Bouncing Back
Comments
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http://www.dslrf.org/breastcancer/content.asp?L2=1&L3=6&SID=132&CID=1146&PID=0&CATID=19 try this link ladies for an article on the test Fran was talking about.
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The test is CYP2D6 that Fran is referring to and I will be asking my doc about the test on my next visit. Thank you Fran!
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I had it. It's a simple blood test. It showed me a strong metabolizer. I was very happy to find that out. Some people fail on tamoxifen and it could be because they are poor metabolizers.
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Oh gosh i think i am scared. Saw my new MO just now. Love him...seeing ortho later for the pain in my left hip.....he thinks I have good story...I increased my exercise then pain started...but says i will need a scan..not just xray...it hurts mid left buttock doesnt run down my leg. Hurts to walk. Not much, alleve makes it hurt less...
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Fran
I'm sorry you are having pain. I hope the scan is soon and you get good news. I'm glad you like your new doc -
Wintersocks - what are they suggesting for you recon wise?
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Lily,
My lovely breast surgeon has said it is a huge huge op, and her advice is that I do not consider it at all, She told me (surprisingly) that most women in Britain choose not to reconstruct.
She has not refused to do it, but will leave the final decision to me. Whatever, like you I have a number of other health things going on and she says it would not be done because of that at the present. Her and I will review things in due course.
How are you at the moment? Do you think you will go for recon?
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Whew ortho did xrays they look good, she thinks I have tendinitus. Have instructions for stretches, alleve, rest for 2 weeks. Guess the fast walking was too much. Have to stick to elliptical or water stuff after this. I feel better now
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Yay Fredntan! Good news!
I cannot have implant recon or really shouldn't because I had radiation. I cannot even imagine what my left pec would feel like with a tissue expander in there.
I don't really want DIEP. I don't like my stomach or my hips and am not anxious to see them relocated as breasts. Unfortunately they have stretch marks on them and other unpleasantries. The reason I'm going back and forth right now on it is that Dr. Marga the wonderful surgeon says she might be able to get some lymphatic drainage for my lymphedema arm. I have been just fine wearing my foobs thus far for the most part. I thought I'd have to get a whole new wardrobe, but ended up only having to get rid of a few things. -
Yes! Great!!!
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Great news, fredntan! Yay!
I had chemo, then umx, then rads (MONDO tissue damage), then waited 9 months and had bilateral DIEP. I'm thrilled with the results. No, they don't look like the breasts God gave me, but for almost a year I had to wear a bra with about 2 pounds of silicone in one side everywhere I went. Maybe if I'd been flat it would have been different and more comfortable, but my umx scar was lumpy, burned, dog-earred, and ugly. I really wanted to reconstruct.
My tummy's flat for the first time since I delivered full-term twins 31 years ago. My "breasts" are soft, warm, and fit beautifully into a bra. During the surgery my plastic surgeon cut away a lot of the burned, adhered tissue that was left from the radiation, and relieved a lot of pain in my chest. I had no expander placed during the mx. Yes, the DIEP surgery was lengthy and I was off work for five weeks, and I had another, smaller surgery last week, with one more planned for December. But once we're done, we're done. No silicone inside my body, no re-do surgeries a few years down the road.
All this being said...everyone's different. I totally respect anyone's preference to NOT reconstruct. My mom, in fact, had one mx in her 60's and another one in her 70's, and she's proudly breast-free. My sister had a bilateral mx last year and is still considering her recon options. But if anyone's considering any kind of recon, opinions from several plastic surgeons would be a smart way to go.
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Hi there,
I had a prophyy on my left (6mos after my mast. & tx)with immediate bilateral implants. This was my only option since I am on the slim side.
I fet it was important to me. I live in a tropical environment, and did not want to have to deal with hot prosthesis. Now i just wear camis, and haven't worn a bra in 8 yrs!
worked well for me.
I think everyone's experience & reason to "do" or " not do" recon is very personal and unique. I would say though, get a excellent PS and see the docs before and after pics, and thoroughly review your options.
Good Luck!
