Calling all TNs
Comments
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For those of you who have had UMX or BMX, can I ask what it feels like TO YOU? Do you get used to the lack of sensation after reconstruction?
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Hi Carolina
I can answer for UMX. I am not sure if you want surgical details or just how I feel now? So, I will tell you that 2 months post recon, it feels great to put on clothes, and look like me (with a blonde wig! lol). I didn't have much trouble with the TE, just trouble dressing to camouflage, while "in progress," as my right breast was a DDDD. The TE was filled to 400cc at the time of the UMX, so it wasn't too difficult...just lotsa print tops. It felt a little tight and heavy once I got to 600cc, then waited a month before recon. I have a Natrelle Style 20, High Projection 700cc round silicone implant. My reduction brought my right breast to a DD-DDD, depending on my weight and the bra. The problem with a UMX is you have to maintain your weight to stay "even," and I am 12 lbs heavier (Thanks, chemo--NOT!), so my right is a DDD and my left, a DD. I am working on the weight with Spinning.
I had nipple and skin -sparing, so I am lucky in that regard. There is no feeling in my left nipple, and some of the pigmentation is gone, but my PS did a good job of keeping it in line with my right nipple. It's kind of permanently erect, but I guess that's better than the other way around? It does feel quite different. It is cooler, heavier and tighter than my right. It doesn't "jiggle." And when braless, it feels noticeably very different. But there is no discomfort. And to look good in clothes and a bathing suit were the goals I presented to my PS. I am an active 57 yo, and appearance is important to me. As far as feeling...the loss of sensation to my nipple is a little sad, but it sure beats the alternative. And I am feeling sensation coming back a bit on my healthy side, not like it was; I am hoping it may fully return. That is part of why I am glad I chose UMX, (And a very good PS). I will need some revision on the implant side, as happens with many implant recons. There is noticeable movement of my pectoral muscle ( I lift weights), and some "flattening" in the upper pole, as my BS had to go in during recon and scrape more tissue for pathology because I had a <1mm margin at UMX, of IDC. (The path came back Clean!-Yay Chemo!). So all in all, I am happy with my choices, and am so relieved to look and feel pretty "normal". I think starting recon at UMX did wonders for my psychological self, and the recon surgery was surprisingly easy. Whew!
I am also very glad that our options after MX have come a long way in the past 20 years, and thank God for the Docs and Senators who pushed for the Federal Recon Law.
I hope this helps you, Carolina. You may want to check out the "RealSelf" website, there are many surgical pics, questions and answers on that site, as well as threads on BCO. Ask questions of every health care provider, and come here anytime for info. This is an overwhelming "experience," but I have to say the months before treatment began were the worst. It gets easier when things start rolling.
Hugs!
arlene
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Arlene-THANK YOU for the recon info; I've been struggling mightily with notions about BMX surgery and its aftermath, to the point that I was pretty much flipping out here on the board a few weeks ago and probably (inadvertently) scaring and/or offending the wonderful folks here.
I can't stomach "gross" at all, so I can't go look at surgery photos. Your descriptions have allowed me to visualize what's involved, at least to some extent, which I really appreciate. Since I can't bring myself to actually look at photos, can you explain how the pectoral muscle is (are) affected? Is the TE/implant placed directly underneath the pec(s) in a free-floating fashion, or is it sutured to the muscle? Pecs themselves aren't round, even with a lot of weight lifting; I'm trying to wrap my brain around how it looks/might look... Can you do pec exercises normally? I know that these are questions that I'll need to address down the road with my onco doc/surgeon/PS, but I truly welcome any info that you (and anyone else) can provide!
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Hi Adark
I took this from my PS's website:
There are two basic types of breast reconstruction: those that use a breast implant to replace the removed breast tissue, and those that use skin and fat from another area of the body (known as autologous tissue). With both procedures, there are several different modifications that can be made to best suit the individual patient's needs.
