TEs. A Beginner's Primer
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fubc - I am not overly worried about the MRI because 4 biopsies were already done, with the right implant removed, so the surgeon actually had visual of what she was biopsy-ing, during the last surgery and none of them showed cancer. This imaging is more so there is an exclamation mark at the end of the sentence. Of course, I thought the PET would be routine too, so what do I know, lol! MRI is a more thorough tool to image the former breast area and couldn't be done when I had the expander in place so my MO just wants that piece of the puzzle done now that I have had some healing time. As far as side effects from AI drugs - I am actually on Femara now. I started on Femara, and after about six months I developed a painful trigger thumb - my only really intense side effect at that point. I already had hot flashes, joint pain, and sleep issues - those did not get worse. My MO favors Femara, but indicated a switch to Arimidex might solve the trigger issue. I switched and the trigger went away. I stayed on Arimidex for about 18 months, then developed multiple triggers and a knee that needed a cortisone injection, so I switched back to Femara and have stayed on it for the last 3 years.
wildtulip - Just in case moon doesn't return for a while, the reason I have seen for choosing saline over silicone has to do with size - silicone ends at 800ccs, but you can overfill a saline implant larger than that. My PS will overfill to 960. My understanding of the differences in the way they feel is that saline is a bit more firm, but that may be due to the overfill.
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Monica, I think the links you already included are enough.
I would presume that anyone on the TE Primer board found us through the Breast Reconstruction Forum. In other words, they probably already have been diagnosed, have had MX surgery, and have had TEs placed.
I would suggest adding some more wording to your rule #1, and just the word "immediately" to rule #2:
1. Talk to your PS. They are all different from one another and have different rules about restrictions, bras, drains, exercise, and recovery. Their approach on the timing and amount of fills is different, even who does the fills (PS or nurse). They know you best and the special circumstances about your case. If you have any questions, ASK your PS! If you are uncomfortable about the speed or amount of fills, ASK your PS! If you are concerned about the size, volume, or shape of your eventual implant, ASK your PS! If something just doesn't feel right, ASK you PS!
2. If you are experiencing any fever, or redness in the breast, CALL YOUR PS OR BS immediately! Many problems can be stopped in their tracks if intervention is in time.
Much love,
Madelyn
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SK -- a trigger thumb? I got one of those 4 weeks ago, but never attributed it to AI...perhaps I should give it a second thought?
Three weeks post MX I volunteered at church and a couple of 5 year olds got the better of me twisting my right hand/thumb...after a couple of weeks in a thumb guard I developed a trigger...
Have gone to PT and it is getting better but still there...none of the PT/Orthopedist folks attributed a link to the Arimedex.
How do you separate general issues from AI side-effects...I took this as an activity injury (couldn't really call it a "sports" injury)
Learn something new everyday on this site.
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trmtab - I read it here too! It is a known SE of aromatase inhibitors, and switching either the drug, or even brand within the same drug, has worked for me. The other thing I have done is use Coban or athletic tape to immobilize the thumb or finger and that seems to help it heal. Some have had to get a cortisone injection or have surgery, which is an easy release type surgery, but I have bi-lat LE so have not wanted a hand surgery or deep injection if I can avoid one. I just cut a length of tape about 5" long and 1" wide (I usually cut the tape in half lengthwise and it gives me two correct sized lengths), then wrap tight enough to stabilize the digit but not so tight that it impairs circulation - it is the kind that sticks to itself like they use after a blood draw. This has helped prevent the pain for me by not allowing it to bend as much. I wear it for about a month and that seems to do the trick. Here is a link to the tape:
And the CVS brand:
Your MO has probably had other patients with this - it is pretty common. If you type trigger into the search box on this site you will see lots of posts. As far as determining which things are caused by AI drugs, and which are caused by other things, it is hard to say. The usual - joint pain, insomnia, hot flashes, weight gain, triggers, etc. - can all be these meds, or other things. It seems to be a trial and error thing, but if you read the threads here devoted to Arimidex, Femara and Aromasin you will see consensus.
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Okay, well another item to attribute to the BC!
The PT made me a thumb guard (molded from hot plastic that took shape and became hard when cool) that I have been lacing on to me with that self adhesive tape...guess I should load up on tape!
I see the Orthopedist in 10 days, but don't see the MO until October...but guess I might be seeing him sooner.
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Finallysaw the surgeon. TE in place still. It was a torn muscle and two liters of blood in my breast. I had two liters of blood transfusion. I am going home later today.
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Molly - that sounds just aweful! Am I assuming this is something that happened as a result of surgery or did you injur yourself? I wish you a speedy recovery. I guess it's a relief it you didn't loose the expander or have an infection too. Sounds very painful to add to your recovery. I'm glad you can go home soon. Speedy recovery wishes to you.
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Not sure if I injured myself or not. Either way I am very lucky.
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Molly, wow! My thoughts and prayers are with you! Blood transfusion?!?! Holy Cow
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Molly, I hope you get good rest tonight. Healing hugs!!
