All About Gummies

Okay, I think I finally climbed my peak today. I decided to try on my cleavage-dependant clothes today and am quite happy with the results. I also just added a swim-suit edition photo on the other site.

I can see that the implants are larger than my natural breasts in this swim suit shot because it's pulling at the bottom of the cleavage. Oh well, I guess a new bathing suit is in my future. The dresses looked very much like they did pre mastectomy. So this has really brought a smile to my face and I feel like I have moved past the valley of gloom and sadness.

Deborah, not sure if you read this thread but you are very right about bra sizing. I found this website that actually had a video of what bras should and should not look like. I can tell you that I have never worn the right size bra! I can hardly wait to get back to the US and go bra shopping at Nordstroms. In the meantime, I will have to buy a couple to wear until I can get there. I will start to read the bra thread because I'm completely clueless as to what I should be wearing with implants that won't push them in or pull them out or whatever else they aren't supposed to do. Definitely a learning curve!!

Gemini -- it can certainly happen!  Lots of women end up exchanging one set of implants for another set, often within a year's time, due to being unhapy with the results for one reason or another; your doctor would have to get approval from insurance... but it seems to happen a lot so I gather it CAN be covered by insurance.  The women I've encountered on this site who have had different implants have been: women who switched from saline to silicone (because they wanted softer and less ripples); women who switched from silicone to saline (because they wanted bigger than what silicone can be); women who switched from gummies to silicone rounds (because they found the gummies too firm); and probably there have been some who have switched to gummies from rounds, though to be honest I can't think of any at the momen.  

Did you ask the PS in your previous city this question you asked us and what did he/she say? 

I think you have to do what makes sense for YOU.  But here's my question: assuming that your gummy PS thinks you could go from round silicone to gummy at a later date (as opposed to starting now with anatomical saline... which I guess is what you mean by shaped)... why not let the St L PS give you what he/she thinks is the BEST they can do (short of a gummy) and see if you like it?  You might find you DO like regular silicone (for example)... and not want to switch to a gummy later.

That said, I will tell you in case no one else has: you don't get implants for life... they have a shelf life of around 10 - 15 years... so an exchange is in your future regardless (just a matter of when). 

Lilah, I I'm just trying to understand something you said. Are you saying that if, for example, 10 years had already passed would we be able to get gummies again since we currently have them? Also, just curious, how do you know when you've reached the expiration date of your gummies? Do they look or feel different? Does an MRI determine this?

My PS told me they recommend (even for the gummy) that you get an MRI every 2 or 3 years.  The only way to tell if silicone has failed is by MRI as I understand it.

Mantra -- yes I assume we would be able to replace with gummies when it is time to replace... and it could last 20 years too so it's not clear (as Claire pointed out) exactly how long they last.  But they are not permanent... they do eventually need to be replaced.

Claire -- that is very interesting.  I guess that's why I have not heard of women going from round to gummy.  But I think that means that if Gemini implants an anatomical shaped saline (which I believe exists, no?) then she would be ok going for the gummy later.  Anyway let us know what your PS (my PS too hehe!) says about that when you see her!  I have to agree the requirement that you live in the city where you get the gummy is one I have not heard of... and certainly Sloan Kettering doesn't require that!  I live in a different state and I went there and got a gummy. 

I'm using Dr. Andrea Pusic at Sloan. I live in CT over 100 miles from Sloan which is about a 2 1/2hour commute. I hadn't heard of the 90 mile rule. And I'm getting sadder about not being able to replace with a gummy. I'm wondering if you've only had the round for 4 months, if it makes a difference?

See what the doctor says.

Gemini - Given this information that you cannot go from rounds to gummies, that leaves you with two choices: get anatomical salines (they can be firmer than gummies, as I understand it) or find a doctor who will give you gummies if that is what you feel you MUST have.  (Third choice is get smooth rounds and be done with it -- and frankly that is NOT a bad choice).  I have to say that I, like Claire, have never heard of this distance rule.  It's too bad the doctor in Washington can't find his/her way to working with you long distance.  I had my follow up with my PS about a week after exchange... then 6 weeks... then 3 months.  This is what is normal (I think) for any exchange surgery.  As far as it being the gummy study... I had to fill out a bunch of forms and I think once a year I have to go back and answer some questions.  It's late in the trial phase at this point and really they are just collecting data now.  Perhaps the reason for the rule, though (now that I think about it), has to do with the fact that one tends to fly for longer distances... and there might be concern about flying soon after surgery?  I wonder what would happen if you were able to arrange to be in town (in Washington) for a week or so following exchange?  Would that change things for your doctor there?

