April & May 2015 Surgery Sisters
Comments
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MaryAgatha - it sounds like you've done your research and it is YOUR choice. Only one you can make yourself. So many time we hear it's our choice then we get arguments. Huh? When it's all said and done I always resort to one of my favorite lines of a song "if I fail if I suceed at least I did what I believed". Your words are sound & I agree that thats what I'd take to the doctors! In reality all those percentage points are is a numbers game and we're all doing the best we can with the gambles we'r offered. Make it YOUR game! Hugs & kisses and comforting prayers!
Bunny - so sorry for your loss. I can't imagine the pain & bewilderment you are going through. Life is so unfair! You can't get over struggling with one diaster only to be hit with another. Know you are in our thoughts & in our prayers & your sisters will back you in all your decisions. You know what's best for you! Kisses, warm embrasses & peaceful prayers
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Thank you all for your words of support!!! Downdog, as always, you're an amazing wealth of knowledge. None of the doctors spelled it out like that. It's good to know. Both my BS and MO told me that they would feel comfortable with me not taking it; they just wanted me to give it a try before making the decision and I said I will do it. I'm a pleaser by nature, so the thought of having to go back to them and say I didn't even want to try makes me a bit nervous. But I feel stronger after hearing some of you echo my thoughts. I told my DH that I would do it for him and the kids if he felt strongly about it. He walked through all the pros and cons and is totally in agreement with me. Would I regret this decision if I end up with a recurrence? Maybe. Would I regret having taken tamoxifen if I end up with uterine cancer or cataract or a blood clot? Probably. I will always know that I did put up a good fight by opting for a BMX rather than a UMX. I will give myself a break.
Bunnie, I'm so sorry to hear about your son. I wish I knew some magical words of comfort to offer you. I'm glad Zoloft is helping. I actually have a tendency to get depressed; it runs in the family (the same side of the family where a number of relatives died of breast cancer or suicide). So "feeling sad or empty" was one of the most dreaded side effects on the list of side effects for tamoxifen I noticed, after the serious health issues I just mentioned. I don't mind dealing with occasional hot flashes or indigestion, but I don't want to get depressed again after finally finding a good place right now.
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MaryAgatha - first thanks so much for sharing & wonderful honest feelings ... I commend & congratulate you for making a choice that is right for you! I will face the discussion on Tamoxifen after chemo & rads ! Not looking forward to it ..
Bunny - so so sorry for your loss! My heart breaks for you! My Brother passed too young 2 years ago & my Mom was/ still is so devastated! You are in my thoughts!
Ladies - I am 6 weeks post BMX today - wow how time flies! I am doing OK - the cording is worse - big cord popped out under my armpit - but leaving for 2 week Beach Vacation Saturday morning & plan to leave cancer behind for 2 weeks ππΊπͺπ»ππ¬πβοΈ
Will start 20 week chemo regimen when I get back so perfect timing for nice trip with family
Hope everyone is doing well
Katy - went to dentist today & Nemo movie on in waiting room - the part "Just keep swimming" thought if you right away - Dori just makes me - had to share
Mary
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Mary- haha! My favorite line in the movie and such USEFUL imagery right now, trying to recover from 6th and last chemo. Just for the record, another favorite part is the seagulls at the dock when they see food. (Seagull food, that is). They all say in union, "mine...mine...mine..." Always makes me laugh. It's the little things right now..sigh...
Hope you have a fabulous, memorable, and relaxing vacation. Don't think about IT, or us. Just enjoy
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bunny - so sorry for your loss.Β No words will ever be enough to comfort you for the loss of your child, but please know your are in my thoughts and prayers.Β Your son was an angel to you here on earth and now he is one up in heaven who will contantly watch over his mum.
mdoc - have a wonderful beach vacation.Β you've gotten over one hurdle and now you justΒ need to reenergize for the next so try not to think of what's to come but just enjoy the now.Β Don't forget the sunscreen!!!
jackbirdie - congrats on your last chemo!!!Β You did it!!Β Rest well and get your energy back.Β
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Hello Wonderful Ladies !!
life is tough, sending hugs to all.
i saw a PT yesterday, i have mild axillary cording, and im too tanned lol, [there is a drought here, lots of sunny days] , she gave me some specific stretches to do, but said to slow down and be kinder to my wound.
