October 2014 Surgery Sisters
Comments
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sandra thanks for all the advice on the bra and implants I will keep you posted on how I do. I did get the genie bra and it is working nicely. Thanks for the advise. I get permanent implants in May so I will keep you posted! Thank you so much for replying!
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Hopeful, I have twelve .14 oz sample size tubes of Aquaphor if you'd like them. I just tried it once and hated it, it felt like smearing Vaseline on my chest. These are a great size to throw in your purse. If you want them message me your address and I'll stick them in the mail.
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Caroline, that is very thoughtful of you. There's no rush as I won't be in radiation until May, most likely. I know the stuff is recommended so would like to give it a try. If I can't stand it either I will continue to pass it on. I'll PM you with address.
You must be through radiation by now, I imagine? How did it go?
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They'll be on their way to you tomorrow Hopeful. I think the majority of women that I've read have used the Aquaphor, I just hate anything like Vaseline...yuck! I finished a week ago with no problems other than fatigue the last two weeks and really red skin. It hasn't peeled and doesn't look like it will at this point...I wish it would so my skin color would lighten up on that side.
I started LE therapy today after going last weeks for measurements. It's pretty relaxing, not quite like a massage at the spa but nice. The therapist is massaging the fluid up my arm and then down my side into my leg. After she finished I was able to straighten my arm out all the way with no pain...it really works! And my case is so mild that she didn't have to wrap my arm as she had talked about doing last week. All I have to do is keep an eye out to make sure my left breast doesn't get bigger from the fluid going there...yikes!
I hope everyone in the Northeast stays safe and warm!
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Hopeful - I so very much hear your angst and can definitely relate!!! Let me ask you a question: what if, during your mx, you choose to do a SNB. If that SNB comes back with only ONE positive node that is less than 1.5 cm and does not have any extracapsular extension, and the other 1-2 nodes were negative...would you consider keeping radiation 'in your back pocket' for potential use in the future? Remember that radiation is just for LOCAL recurrence, so if the systemic therapy is working effectively (which it sounds like it is), perhaps you could decline radiation right at this moment.
I ask you that because now, after having LE secondary to my full ALND, I wish I could take it back. I wish that I would have taken a step back, thought about the big picture and trusted that my one positive lymph node did what it was supposed to do and then would have NOT done the full dissection. Systemically I am sucking it up with the nasty chemo - this last round has been the absolute worst, but I tell you this - I will NOT consent to any radiation at this time. I will keep it in my tool box in case it is needed later....for local recurrence.
Just some food for thought.
BTW...got my Pottery Barn catalogue today and it had early gardening toys! Woo hoo! Today was an amazing 62 degrees here in Colorado, and like you, I am dreaming of getting my hands in the soil and beginning to see things grow. :-) Listen to a Nicole Nordeman song called "Every Season" - it will speak to you.
Love and hugs,
Robyn
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Robyn, you've raised some really good questions. Thank you so much for sharing your insights.
I've been told all along that if I have lx. radiation is a MUST. In fact, when I spoke with the RO last week and asked if clearing the node prior to surgery would allow me to have less radiation to the axilla her response was an extremely emphatic 'NO.' She wasn't all that optimistic that we could give the supraclavicular area a pass, either.
I really don't know how an mx. without rad. would play out and that's something I'll need to raise with my BS when we huddle next month. I really feel like I'm between a rock and a hard place right now.
We do plan to do a SNB with a frozen section. If the node's (or nodes) positive we'll do ARM rather than the more traditional approach to ALND but based on your experience I will ask about maybe stepping back from automatically proceeding to the ARM if there's anything in the nodes. It's really tragic what women have to live with, long term, all because of one positive node.
Long and short of it is that I'm mulling over all you've said, Robyn, as well as the others here. I truly with this weren't hedged round with very many unknowns in terms of responses, SEs, recurrences, etc.
I'm glad to hear you got a little bit of that Spring in January effect, too. We had a few days that were sunny and mild - enough so that my first primrose is blooming (it's shivering now) and I can see the tips of a few bulbs. A little bit of decent weather goes a long way towards coaxing hope out of its cave at this time of the year.