Sweetie -- so true about the future!  And as I understand it ALL implants degrade with time just from being in our bodies.  Saline implants are contained within a silicone exterior so it's the same deal with all forms of implant.  I should think your PS is right that it CAN be done (round to gummy)... and probably it just depends on the individual and how the capsule forms.  But you know I had a TE that was round... and lived with that for several months... and then at exchange the doctor removes the capsule and puts the implant in (whereupon a new capsule begins forming).... so it does make sense to me that it's POSSIBLE to go from round to gummy... especially if after a short time.

Thanks for all the great comment.

Jerusha: When you say "you would not take a risk on how the gummies feel" what do you mean? You weren't happy going from silicone to the gummies following your exchange? 

 This distance issue is confusing. I spoke to Allegan's clinical trial director last week and she stated emphatically the "no more than 1 hour away" rule. 

I wonder if it's true what others have said--that some doctors have a quota of 410's they can use, and when they get close they have to back off? Anyway, I"ll try to find out more tomorrow and post here. Thanks!

Sharon -- hmm... you know what you are right it's the TEs not the implants and I got it wrong.  Sorry.  That said, the original reason I mentioned it was that Mantra was worried about her gummies falling out of their pocket.  I think that in the first several weeks post-exchange you DO have to be careful... but once the capsule has had a chance to fully form and the tissue to adhere to the implant (textured means the implant adheres) then it's not likely though, of course, it's true that a shift CAN happen with the anatomicals that is not desireable.  I wonder if that is a bigger risk in the first several weeks?

I can only imagine what you are going through... it does sound rare indeed but it does happen (they always say 1 - 3%, don't they, after double MX... but who ever thinks they will fall into that tiny pool?  I hope and pray that whatever course of treatment you pursue it will truly mean the end of BC for you!  No more BC for Sharon!  No more!

Jerusha -- I know you are suffering and had a bad time with MSKCC but I did not for what it's worth.  Especially with my PS.  Also I am not completely convinced that the pain you feel is from the gummies.  It sounds like trunkal LE. 

Gemini -- that is just bizarre about the distance rule.  Maybe there are different phases of the study with different rules.  As for quotas -- I believe they all have a limited access but the limit varies.  A place like MSKCC -- being a large research hospital -- has got more units at its disposal than, say, a small practice.  That said, I do recall that when I was scheduling my surgery I asked the staff about this issue and they did say their quota is a monthly quota.  I never asked how many... but got the impression that there were rarely issues with this and, even if there were, they would simply reschedule me if need be.  That did not happen.

Lilah, I know you had a good experience at MSKCC. Others have also, particularly with your PS. And I know that you are happy with your gummy... That is all very wonderful!  I think it is great to share that.  But I do think that women need to hear about the possibilities of bad care and undesirable outcomes. Its not sour grapes...it is honest reporting and I think that we all need all of the information we can get ... positive and negative so that we can weigh our options. Sometimes the negative reports come at a bad time, like just when we think we have made up our minds to go a certain route. On this sort of forum, its bound to be bad timing for someone. Hopefully it will be just the right time for someone else to use the info constructively to help with choices. Before I got my gummies I was advised, actually right here at bco, that  more than half of women are unhappy with them. I felt so persuaded by the merits that I convinced myself that I would not be in that half. I wish I had read more personal stories from women who were unhappy with them...maybe I would have been more able to imagine that I might fall into that group. (Maybe not, I'm pretty hardheaded...) It is hard for me to be a harbinger of bad outcome... I usually hold back as I don't want to be a party pooper. But I honestly believe that we don't do each other any favors to sugar-coat or be less than honest. 

BTW, my gripes with MSKCC, the poor quality of nursing and medical care are a separate issue from my feelings about how I like my gummies. My complaint with the gummies has to do with the way in which they feel like TE's (a description we can all relate to...) -- not to the touch, but on the "inside". Hard, unyielding. And the way they feel "stuck" to my insides -- their adherant quality. Actually, my PS did a good job -- in terms of how they look. How they feel is certainly not his fault. Despite doing a competent job, I still believe -- as a medical professional -- that my care at MSKCC was poor. Perhaps I know "too much" from an insider point of view or my standards are too high. The other problems that you refer to that I have been having with LE in my hand (not truncal) are completely beside the point, here. Bad luck probably, or bad genes, or idiosyncratic response to the implant or possibly bad surgical technique (as some now surmise).

Anyhow, it's a wonderful thing here, that women can get ALL of the versions of "the real story", because there are many... and we can help each other along as we make our choices.