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Hi .All -
I have been on and off these boards since my cancer experience began last August. I am just about seven months out of radiation therapy. I didn't need chemotherapy. Started taking Tamoxifen about 6 months ago. I saw my MO today for a regular checkup. Everything was good, except for when I mentioned the tightened feeling I began to experience within the last almost two weeks ago. I told her I felt all the tightening and she quickly said I have developed "cording" but that it isn't too bad.She is going to give me a referral to the local S.T.A.R therapy program. The PT is provided by someone who has lots of experience with lymphedema also. She says that women who have had breast cancer get priority. It does really hurt me when I try to use the arm for much of anything. Don't want to stop using it either, won't that make it just worse. I know it is late onset cording, does that make recovery much more unlikely. Yes, I had a sentinel node biopsy and removal. The MO said that the scar tissue looks a little worse, but I will ask the new therapist about this. Any information would be greatly appreciated.
MarieBernice6234
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hi MarieBernice. im not sure that late or early onset makes a difference to recovery over all. mine is uncomfortable, not painful.
im not so helpful for you, but there ladies here who will set us straight
they are so good and knowledgable!!
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Hi Marie Bernice,
I don't think recovery from cording is different for late onset. Most will go away completely after a few visits with the PT and doing the exercises. The PT can also massage the scar tissue. I got mine about a month after surgery. Full range of motion returned pretty quickly and the pain when reaching went away. The PT said not to baby the arm. It did take a while for one small cord to go away, but it did eventually. Good Luck, MJ
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Hi MJS1266 -Well it certainly is good to hear that early vs late onset cording is not much different in terms of recovery. I found out that my MO also referred me to a nurse practitioner related for lymphedema. I have to see her next week. Evaluation for PT therapy is on August 4th. Well it is always something, I guess.MarieBernice6234
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Hi DayLily15 -
Thanks for chiming in.How long have you had your cording? I have also been referred to a clinician related to lymphedema. My arm doesn't even look swollen. I am going to see my nurse navigator today so I can talk with her as well. I don't know, I trust my MO.though. I have had lot of quirky things that have happened to my arm on the right side. (where the cancer was).
MarieBernice6234
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hi. id say mine started at about 10-12 weeks. each day it is a little different, i figure its my remaining lymph nodes getting with the program, and once a new path is established it will easy up and go away. my PT gave me a list of does and donts for lyphedemia and in the same pamphlete all the advice is " un subatniated, or un known, or contradictory " . scientist only recently found out we have lyphms in our heads, so the facts a few. very frustrating.
so im doing gentle 20 second stretchs. as often as i can. and walking lots.
hugs to all
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Just dropping by to see how everyone is doing. Bunnie, I cannot imagine the depth of the grief you have suffered and the resultant hole in your heart from the loss of your son. I do hope that at least one of those dear grandbabies is the child of your precious son and that his legacy continues and provides you with far more joy than tears.
MarieBernice, delay in treatment would allow the cording to potentially progress, so the issue isn't how soon the cording develops, but rather the need to seek treatment once it is present. A PT will be able to resolve your cording issues, so no need to worry. Scar release is important to prevent adhesions from developing, which will pull and be painful. Deep friction massage can release fresh or mature scars, so it's never too late. Even if you haven't noticed any arm swelling, it is a good idea to consult a lymphedema specialist proactively. You will learn about preventative measures and exercises that you can do, your own personal risk, as well as manual lymph drainage techniques. You could potentially develop some local congestion just from doing something a bit too strenuous in the future, and by employing MLD, you will be able to help the swelling subside by facilitating drainage.
