yes the musle having been altered is a concern.



Right now I'm trying to accept that this is a temporary discomfort that I'll just have to deal with. Who knows, if I had chosen not to reconstruct, I might have always wondered about doing so. When deciding about surgery, it was more or less presented to me that reconstruction would be an important part of my recovery. Maybe so for some, and I'm happy for those for whom it's been successful.



At least now I'm pretty certain that implants will not be for me.



More important to me is comfort and mobility. And sleeping on my stomach!

Secretgardn - I had my expanders in for a month before PS started fills. Once the drains were removed, I felt much better, but I was still a little sore from the pocket work. I did end up feeling pretty good before the expansions started, no feeling of a tight band. I had a very painful expansion, and after the exchange surgery I had that tight band feeling. Not until I had my reconstruction undone (implants and capsules removed and muscle tacked back to the chest wall) in April this year, did I get relief from the tight band feeling. Even much of the numbness on the sides of the chest went away. I know this kind of thing varies from person to person, but I went from having chronic pain for two years to 99% pain free. My body did not like the expanders or implants from day one. I still wish I had never opted for the surgery, but I made a decision I thought was right at the time. It would have been a good choice if I had listened to my body and stopped the expansion when it was so painful. Good for you for listening to your body and doing what you feel is right for you. I wish you the best with your treatments.




jblcsw - I'm sorry you had such problems trying to reconstruct. It really is a tough road, and it's hard to know when to call it a day. I'm glad you feel at peace with your decision. Once I decided to deconstruct, it was such a relief. It takes such mental and emotional energy to keep in that fighting mode to make things work. At least after the 2nd expander is removed, you won't have to face any further surgeries, and you can take that fighting energy and put it toward moving on with your life. Good luck with your next surgery, and I hope all heals well and you can be on your way!

I've made my decision for a BMX because of my risk factors, including being a DES daughter.  12 years ago I took Tamoxifen (5 years) for LCIS.  But, all the surveillance couldn't prevent BC,   I had a lumpectomy in Oct for multifocal IDC and it also showed DCIS and LCIS   After the 1st Lumpectomy, I had an infection/cellulitis.  After 2 oral antibiotics, I had antibotiotics by IV for 10 days.  After the 2nd reincision to remove more suspicious areas, I had an allerigic reaction to something and took steroids for a week.  

Now, I am trying to decide on reconstruction or not.  I've already seen the PS and it can be done as a single stage reconstruction. The inplant (saline or silicone) can be added at the time of surgery and the size will be up to him. I'll be smaller cup size, which is fine.  But, I'm concerned about more infection, allergic reactions, or rejection, and that the implants will just not feel right.  I'm almost 60, overweight, and a worrier!   My husband is supportive, but wants me to be satisfied with my decision. 

Thanks for all your posts. The info has been very helpful. Any other insights or personal experiences would be appreciated.