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I "interviewed" several plastic surgeons and went with the one who was most person focused, and forward thinking. I decided against DIEP as have a vertical scar so could only use half my belly, i did not like throwing the other half away!
So i have just had a reduction and liposuction fat transfer and adhesions cut free from my ribs thanks to radiotherapy.......need one more op to free more adhesions and next fat transfer then after that may go for BRAVA too to hopefully reduce number of fat transfers as together with the plastic surgeon i hope to create a breast shape on other side.....
Had the removed tissue biopsied as was sure it was more than just fatty tissue as MRI had said, and it was full of cysts, thankfully b9.
Its not an easy choice and means surgery every three months but it feels right for me although it stirs up PTSD again.....
Wintersocks couldn't you have a lat dorsi? -
Love hearing all the input about reconstruction. I am within 9 lbs of my goal and will than decided what look I want as well as what I feel is healthy for me. Met with surgeon at MD Anderson and told him I just wanted "fat man boobs"....I had the 34 DD and now my slimmer me just needs a little roundness made out of the scares on my chest. He was at first taken back, but than was all for it. Says I have enough loose skin to fill through fat grafting and will fix the scare lines. Says it most likely will be a day surgery....and need two other fat grafts (Liposuction of fat from thighs than transferred to chest) to complete filling!! So I'll see what and if I do anything...but thank you all for sharing your stories.
Jennyboog...I am so sorry your doc spoke to you in such a manner...I had a simular experience and his words still rattle me at times...no matter how many people say he was unprofessional to say such things...I'll not share as I don't want it rattling around your all your heads either!! So thankful we can share with each other and see how our "sisters" come to our defense...love it!!
Fredntan..so thankful you have figured out your pain and have a new workout plan....keep exercising!!
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OOPs...sorry meant scars not scares...all though the scars are scary!
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Pain pretty much gone now. No exercise. I can do water stuff. Need to try out gym this week. Hate getting wet
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Wintersocks,
Hi there. I see you are in the UK and perhaps they haven't perfected the procedure there yet. I had mine done at Johns Hopkins in Baltimore, and they do TONS of them (sad to think isn't it?). I had gone for a second opinion to George Washington U in DC and that surgeon said she rarely did them, it would be a very long surgery and she needed another surgeon to assist her. When I asked how many of them she did, she replied, maybe 2 to 3 a month. My Plastic Surgeon at JH told me she does 2 to 3 A WEEK! It IS major microsurgery and the surgeon needs A LOT of experience to do it, but I am very happy with the result. Much more so than my saline implant on the other side. Plus I should never have to have it replaced, which with an implant you will need future surgery later to replace it. The DIEP is round and soft and very natural feeling. The saline implant to me is kind of "crinkly" when you feel it.
So that said, the DIEP is not for everyone, but anyone considering it be sure to do your research and ask how much experience your PS and the hospital doing it has. Recovery is definitely longer as you have the large tummy incision as well. Do your research and check the Reconstruction page here.
Good luck,
Sharon
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Sharon,
I think the surgeon and hospital are very experienced. I think the issue is ME, for some reason (perhaps because I appear to be later stage?) she mentioned in my last 'copy to patient letter' that 'G****** know she is at future risk from chest wall recurrence'.
Or is it my other health issues which are considerable? She said I should try to enjoy a period of relatively decent health - She seems very very reluctant for me to consider any recon and told me that many women live very well without a recon.
Lily, The Lat Dorsi, she did mention to me, but as I have had a very physical job she did mention it might impede my movement (I am a gardener).
I really trust and like this woman bc and can only think she has my best interests at heart, certainly she said there is no way she would be doing it now given my other health stuff (a major op coming up)
I am seeing her on the 19th. I will press her on these issues, although it makes me feel anxious in doing so. I keep thinking she thinks I will get secondaries and that's why she doesn't want me to do it.
Here on the NHS, all women have to be offered reconstruction, that is the government guidelines. But offered of course is not the same as uptake.
Soooooo
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Recurrence on chest wall? Did you have it there before? I hate it when doctors say that as it seems like they are playing God and i truly dont know how they can truly know?
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Lily55,
No I have nothing on my chest wall, as far as I know. It was written in my last copy to patient letter.