Sisters, I hope everyone is doing well and your recoveries are gaining ground or even completed. For those still in treatment, stay strong, you will get there. I hope that many of you are making new exercise goals to get fitter and lose some weight, if that applies to you. Make small realistic goals that are achieveable, so you don't get discouraged. Change is tough for adults. It's easier to be sedentary and to just tell yourself, 'nah, maybe tomorrow', but you should try and push yourself, even if you only do a little walking. Lots of women like Zumba and the social nature of any type of group class/activity will make it more fun and make you more accountable. You need to be a very motivated person to transform yourself solo. Start with small goals if tx has weakened you, or if you were never fit before bc. Weight bearing exercise is particularly important to my ER+ sisters, as the AIs and tamox (for those pre-meno) is deleterious to bone mineral density. Walking is a great weight bearing exercise and everyone can do it. If you want a bit more of a challenge, then my fitness nag of the week is: take the stairs. If you are physically able to with where you are with treatment, consider walking up a flight or two of stairs. If you are unsure of your health, have heart/lung issues, or are very unfit, please check with your doctor first. If you live in a rural area, you won't have the same opportunity with multi-storey buildings, but if you have a basement, there will be a flight of stairs. Do a set or two. Stairs beckon meβ¦I can't resist. One of my favourite places with lots of stairs is Positano, Italy on the Amalfi coast. There are a couple of thousand stairs from the beach up through the town to the Path of Gods. I get up at 6 am and run them. Because I'm a little nuts. And they also help give me the body of someone half my age.
When your recovery allows and if you are able to up the ante a bit, consider HIIT (High Intensity Interval Training). Nothing melts away fat faster (ok, maybe lipo, but you won't gain a healthy heart and lungs!). These are short sessions of high intensity followed by a recovery period. You should not be able to talk if you are working at a high intensity level. Bootcamps and gyms are great for these programs, but you can do your own free version on flights of stairs (or hills, but stairs are easier with predictable rise/run). Run/jog up, walk down, short rest, repeat. If you are able to, alternate run/jog, hopping on both feet, hopping on right foot, next flight left foot, taking every second step, do two sets, shorter rest period etc. β so many possible variations. Good luck with your fitness goals. Listen to your body and don't be hard on yourself if tx has zapped your energy. Build up slowly with small achievable goals, that are realistic for your abilities at this stage. My two mantras: 1. You only get out of your workout what you put in to it; 2. Dig deeper.
Have a wonderful weekend, sisters, with minimal SEs. Hugs to all.
Positano at sunset:
Coast from Capri. Beyond the left border of the photo lies Mt Vesuvius and Pompeii. And over a little further is Napoli, the birthplace of pizza. Mmmmm
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So wonderful to hear from you downdog. And your message was perfectly timed. For me anyway. I needed every word of that. You have been a brilliant leader and I am so glad I "ran" into you here. Hugs. Katy
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Hi Down Dog -
Thanks for your words of caution. Today I looked at my armpit in the mirror and with some movement on my part I could see the cording. It starts in my armpit area. I can imagine that the cording continues down the meatier part of my arm. I saw my nurse navigator today. She said that she didn't think it is lymphedema, so I am going to cancel that appointment. When I see the PT specialist, she can determine if it is lymphedema. She can treat and educate me on lymphedema. I can see the lymphedema specialist then if needed. My copays for appointments are a bit high, so I want to see if I needthe appointment before spending the money.
MarieBernice6234
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I also had some cording after my mastectomy, but am very happy to say that it went away quite soon despite the fact that I was also very anxious about it. I just did some regular massage myself and did some light lymphedema exercises. I do however, now have a problem with capsular contracture, following radiation, and have to decide whether I am going to take a chance to have an operation to remove the contracture as I have been told that I will have to prepare myself that I may end up losing my implant!! It is very uncomfortable as the breast which had the cancer and radiation is drawn right up and is rock hard. According to the PS (second opinion) this will only get worse. So to me, it seems like it is just something that I will have to go ahead with and hope for the best. Any one else who have had this? Would love to hear from you!