Hang in there, Robyn. I wish we could all reach out a hand and physically pull each other through this slough of chemo and radiation and fear but I do know that the kindness of the women on this board is the closest thing to that.
Hugs and prayers
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Robyn,
I'm so sorry about the LE. Remember, technically its possible it would have happened after even the one SNB, this is the dilemma we all face....there is no damn way to know the answer to the 64K questions: Is there or isn't there a cell or a few cells somewhere that escaped despite surgery? And if there is, what is the chance that they will still cause trouble after adjuvant treatment? Will waiting to know this answer mean less effectiveness from treatments?
When I wanted to take a pass on RT, it was because I was dealing with DCIS. I figured I had an 87% chance it was all gone from surgery (I was also not a mother at the time) and even if it did recur, it was still non-invasive so I could do the RT then. With this cancer that I have now, I was also willing to give a pass to the chemo due to the fact that 96-98% chance that it would not make a difference in outcome and because lobular carcinoma is known to be less chemo responsive than ductal--which the oncotype test does not differentiate. Now I am doubling down on hormone therapy--three weeks into Zoladex, I have started to have hot flashes. I am legitimately sad to have to hit my body with menopause before it was naturally ready but rationally there is no way I could have another child at this point. I'm hardly the only woman who has had to give up her reproductive hormones for a better outcome so its understandable but non-negotiable. Trying to acknowledge my emotions while being clear about the bigger picture on a daily basis. Data has clearly shown that OS plus AI can be up to 35% more effective than Tamox and that more than makes up for skipping chemo.
You have already been through more than I have, and still have more to face, so I hear you on feeling like you want to be done. Recently spoke to a friend who is BRCA pos, on her second BC who unfortunately skipped a mammo prior to second dx. She had to do an ALND and TC and has to deal with LE now. She says that's where she kicks herself for missing that one annual screening--that maybe it would have spared her the ALND an LE. But we can't even know that for sure--maybe the tumor would not have been seen on the skipped mammo anyway, maybe the ALND would have been necessary anyway, maybe the LE would have happened with an SNB--BC is so unpredictable that its understandable to want control enough to even just think she could have made a difference when maybe she could not have.
You still have one round left no? And would they treat you with LE? Would they give you time for that to resolve? I think maybe its time to just deal with the present, put the decision aside to the extent that you can while you deal with what your body needs right now. And listen to it as best you can while it heals up from what is already on your plate.
The B of all of this is that not only can you never know for sure what the right treatment should be or was, but that both the cancer and the treatments are unforgiving. This is what I understand now having gone through it. You have to make multiple terrible choices. HAVE TO make them, because no choice is a choice. Which is the least crappy is pretty much what you are deciding, because neither choice is what you want. We have already cut off our breasts. The joke of it is, often that turns out to be the easiest part.
I would mostly caution against making any decision when you are down. You have time. Just focus on getting through where you are and leave that choice for when you are stronger and your mind and body are more clear.
Hugs and prayers to you,
Jen
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Dear Jen,
Thank you so much for your words of wisdom. I agree that I should not be making decisions right now in the middle of my chemo. I still have three more rounds of TC and then finish out a year of herceptin. Thank God the herceptin does not have quite the same SEs as TC - I'll be able to grow my hair back, have my exchange surgery, etc. You are so right, I need to focus on getting through these last three rounds of the tough stuff. The rest of the decisions can come at a later time this spring.
It is so incredibly frustrating that no matter what decision we make, none of it is what we really want: no cancer. I think back to this last summer when I was so enjoying the outdoors and camping and just loving life. What a difference 6 months make. Sometimes it is hard to remember what normal even feels like. So instead, I allow myself to dream of this upcoming summer and all the activities I plan to fully take hold of and enjoy. I look forward to our cruise next December and imagine how I will look with a cute shorter haircut and how much we will enjoy our time together as a family. We all have to continue dreaming of the positive, living above the negative and keeping our eyes focused on the finish line. Otherwise...it becomes too overwhelming, depressing and discouraging.
I so appreciate yours and everyone's words of loving advice, encouragement, wisdom, humor and acceptance. We will all get through this together, and I honestly believe our lives will somehow be enriched by the experiences we go through.