Jerusha, I agree that sharing of stories is an extremely important part of coming here. I liken it to reading reviews on restaurants. If there is one review and the restaurant is given a 10 out of 10, I figure it's likely the owner who has written the review. However, if there are 30 reviews, and it is given an 9 out of 10, then that's the restaurant I will go to; not the 10 out of 10 with one review. And these threads give a compilation of a wide variety of people and I think that's important. In my case, part of my research included reading about gummies from people who are my size since I imagine women with larger breasts might have a different opinion.

That said, I think some of the tightness or "inside" feelings are to do with the surgeon. I can tell you from personal experience, my first TE done by a different surgeon was THE MOST PAINFUL experience. It hurt all the time. Breathing was painful and each fill was excruitiating. I actually passed out from the pain. Fast forward, I found a new PS, she removed my TE and put in two new expanders. ZERO pain. Zippo. The fills were painless. I basically felt nothing. So I'm the same person, with TE and had two completely opposite experiences.

I think we all need to take everything with a grain of salt and accept that each of our experiences are going to be different; for whatever reason. Whenever I see a new doc, I always check them out of ratemd.com. Many months ago I had to see a urologist. His ratings were horrible but I kept thinking . . . this Dr. has been referred to me by my surgeon whom I trust. He works at the top cancer centre. So I decided to go ahead with the appointment. OMG . . . I loved him. He was the exact opposite of what was posted. I actually verified his first and middle name with his receptionist because I thought perhaps this was the son or some other relative. He was probably the best Dr. I have ever gone to . . . patient, knowledgeable, personable and spent a ton of time with me. My experience was superior but that doesn't mean the other patients were wrong. It was just their opinion based on their own experience.

I've heard there are some differences. I think the Allergan is considered a true cohesive gel. But honestly, there are many other woman much more knowledgeable in this than I am and I'm sure they will put in their two cents very soon.

I've been skimming through most of the posts and trying to finish a project off at the same time that's due this week. Am I understanding it that you are considering getting a different implant and then when you move back to the orginal area,you will exchange them out for gummies? I can't say for sure about this type of surgery but I do know that having prior surgery in the same area creates risks caused by scar tissue etc. Something to think about before making a decision.

Mantra -- I think you are so right about the tightness and the "inside feelings". There are so many variables, and what I find intolerable, someone else might not mind at all. But when you control at least one variable by comparing YOU to YOU... same TE, same you, different surgeon...it is very informative. Too bad surgeon and outcome are never actually studied to understand what techniques lead to what outcomes. Wouldn't happen in a gazillion years!! But that is what we do here by sharing our anecdotal/individual experience. 

Sharon-I'm sorry your having to deal with this DCIS issue. I know your in good hands and you will come to the right decision on how to treat it. I did see your new pics and you look fabulous. Hang in there, it's all going to be alright. big hugs.

Lilah- so well said! You helped me a lot in deciding which way I should go. My final decision in choosing rounds over gummies had to do  with what I felt was most important to me. I  think though that if I choose the gummies I would have been happy too. I think either would have been fine, but they both still would have pro's and cons. Sometimes it's just so hard to know what to do and even though your reading about everyone else's experience you have no way of knowing what your outcome or feelings about it will be.

Jerusha- I just wanted to say I have the silicone rounds and when I first got them they seemed so soft to me, but now I notice they seem very firm, don't really move (although I can push them together in a bra if I wanted) and  are very tight in the pocket, So maybe firmness is just the nature of implants? I hear saline is much firmer than the silcone and ripples more too.

Lilah-he said no massaging at the 2 week follow up, but I see him in two weeks and see what he says then. Someone else said some PS's don't want massaging if they used alloderm. I think they are soft,but I think it's just that they are so numb, especially the left so they feel weird to me. In a way they look so similar to the TE and don't move just like the TE didn't.

Hi ladies--Spoke to Dr. Pusic's office at Sloan (the recommended PS) regarding the 410 study guidelines. Jessica was really helpful

Her office does indeed treat patients as much as 5 hours away, but only if they area also receiving other care at Sloan (oncology, etc.).  So that's how they can get around it in the Allegan study. The research assistant also confirmed the 90 minute away rule (not 90 miles) as part of the study.

 Elizza--which implants did you go with? I've been reading these great posts and am now getting a bit confused.  

 Lilah--I told my DC doc I could stay in town for weeks after the exchange for follow up visits. But his nurse squashed that idea citing the study guidelines (the distance rule). 

 PS in DC also said that I could go from a round to a gummy later--but he prefers I put in a shaped saline rather than a round (afraid it would end up under my armpit). 

 So I have to confirm with my StL doc in 2 days whether I'm having the surgery on my scheduled date of Dec 30 (with a shaped saline or round silicone) or just waiting it out until things are more settled in my life and waiting for a 410. 

I'm inclined to move forward and get it done this year and doing an exchange for a 410 later...Thanks to all of you for listening!