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MarieBernice6234 - I currently have cording - popped out nice and big under armpit about 2 weeks ago... could not get an apt with PT specialist until 7/28 due to vacation.. PS looked at it and said not to worry - most clear on their own and faster with PT help .. I used to feel like my arm was tearing at the elbow and that has subsided mostly - not just more annoying than anything. Hope yours clears up fast... keep us posted
Downdog - thanks so much for your inspiration and motivation as always - beautiful pics.. I am currently on a 2 week beach vacation with my kids and husband and we have gotten up every morning and walked for about 20 minutes before breakfast - I know small but a start and love that we are all doing it together. My husband has horrible knees and they need to be replaced and no one will touch them because he is too young and I have a compromised neck from a terrible accident about 5 years ago - put 2 cervical discs into my spinal cord and was almost paralyzed for life - my twins were 4 - it was fun!! What doesn't kill us makes us stronger right! Have always felt so fortunate to be able to walk which is the extent of exercise I can do and am committed to doing it as much as I can now ..
Hoping everyone is well!
Mary
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Hi All -
I have decided to keep the appointment with the lymphedema nurse practitioner on Tuesday after doing some further reading about lymphedema.I didn't know that there was a stage 0 which doesn't mean any swelling. There can be a fullness or heaviness feeling. I saw the cords in the the upper inside of my arm. Also near where the elbow bends.Hopefully I could be catching this early. Hope I am doing the right thing without being an alarmist.
MarieBernice6234
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Katy, I hope you are on an upward trend and feeling better PFC. Keep doing your best to walk. Exercise is the best non-medical thing you can do to help yourself as an ER+ woman. No need to ever run or jog, though - unless that is something that you want to do. A good long term goal could be to work toward being a brisk walkerβ¦all the health benefits and it wouldn't take a toll on your knees. Ideally, you want to embrace exercise, and if you scoff at that thought, then at least try and accept it, just like you have with juicing. You will be blasting away sites that estrogen can hide and helping prevent other degenerative diseases. If you resent or hate it and are forcing yourself to endure it, you will likely make excuses and let it slide. You will not be motivated to improve. It's too early now, but you will get to stage where exercise makes you feel better physically and mentally. Make weekly goals. A little further or at a little faster pace. Some days you just won't have it in you to improve and some days you will even regress. Don't get discouraged. You just go back the next day and try again. Improvement comes from building fitness and sometimes digging deep and finding a little extra gas to push a little beyond the level you are at. There will be ups and downs, but you want to have an upward trending trajectory. If it helps to motivate yourself, reward yourself with a little treat when you reach a milestone. I personally find that intrinsic rewards are best. Setting a challenge for yourself and reaching it just feels so good. The things you appreciate most in life are those for which you have to work. You are going to be successful in making your big comeback. Slow and steady. It's going to take time, but you will get there.
Boobiesister, I think you should have the capsulectomy. When the entire capsule is removed, the implant is removed as well. You can have a replacement implant inserted during the surgery. While it is possible for you to experience a second capsular contracture around the new implant because of your body's response and the radiation history, you probably have a greater probability of not doing so. You can do things post-surgically to help reduce the likelihood of capsular contracture, such as PT exercises and taking the drug Singulair. You will need to talk to a PS about your risk for a second contracture occurring and potential preventative strategies for you. Other health conditions like diabetes, being overweight, smoking etc. would all increase your risk, if any of these apply to you. Another consideration is to have perforator flap reconstruction. Capsules don't form around autologous tissue. This is a long surgery with a longer recovery, so not a trivial decision. If you were in Toronto, I could recommend PSs for you. Are you consulting with PSs at a top Vancouver cancer center, or is your tx outside of Vancouver? Capsular contracture can occur with breast augmentations. You want a PS who has good experience with recon capsulectomies on radiated breasts. Perhaps you can phone some offices and inquire about PS experience with your condition and then get another referral. I would want to ask the PS directly about his/her complication rate and percentage of successful second implants. Bear in mind that sometimes complications are directly attributable to the patient, but a lot is riding on surgical skill in avoidance and intervention of complication factors. Not only are you experiencing pain and discomfort, negative psychological and emotional trauma from the distorted appearance and feel, but you are probably holding that shoulder up higher. If lovevt is checking in, she can attest to how this will cause longer term issues with posture, back pain and even hip issues with the misalignment. If you don't want to continue with reconstruction, you could have the scar tissue and implant removed and go flat or wear a prosthesis. Best of luck to you in resolving this issue or living with it, whatever you determine is the best decision for yourself.