Love and hugs,
Robyn
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Hi All,
I have taken a few weeks off-just so busy with RT and then if I sit down at night with my laptop, I'm out like a light at 8pm. Fotunately, I have had some bonus days with the 30" of snow. I was supposed to finish RT tomorrow-but the machine broke down Monday and with the storm in Boston, it couldn't be fixed until today, earliest. So end is delayed until Tuesday. It is probably a good thing, under my arm was pretty red and this will give the skin a few days to recover before the last few rounds. Radiation has went well- I used several creams-but mostly Jeans Creme(Amazon)-its mostly aloe and vitamin E. I have had pretty healthy skin-a little red at this point, but it hasn't broken down. A little itchy-but used 1% over the counter steriod creme that helped (as per RO). Just so looking forward to not having the drive everyday, but am going to miss seeing Boston so frequently. Have to make plans to be there every week to investigate something new. I think it helped to start moisturizing before RT.
Sandra-so sorry to hear the news! I have been involved in enrolling people in "Be the Match" programs for several years. The main thing when looking for a donor is to be sure your center belongs to the worldwide match rather than US. My friend's daughter found a 100% perfect match within 2 mos. from Germany. Truly a fluke-considering they have no known German ancestry. She is three years out and doing fantastic. But again-young. You can look online to locate worldwide match centers. Again-don't always believe the docs.
Good luck to everyone foraging the way for this round of exchange surgeries- take good notes for the rest of us. With radiation-I am looking at late April/early May. Want to be done by summer and that will be one year from the correct diagnosis.
I went to PT to consult on avoiding Lymphodemia right after surgery. They said to avoid BP or blood draws on the operated side. Sandra had provided a link and I got some wristbands to remind them for the next surgery. I was fitted for a sleeve to wear when I fly.
Those doing chemo-It's the worst-after the tough part is over you will feel much better-but it is a battle everyday to be at your best. I kept working to try and stay on my toes. There were days it was tough getting out of bed. I did get a bad case of thrush-which there are miracle pills and Magic Mike mouthwash to relieve all of the symptoms. Losing your hair is devastating-but losing eyebrows and eyelashes was even worse. I never figured out how to attach fake ones. Almost lost toenails and fingernails and still have neuropathy, but at least know the chemicals were highly effective! It is lifesaving! Hang in there! See if they offer free neck or foot massages while you have the infusion. That was great and helped the time pass.
Hoping all have a great weekend and are cheering for the Patriots!
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I think Jen and Robyn had hit on the one aspect of all this that is the worst - not only do we have to choose between truly horrible options but we have NO guarantee of their efficacy, either short or long-term. This is what's bothered me most all along, that I can take my body from healthy, whole, vigorous and strong and subject it to cutting, radiating, poisoning, all the long-term side effects - and I STILL won't be able to TRUTHFULLY say that the cancer is gone. To think otherwise, I believe, is deluding ourselves.
I'm glad I'm using an AI right now and have fairly strong assurances of its efficacy on my particular tumor. I wish there were some way of accurately predicting my system's response to any of the other treatments on offer.
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All these recent posts are so true, and accurate, and meaningful...that is one of the things I ask myself and/or think about everyday--do I HAVE cancer? Or now I HAD cancer? What's the appropriate way to think about it ? I have...I had..I'm a survivor? Or what? And I am a really positive person yet that "terminology" bothers me every day!! I have at a minimum one year + and likely 5 more surgeries ahead..so seems strange to just think of it as "past tense" as we are still living, breathing it every single day. Boggles my mind. And Robyn--I get you...just thinking about the joy of the "pre-diagnosis" days, sigh..and I still consider myself one of the lucky ones w/out chemo or rads...***sigh***
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I just returned from seeing the LE specialist...and sobbed the entire way home. My heart is broken, as I look down at this bandaged arm from the fingertips all the way to my shoulder. I don't know how long I will have to wear these bandages, I don't know if once the swelling subsides, whether I will have to wear a compression sleeve every single day for the rest of my life. I am trying so hard to keep my eyes focused above and beyond my circumstances. Not easy, but as I sit quietly and focus on the love and grace that God has given me, I feel a peace surround me. The words to one of my favorite songs, that I lead a couple of weeks ago, come to mind:
You call me out upon the waters, the great unknown, where feet may fail. And there I find You in the mystery, in ocean's deep my faith will stand.