Implant-based breast reconstruction is performed similar to a breast augmentation, with the use of a silicone or saline-filled implant to replace breast tissue. A breast implant requires coverage with the patient's breast skin, some of which may have been removed during the mastectomy. If additional skin coverage is needed, it can be provided by using a tissue expander to stretch the remaining breast skin and muscle over a period of several weeks. When the expander is fully inflated, a second outpatient operation is performed to remove the tissue expander and place a permanent implant. The permanent implant most commonly is filled with silicone gel, but saline filled implants are also available. In some cases the implant reconstruction can be done in one stage, without needing to place the tissue expander. Drs. Karp and Choi will decide which technique is best for each individual patient during the initial consultation. Skin taken from the patient's back can also be transferred to the breast area to cover the implant.
My PS also used Alloderm, a collagen matrix made from human skin from a tissue bank, to create a sling with the pec muscle, to hold the implant in place. I am not sure if the implant is sutured in place. I do use the chest press machine to exercise...starting back up with just 25lbs. I just went back to weights this past week, since february, so I backed off everything by about 25%. I see a horizontal line/crease across my chest, coming from underarm region, going about 3-4" across my chest toward my sternum when I flex. But hey, if that's my "combat" wound, I will deal with it. I will be asking him to see if it can be revised with fat grafting. I understand that it takes 6 months to see where the implant will "settle," before any revisions are done. I have to be honest with you. I needed major lifting of my pre-UMX left breast, and so it was not a pretty sight while I had the TE in. Immediately post-op, my nipple and lower half of my breast were purple for a couple of weeks. And I had a huge crease at the base of the expander. But after recon, and I am talking while in the recovery room, my implant breast looked really good, the crease disappeared and my nipple was a little left, but with reduction in swelling over the past 2 months, it has moved centrally. The redux/lift on the right was amazing! I can go braless and my breasts now sit where they were when I was 21. woohooo!
You should read all you can...My PS website is www.kcnyplasticsurgery.com/meet-the-doctors/dr-nolan-karp He has a lot of info on there re: recon. I do not look the same...my right looks Waaaay better, and my left looks pretty good. And I will not give up exercising. At my 6 week follow-up, he told me No Restrictions...which made me Very Happy. Don't be afraid. Know your goals for appearance and function in advance. Discuss them with your docs. My doc used a drain for UMX, and after Implant sx...to me they were the biggest trouble post-op...an annoyance. My UMX drain was out in 20 days and the recon drain was out in 8 days. And I only needed pain meds for 24 hrs after recon surgery and was driving on day 8 after the drain was pulled. Slept in a recliner for 10 days, Lifted 10lbs or less for the first 12 weeks, braless for 6 weeks, and now I am back in my pretty underwires from SOMA. The recon was the best part of all of this, I have to say. I wish you less anxiety and a good PS! Are you having BMX? I know that is tougher than UMX, but you will get through it. You Will Find Strength!
Hugs
arlene---ask me any questions!
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Arlene - You rock! I don't know yet what type of surgery I'll be undergoing; I'm waiting on more extensive genetic testing right now. I've got very dense breasts, though, and even the "good" breast has high-risk masses (including areas of ALH), so it'll probably be BMX, regardless. Knowing how horrified I am at the prospect of MX surgery/recon/their aftermath, my onco doc sympathetically suggested that I could "initially" have a lumpectomy–but I know that that's not what she recommends, and she probably assumes that I'll have to have a BMX down the road, anyway... *Sigh* There's no way I can do unilateral; I've got DDs, and they'd look nothing alike, I'm guessing, after surgery. Maybe I won't have to have TEs, in my case, because I'd ask for smaller recons..?
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Arlene that was a brilliant explicit post and will surely help the ladies who have to make the decision on what treatment to have. Hopefully with all the "fors" and "againsts" that have been posted, it will help in conjunction with their breast surgeons, on what is the right way forward for them. It is a difficult decision, mastectomy, lumpectomy, recon or no recon, but as long as they are armed with all the facts then whatever they chose will be right for them.
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Adark
I did UMX with DDDDs! I had the reduction /lift of the right healthy at the same time as implant placement. And recovery was easy. One day resting, then eased back to normal in 2 weeks. But go with your gut and your docs advice. If you have BMX, ask about immediate recon. Implants can be placed at the time of BMX, in many cases. If you need radiation, then you will probably need TEs before implant exchange. I needed mine, even with the DDDD, and no radiation. Valium took care of the occasional spasms and tightness. I only needed it a few times. You have options to explore!