I guess she 'knows' as she sees lots of patients with bc, and perhpas has an idea of how the dx is likely to go.
I don't know I am only taking stabs at what she might be thinking.....
I have no reason to question her judgement. She is a great doc. I feel very comfortable with her and I have seen a lot of docs!
All I know is that I am mentally and physically exhausted with everything......... medical/ex's/kids etc etc....
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Well i think thatis wrong, NO doctor can really know that after all they also tell us wwe are all individual, the two things do not go together!!!
I am told t every visit i am very high risk of recurrence so precisely how helpful is that???!! What is the point of telling me? And their stats aree 50-50 they say so how about me being in the healthy half if not emotionally destroyed by their pessimism and negtivity......its like me teling them their odds of being in a car crash on the way home!! Will that help them drive more safely? They are only guessing in reality, bit like spending an hour on a fruit machine in a pub........
Honestly you have enough on your plate.....i am damn mad at her for writing that.....sending you a hug and i am still angry for you........ -
Hi again,
Those darn docs and their detachment issues. I "get" they think mostly by statistics. They almost have to. But I think personally, part of a doctor's training should include ONGOING sensitivity training and RETRAINING so they don't forget that they are dealing with human emotions and not just a "thing" needing a service. So many don't realize (or forget) how we cling on to every shred of hope we can get, as well as every negative or scary thing they say as well!
Since I don't know your age and otherwise physical condition Wintersocks I can only assume they are factoring those in to their advice. I wouldn't push this surgery on anyone. It is not for everyone. But it IS a good surgery, and when I mean experience with it, I mean if that hospital does a LOT of them. JH (again unfortunately) has numerous surgeons that do this procedure several times on a weekly basis, so they are leaps and bounds ahead of the docs and hospitals (like GWU) that only do them on occasion.
And you are right about it all being physically and mentally exhausting. Shoot, we are fighting a war within our own bodies, but have to go on with our "normal" activities in the process!
Sharon
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A few years ago, I watched a movie with Emma Thompson named "Wit." It was about a women dying of ovarian cancer. It was incredible in its accurate portrayal of the medical care of the character and Emma Thompson's exquisite interpretation of a cancer patient. Some of the caregivers were sensitive and compassionate, others were bumbling and stupid and compassionless. I saw the movie before my BC diagnosis, and I don't believe I'd watch it now. It's just too real.
My son was in medical school at the time, and I called him to say he needed to rent the movie and watch it right now. He said, "I've already seen it, Mom, they screened it for us in class." They also had seminars during which patients and their families presented their own cases and their real-life perspectives of coping.
I believe medical education is changing. Whether or not it sticks as a physician establishes his/her own style of practice is a matter of individual style.
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Sharon and Lily,
I am 52. I am not in such great shape. I am currently waiting for a large ovarian cyst to be removed, plus an oophrectomy. my bowel also needs pushing back too and other bits n pieces up there. I am not overweight.
The thing is I do like and trust this doctor and believe she is working for what's best for me. If she says I am at risk for future chest wall recurrence then - unfortunately, I probably am - but it is not written in stone, I think the word here is 'at risk' . I don't feel she is viewing me as a statistic, I think she is very warm and caring and honest. I want her to be honest. Of course I can always get a second opinion. She has not refused it, she merely thinks it not in my best interests to go ahead.
I would like a recon for sure - not at the moment. I think I am too emotionally and physically fragile right now.
selizabeth - that movie sounds interesting - dare I watch it??
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Wow, ladies. I read and follow threads like "Bouncing Back" to help me have hope and I truly respect and care about everyone who posts here and know honesty and sharing is why most of you come here. I have to say, though (after not posting since just after my diagnosis and just lurking for months thinking maybe coming to this site wasn't healthy for me, but not being able to stop) that reading this particular thread has put me so far backwards from where I was. If I am reading correctly, it says in more than one place in this thread that recurrence is almost inevitable for stage 3. Am I fooling myself that this cancer may be gone for good and I have a good chance of it NEVER coming back? Sounds like maybe I am. I finish radiation in 5 days and did awesome with chemo and am looking at having at least my remaining ovary out if not also my uterus and then getting implants when my skin is ready. I have tissue expanders now and my skin has done very well. I was feeling ready to move forward and get back to normal and live confidently and with the knowledge that I have done aggressive treatment where I have been a trooper and taken good care of myself. Am I really doing all of this for nothing? Do many doctors and many of you really believe that we are all destined for doom? Is it really not a matter of if but of when? Please tell me I am mistaken and reading this wrong.