MarieBernice, I think it is worth doing whatever you can to avoid getting lymphedema and you are not being an alarmist. Each specialist will have slightly different information, avoidance strategies, techniques and exercises, so get the most out of your appointment with recommendations, suggestions and what to look out for. You will not have wasted the money, even if you don't have stage 0 lymphedema.
Mary, I am so glad you are having a great beach vacation and walks with your family. Your mental attitude and strength is inspirational. Half of this battle is mental outlook. You are going to do fine through tx and moving beyond. Enjoy the rest of your vacation!
Have a great week, sisters!
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I had BMX the end of April and I just found this most helpful quote from Dr. Susan Love because I continue to be experiencing a combination of numbness, pain, pulling, tightness even after Gabapentin increased to 1200mg/day and several myofascial therapy massages. I guess I better make friends with my numb'ish chest as we will be life long companions. I noted that she did say 'usually' so some may not experience this numbness for very long.
After mastectomy (with or without breast reconstruction), you are likely to have temporary soreness in your chest, underarm and shoulder. You will be numb across your chest (from your collarbone to the top of your rib cage). Unfortunately, this numbness is usually permanent. - See more at: http://ww5.komen.org/BreastCancer/MastectomyTheSurgicalProcedure.html#sthash.5zJbrE2t.dpuf
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magic light, I have regained a lot of sensation since BMX 2 months ago. I can feel my sternum and most of each breast. The inside edge of each breast is still numb. I can feel everything from my collarbone to my breasts, and don't have much pain to speak of. Just discomfort sometimes with TEs.
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Audrey: Thanks for the positive feedback and I'm hoping that with the meds and MFR I'll soften the fascia that pulls from all angles. I am really struggling to feel like my body is friend rather than foe. Today is a pretty good day in that the feeling of needles poking at me has significantly decreased since I increased my Gabapentin. I'm hoping this feeling lasts. In fact feel well enough to go for shopping trip tomorrow. I say trip because I live about an hours drive from a small mall and even a Trader Joe's. So big day tomorrow with my SIL.
I am glad that you are doing so well post reconstruction with TEs. Good news is always welcome.
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thank you Downdog. I have come to the exact same conclusion. I am lucky to live in an area with many opportunities for beautiful walks and light hiking.
Today i took 2 separate 1 mile walk/hikes. The second had a great long hill. I am so out of shape it was nearly anaerobic. I pushed myself hard. But irecovered quickly and was very proud of myself. I had family with me and they were very proud too.
Thanks again for your always sound and inspiring advice.
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Good for you Katy!!!! That inspired me to go get on my stationary bike for 3 miles! Then some stretches on my barre!!
Here I go!!! Hugs to you Katy!!! Love, Bunnie
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Bunnie! Yay! I'm so glad my loud complaining inspired somebody. It did (eventually) make me feel better, physically and mentally.. I will try another 3/4 easy walk later today. Let's keep going!
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So Katy I assume those are trophy cups instead of the wine goblets I first imagined !!! LOL xoxxo
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actually, let's have some very expensive champagne and drink it out of huge trophy cups!
A toast to all of us warriors today! Maybe not fearless warriors, but warriors nonetheless
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OMG!!! What a fabulous idea!!!!! When and Where sweet lady?!?!? Love and hugs, Bunnie
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Also thanks to your encouragement I posted 3 miles on the stationary bike and the stretches on my ballet barre felt really good!!! I plan on a healthy yum salad with my goblet tonight. My MO prefers I have only 3 glasses a week
soooo the bigger the better)
I feel the need to congratulate myself on my accomplishments... I may be really sore tomorrow but I'll be back on the bike Thursday !
Waaaay too hot outside here for walking.....so you enjoy those walks in the beautiful Great Northwest!
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here is one of the places we walked:
Very convenient, those picnic tables. I needed lots of rest stops
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