I "rock"some days, but believe me, I have had, and still have, many "psych" moments. Lol
Arlene
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Cocker
Thank you! You are my posting idol. So your compliment means a lot. I Find it easier to talk about the physiological than the psychological, methinks.
Hugs!
Arlene
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Thank you Luv, Cocker, Jen, Meadow, Lillie, Carolina and Arlene.
Thanks EVERYONE for all of your wisdom and eloquence. BC is so crummy, - but the support here is so wonderful.
hugs to all
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Just heard on the news that Jackie Collins has died of a 6½ year breast cancer battle which she kept from family members though how she managed that I don't know. Apparently she was stage 4 from the onset. I have read several of her (shall we say steamy books!!) and they were 'quite' interesting. Such a shame that cancer claims another victim. Cancer sux.
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It does suck. I have been absent from here for about a month. In August I started having pains in my abdomen. PCP did not feel anything, we both agreed maybe a torn muscle? Or strained one?
Labor Day weekend pain was so bad I went to Walk in where they also can do scans. Friday I went: CT scan shows a mass of about 4 iinches in my right abdoment and scattered throughout pelvic region.
MO said before needle biopsy that if it is the TN rerturning that quickly (finished radiation June 1 with clean Pet and tumor markers) we would have a fight.
I think we all agree it is probably ovarian. Will find out tomorrow. These past two weeks have been unreal: going from planning my funeral to being grateful to be here. I am very active on the Christian Women thread here, and I feel much better emotionally.
Al, great news!!!
Prayers and positive thoughts absolutely appreciated!
Kath
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Oh Kath I'm sorry to hear this! I will pray, pray and pray some more for you. Hugging you right now. Keep us posted
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Kath
I am sending you prayers and strength. We are with you for this fight.
Hugs
arlene
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Kath
Sending hugs and BE WELL wishes.
Take one day at a time right now, and dont rush to conclusions!
Keep your chin up and keep us updated.
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Kath, positive prayers wrapped in a hug. We are here for you.
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Kath devastated to hear this news. I hope to God they are wrong and it doesn't turn out to be cancer again. Saying many prayers for tomorrow and have got my arms wrapped tight around you. We will all be with you every step of the way.
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Dx 26 January 2015 - 2.5cm, Stage I, Grade 3, 0/11 nodes, HER2-
Surgery 5 February 2015 - Lumpectomy: Right; Lymph node removal: Right
Chemotherapy - March to 3 August 2015
Radiation Therapy 16 September to 28 October 2015 - Breast right
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Hi. I started reading here trying to find out what the statistics are of BC returning being hormone negative. I didn't wanted to join any groups thinking I will just travel the journey by myself with my family but it seems here we can motivate and encourage others going through BC and it's traumas and treatments and also learn a lot from several others going through the same emotions and feelings and some who have been 'healthy' for several years. It is wonderful to see how everyone gets to know and encourage each other.
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Dx 26 January 2015 - 2.5cm, Stage I, Grade 3, 0/11 nodes, HER2-
Surgery 5 February 2015 - Lumpectomy: Right; Lymph node removal: Right
Chemotherapy - March to 3 August 2015
Radiation Therapy 16 September to 28 October 2015 - Breast right
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Welcome Feb2015! Don't do this alone. 💚
Kath, there are no words. I'm praying for you right now and will continue to. Will you please update us as soon as possible tomorrow? We are here with you every step.
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@adarkadept - hello. I had a BMX since I was diagnosed with cancer on both sides and turned out to be BRCA1 positive. Ironically, I had the mammogram because I was considering breast reduction surgery. Got a little more than expected! Anyway, I was DD and took the opportunity to go to a much smaller (maybe a small B? - I haven't gotten to go bra shopping during the chemo and don't need the support). Because I was going for such a reduction and my tumor was not anywhere near the skin I kept, I was able to have the implants done at the same time as the BMX. No additional surgery needed for the girls. My surgeon and plastic surgeon work together often and did a great job. The implants are under the pec muscle in an aloderm sling. I had surgery three months ago and. Am just starting to fell like I can swim, lift weight, etc. Of course, my recovery has been waylaid by the chemo.