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LKSHER, I'm sorry...this thread has been dealing with the issue of recurrence since some of our oncologists have said some incredibly insensitive things to us. One or two oncologists have inferred that recurrence is inevitible, and we're all reacting to that, mostly with disbelief and anger.
My onc never said anything about recurrence being unavoidable for me. My whole team seems hopeful and forward-thinking--if I were going to fall over dead soon, why would they have spent so much time and effort arranging for me to have recon?
Good for you to have battled through all the chemo, radiation, and surgery! And yes, with all the aggressive bombs you've dropped on BC you have a great chance of leaving this wretched disease in your rear view mirror. Take heart, you are not fooling yourself. Move forward, get back to normal, and live confidently!
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Thank you, Elizabeth. I always love your posts. I am just having trouble grasping why a doctor would say that unless they know something we don't know? My team seems to think I have a great chance at a long life. How can the attitudes be so different? My aunt (not blood related) had 20 out of 20 positive nodes 8 yrs ago and is doing great and drinks vodka daily....Hope that helps someone here.
Also, I did get an oncotype done and mine was 15 or maybe a bit lower. I know it's different once you are node positive, but I sure want to find a way to have that be something I feel good about.
I sincerely hope everyone here can find peace and healing and that the treatments coming soon mean an end to all this horrible fear. -
I have read that a diagnosis of breast cancer is like suddenly finding a rogue elephant in your living room. You can't think about anything else. The elephant is crashing around the room, breaking lamps, crushing the sofa, making a loud mess of things.
Gradually the elephant shrinks into a tiny mouse that lives in the corner. You know he's there, but for the most part, you ignore him.
Once in a while, when you have an unusual pain in your back, or your hip aches, or your eyelashes itch...whatever...the mouse grows into a wart hog that bangs around the room, making you remember the elephant. And then, God willing, you realize the back pain is just a normal ache of living and the wart hog shrinks down again into the tiny mouse in the corner.
I believe this is the process of our breast cancer diagnosis and treatment. As a friend said to me, "someday soon this will just be a thing that you had to go through."
Yes, some of us will deal with breast cancer again. Many others of us will not.
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Hahaha! "eyelashes itch" made me laugh. Thank you, E.
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LKsher,
I am sorry if some of the postings have upset you, that is not good at all. For the record I do not take the view that my oncologist, is a terrible doc, nor do I take the view that she has been 'insensitive'. I merely take what she says and choose to believe her that a recurrence for me is a possibility, because I trust and like her. I neither feel 'disbelief' or 'anger'. This is cancer after all and it is unpredictable. Look at your Aunt, doing amazingly well, yet people with lesser dx's do not. I just want to learn to live (and struggle to live with that thought of uncertainty/unpredictably). Of course I feel frightenend and upset and sad. But not angry. I actually have never felt 'angry' about this cancer. I did find your posting incredibly sensitive and moving and actually uplifting and I thank you for that.
At other times, I feel a bit more hopeful. Although the fact that my onc does not want me to have a recon, might infer from selizabeths statement that I am the one to drop down dead! (ie, they don't want to 'invest' in me)
Why Oncs attitudes are so different is unfathamable to me too, I don't know why and it makes me confused, but I have to go with what is in my mind and heart; presently, I just don't know what is going to happen. And I have to find a way to live with that, mainly for the sake of my children. This is not 'negative' thinking. I still go about my life as I always do working, studying, eating, sleeping, laughing, walking, although walking is more in the shadows right now.
The truth is we all deal with the dx's in our own way, those ways are numerous. What ever gets us through is wonderful if it works. But I don't want my reality to be diminished because others hold a different view. That is theirs and this is mine.
Let's try to support each other in that at least.
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