Special K, Thank you for the saline/silicone info! The volumes you mentioned made my jaw drop. I'm small and would topple over with that much in my boobs! Do you have anything to add regarding comfort and general movement of implants with activity? My PS commented to me that silicone would be better for me because I like to be active, but it's always nice to hear from women who have lived it.
I had trigger thumb too, but it was when I was on Tamoxifen for three months. I went to hand PT and got a thumb guard like TrmTab describbed. I ended up having to get a cortisone shot, and the Dr who did it mentioned he has seen it in others on Tamoxifen too.
I got my 3rd fill today and and now at 300/200 (LD flap) and I can definitely feel a difference. I'm feeling the rocks, or iron bra, I've read others talk about. I'm likely going to end up with implants in the 400-500 range, so I'm getting there. I have been having bad neck, shoulder and back pain, and today the nurses confirmed my suspicions that it was related to the fills. They said with all the stretching going on in front, it can pull on the neck and back since they're all connected. I've tried stretching, a new pillow and today I went to a chiropractor. I'm not completely pain free, but I feel so much better and I can turn my head from side to side. Always a good thing, especially when driving!
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SpecialK Thank you for the info. I went back to arimidex again as per MO advise. They told me to try it for a few weeks if that doesn't work, they will switch me to something else. I decided against taxomifen bc one of the SE is uterine cancer. That really scared me and I am telling myself I will need to learn to live with joint pains etc. It's the anxiety I can't handle.
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molly - hang in there!
wildtulip - I have not seen anyone opt for saline in the volumes you mentioned, often those who do choose saline have a wider chest or bigger bone structure and need that extra volume to replace what they lost in mastectomy. I agree with your PS that silicone would be the better choice for the size you desire - it is a bit softer. I had a 600cc Mentor smooth round high profile on the left and a 650cc on the right at my first reconstruction. After all the issues with my left I could only safely go to 435ml Natrelle Inspiras and I like them better - very close to the size I was naturally. Surprisingly I can still wear the same bras I wore with the larger implants, but I am infinitely more comfortable. I am fairly petite and the previous implants were just too big. The discomfort usually goes away at exchange - I had a lot in the upper back between my shoulder blades. Expanders have a hard back that allows the additions of saline to push the skin and muscle forward and permanent implants do not - so all of those muscles relax a bit more and you should be more comfy. I found heat, in the form of showers and laying on those microwaveable beanbags to help until exchange.
fubc - try the tape - it really worked for me. Also, I switched to an anti-inflammatory diet and it seemed to help a lot with the joint pain. I am an allergic person - have lots of things I am allergic to, so I follow the Virgin Diet. It is a hard diet, but it helped me lose the chemo weight and significantly eased my joint pain and improved my GI tract, the source of much of our immune response. Here is a synopsis:
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can someone remind me why we are not supposed to raise our arms over our head with drains in. I'm not sure I ever knew why. Is this a dr by dr thing? After BMX I was told not to. Don't remember after Feb TEs. This time they haven't said
After my BMX BS wanted me to strip drains every time I emptied. After Feb TE placement PS said "no stripping" unless clogged. This PS says "strip occasionally".
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My thinking will be so you don't pull the drains out
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Special K, Thank you so much for your input on implants! My PS only uses Mentor, but I have confidence in him that the end result will be good. I'm a little nervous still with the idea of silicone, just because saline is natural. However, I'm more on board with silicone as I hear from others and do my research. Kinda like your diet..natural vs processed. I looked at your link about the Virgin diet, and it does look really hard to maintain, yet I can see the benefits. I eat fruits and veggies consistently, and stay away from processed foods as much as possible. I definitely have room for improvement, though! It's interesting that you mentioned heat for the sore back muscles. I was also trying a microwavable rice sock to relieve some of the pain in my neck and shoulders, and when I went to the chiropractor he suggested to limit heat to a few minutes. He said ice would be better and take down the swelling. It's always so hard to know which way to go..heat or ice.
Ringelle, I don't have an answer for you on the tubes, but have to admit I found humor in your words. If someone took your post out of context, or just glazed over the words...."no stripping, strip occasionally." To strip, or not to strip...maybe I should go BIG and make money out of this ordeal! JK. Seriously, I took a pole dance class once (for fitness), and it is hard!
I hope everyone has a good day!
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wildtulip - saline implants are encased in a silicone shell, so the inside of the implant is natural, but the outside is not. Also, the interior of silicone implants is cohesive gel, so if they rupture - which is extremely rare - the gel doesn't travel.
ringelle - usually the no arms thing is due to node removal, not so much the drains. I have had drains half a dozen times and was not told not to lift my arms other than my original surgery.
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Thanks for sharing your expertise, Special K!
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After having to almost stand on my head for my Ecocardiogram, I think I may cancel my fill tomorrow. There was no mention of TEs on the order the cardiologist received for my test. They couldn't find my heart as the wonddohicky can't read thru saline or silicon, so on my head I went! They did eventually find my heart and they'll have results later today. It was pretty comical for awhile there. I couldn't stop laughing and the whole time they kept saying "It isn't funny!" I told them that I walked in here, I'm breathing, my heart is beating, therefore I have a heart in there somewhere! I felt bad for them having to put up with my sense of humor. They felt bad for me as they had to push so hard on the scanner to find anything. Sooo,I'm very sore now.