My scars are anchor shaped. A smiley curve under the breast and a short vertical from the smiley to about center. I also have smaller scars in each armpit where they did the node biopsies. Finally, I have small dot scars, one each side on my ribs, just under the smileys where the surgical drains were. All scars are healing really well using a silicon gel that I got from the plastic surgeon. At first it made me kind of sick feeling to look at myself in the mirror, but now that everything is more healed, that went away.
I looked into nipple sparing surgery, but was heart broken that they would not have any sensation. Also, My nipples were hanging fairly low and would have needed to travel a long way up to their new home. And, something about my very dense tissue meant that my nipples would not have survived the journey. So I opted for no nipples. I was worried that the girls would lack a center, but the tops of the vertical scars are right about where a nipple should be and look pretty good if I do say so myself. My DH also likes them. If I ever want more I can get temporary or permanent nipple tattoos. I like that this option has meant I will never have headlights.
I was more upset about losing my nipple sensation than almost anything else I in this whole cancer fiasco. I have been pleasantly surprised at how much sensation I have from the skin on my chest. I still have the sensation of being cold or aroused, so it's all good.
The biggest thing I haven't liked is the feel of the implants under the pec muscle. Even as small as I went (350cc), I feel the pull of the weight and sometimes this still hurts. I imagine this will fade as I heal, but I hate the sensation. I also don't really like that the implant seems like it is just perky sticking straight off my chest. I went with the teardrop shaped silicon, which has a more natural shape, but I still worry that when I get back to surfing, the implants will be in the way.
The biggest thing I have liked is that my clothes fit me so much nicer. I LOVE being smaller chested and just wearing a camisole even when I hike.
Let me know if you have any questions at all.
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PS. A BMX meant that I did not need any radiation (during surgery or after), since there was no tissue left.
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Toby...sending you support, sending prayers up for you. Thank you for letting us all know and support you.
Feb2015, welcome! Yes, do not do this alone, especially when you can do it with us!
Pea, Thanks for the breast update, sounds like you are doing great. I bet you look great and I can tell you feel great. That is worth so much!
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Thanks, Peabrain. I really appreciate your willingness to share so much. I'm still trying to visualize TEs/implants *under* the pec muscles vs. on top of them, as they'd sit in a breast augmentation. My onco doc explained that this positioning was due to there being no breast tissue left in which the implant could sit, and the remaining skin (over the pec) being thin and fragile. It all makes me sick; the nipple issue makes me even angrier.
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*Gentle hugs* to the new folks and to those who're worried. I don't talk/post a lot, but I make up for that in thinking.
And I'm thinking of all of you, all the time.
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Praying I will be presented with a great treatment plan and start as soon as possible!!
I have stayed away from the internet, as I did with TN-- but did see some good things about tx of ovarian if that is it
Thank you all so much for your support!!!
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Perfectly said by a tn gal. So beautiful and so true. Thank you Joan. I'm sharing this in all the forums I follow.
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kath....I'm thinking good thoughts that whatever is in your abdominal area is easy to deal with and not serious. xoxo
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adarkadept - the way my surgeon explained it, the pec muscles stay attached at the two ends and the implant is slipped between the bone and the muscle. Because the attachments are not messed with, the muscle still works like it did before. The muscle is not big enough to cover the whole implant, so they add an aloderm sling to help hold and cover the rest of the implant that is not covered by muscle. I have really pushed my surgeon about how the muscle works and he swears I will be able to do anything that I could do before. I feel like I will not really know if this was true until maybe the one year mark.
Because the implant is under either muscle or aloderm, your skin is not directly against the implant and this allows it to anchor and heal well. It also makes the whole breast look better. I have not noticed rippling or weird surface dents. I understand that the implant can shift a little and probably look weird under higher intensity exercise, like a push up. I haven't gotten to test this yet : )
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Kath, my thoughts and prayers are with you. Sending you a great big hug. 🌸
Feb2015, joining this discussion group was the best thing I have done so far in my journey. These women are amazing and I feel supported by people who know exactly what I am going through. You have friends here
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Thanks everyone for the warm welcome. It is so good to be part of a group of ladies that REALLY understand what I'm going through.
Katy - praying for you and hope to hear later today that all is fine
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