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Lori, sorry you're sore & you had to do gymnastics for the echo cardiogram. I'm curious if they said implants would be just as challenging? I had a check up with my cardiologist prior to June surgery and she didn't say anything about test challenges with implants.
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Wildtulip, the tech said they have the same problem with the implants. If the test order is filled out properly they can get a better idea as to what needs to be done, use a different machine etc.
Another good thing is that I was early for my test so she had time to reorganize her thoughts. I was impressed that she took me before others that were scheduled before me. She said I had priority as I was in pain and my chemo ordeal was just starting. She assured me the others waiting weren't severe heart patients, and they should have been there on time. I like her
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Thanks, Lori. That's good info for me. I'm 47, but have a bi-cuspid aeortic valve, so need to have an echo every few years. Hopefully when I'm due I'll remember to mention implants.
I'm sorry about your pain. That's great that you were prioritized and they treated you well!
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I ended up going to clinic yesterday because I felt generally unwell and was nervous going into the weekend with an elevated temperature and feeling so bad. Everything checked out just fine and they recommended that I ween myself off the narcotics (I think I was using them out of fear from my first expander placement) Stopped using them at noon yesterday and haven't had much pain. I had no idea a build up of narcotics could make one feel so "sick" Anyway - starting to feel better. I saw a different surgeon and when he "took a peak" (i love how they say that) he said "wow - beautiful - no - I mean it - these are really nice" (Um - thanks - wierd) He was really weirdly excited about my expanders and then thankfully told me that my surgeon had told him he had a patient that he had to re do the expanders because he wasn't happy with the way I was expanded. He must have said 5 times - "these are beautiful - these are going to be nice" I think that alone made me feel better - except I was told that last time too! LOL
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Ringelle- sounds like you've got a ps who really cares about the outcome. I've taken very little pain meds and I feel the same way. I think it's our bodies are doing what they need to do to heal. I feel blah. Not sick enough to lie in bed, but not well enough to do anything. And I'm bored to pieces.
Feel better...think about how great you're gonna look when all this is over!
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Ringelle, BethL, I hope both of you are feeling better and have a good weekend!
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LOL - I feel like I'm on a merry-go-round! I just did a search for a question and found a similar question of mine back in February! I'm definitely feeling better today than I was late last week and into the weekend. I still have drains in and the out put is still >70 ml daily. They are downward trending but realistically I expect to have them at least another week (or more) I am a daycare director (trying to get ready for the new school year - busiest time of the year) One week away wouldn't really matter but more is starting to become an issue for me. I can work from home but its just not the same. When I'm at work though - I'm crazy busy and usually put in way too many hours without meaning to and I interact with the kids quite a bit. My last PS said no going back to work for me until the drains were out. This one says I can! (Hmpf) Any opinions? Once I go back, the flood gates open and there really won't be turning back. I've tried 5 times to go back for half days - and it just doesn't happen. Any opinions about going back? If I was a desk job I would go back without second thought. (not having showered and only bird baths is a bit of a consideration too)
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Ringelle, I had an LD flap in addition to TE's, so I don't know what the typical recovery time for that surgery is, BUT you are not even two weeks out! Give yourself time to heal, and get your energy back. Work from home as much as you can...please take care of yourself!! Also consider you do not want a child accidentally catching a drain tube. I work in schools and I often see, especially with little ones, that in the fall when they all get back together the germs multiple and there is a lot of illness. That is the last thing you need. I'm gearing up to go back to school, so I get it, but your health is more important.
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Well, I didn't go back to work. I've worked quite a bit from home today - I'm fine with that. I did a bird bath and it all about wiped me out! Hopefully I'll hear back from my PS and get his ruling on the whole matter. On a silver lining note about being back to the beginning of my TE stage again, I'm not filled to capacity yet and It's been almost two weeks since I've walked into a door way or banged myself on a cabinet door! I've also got a small break from the hardness of it all - I know it's coming though - and this time I think it will be fast and furious!
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ringelle- take it easy! Easier said than done, I know. (As I stain my stairs).... I remember all too well banging into things. Hopefully this round will be uneventful for you. Stinks you have to step back, but I imagine the results will be so much better because of it. Remember...kids have germs, lots of them. You need to do your best to stay well. As far as bathing-I was allowed to take showers with drains, just coukdnt let the water hit my chest. Do you have a bench orchair you can stick in the shower? Would probably make you feel better.
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I don't have an appointment with my PS yet. I see his associate tomorrow for follow up to my emergency surgery. I have a feeling PS won't want to do fills until the risk of another hematoma developing passes. Originally I was hoping for a mid October exchange. Now I am planning on waiting until at least January. I can't face another surgery this year. 4 in a 12 month period has been very hard on me.
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Ringelle, The fact that a bird bath tired you out should say a lot to you about how much you need to rest. I hope you can find a work/rest balance. Take care. Hugs!
Molly, I'm sorry this year has been so hard on you. I hope you have a good appointment tomorrow. Sending you healing hugs!!
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