I will call upon Your name, and keep my eyes above the waves. When oceans rise, my soul will rest in your embrace. For I am Yours...and You are mine.
"Oceans" by Hillsong
Let us run this race with endurance, the race that is set before us. Looking neither to the left or right, but straight ahead at the finish line.
R.
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(((Robyn))) I LOVE that song! Keep singing it. Do you know "walking with me all this time" by Britt Nicole? You are NOT alone! Why all the bandages? What happened at that appointment that has you all bandaged up? I'm sorry, take care.
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Dear Robyn: What beautiful lyrics - I'll have to find a recording on line and hear it all the way through, ditto Hummingbird's suggestion.
I'm sorry your appointment was so very, very discouraging. I hate what cancer does to us - mostly via the treatments that are supposed to save our lives but have just as great a chance of shredding our quality of life. I really wish that Komen or the ACS would tackle some of these issues.
Someone over on the LE board was talking about a pump that seemed to be doing wonders for her. If you haven't read that, you'll probably want to. Of course, the equipment is probably expensive (even to rent) but I'd hope that insurance would cover most of it.
To me the prospect of having to wear a sleeve is really daunting - even if only when traveling. It's yet another thing that sets us apart and signals to everyone else that there's something different.
All of this is part and parcel of why I was so upset with the two surgeons who dismissed my concerns about LE. I feel as though they glibly lie to us in order to get us to agree to the ALND. (And then if you do have problems, it's probably because you were non-compliant.)
Sorry to sound so angry and bitter. I don't mean to bring anyone down or hijack anyone else's needs. I do think it's horrible what women have to go through with this and it really makes me angry that it's still such a huge issue in this day and age. Robyn should NOT be dealing with this - nor any woman, in my humble opinion.
I will now get to work and put on some uplifting music and offer up all of our needs and concerns rather than just ranting about it.
Blessings, sisters.
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Thank you for your understanding, friends. I have to wear these bandages 22 out of 24 hours in order to get the swelling down. Once it is gone, then I can be appropriately measured for a custom sleeve/gauntlet. I will definitely look into the pump and if it works like everyone says, then if I have to, I will buy it out-of-pocket.
One step at a time. I pray this swelling goes down quickly and that it can simply be managed with wearing a sleeve during exercise travel. Those are my hopes...
Keep fighting and praying.
R.
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Robyn .... You are doing what you need to do ----> help your body move the fluids along. Is the LE specialist a "hands on" type? Are you scheduled to have massages? (Hope so)..... One foot forward... Will add a special prayer for you tonight. Maggie
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Amen Hopeful.
Hugs Robyn.
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LeeLee,
I was told by my breast cancer center that there is no cure for it, breast cancer is a chronic illness and the best we can hope for is to be NED, No Evidence of Disease. Once you have breast cancer, you always have it...just hopefully you are in remission (NED) for the rest of your life.
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Sandra, that's the b...tch of it, isn't it? We can each go through our own particular hell treating this but never have any assurances. All this talk about fighting it and beating it sounds to me like whistling in the dark. Or do doctors really let women think that they WILL be cured if they just throw every thing at it?
I know we've all got it better than you do right now, so am trying to keep things in perspective. But the fact of the matter is that none of us will ever know if we're fine for 5 days or 5 decades.
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As a side note to this conversation, I was filling out a health questionnaire yesterday for a health drive at work and one of the questions was one of those "check the appropriate boxes below" of health conditions you HAVE (not have had) and there is the box for cancer. I HAD TO CHECK THE BOX.....which almost made me cry. I want to believe the cancer is gone, that surgery took care of that for me, but I still had to put an X on that stupid box!!!! -
Hummingbirdlover - that's pretty sobering, isn't it? It's still a bit of a jolt to fill out a form and add the cancer dx.
A tiny bit of good news: I've been having problems with the ankle that I broke several years ago. I've had pain on and off ever since then, mostly once the weather turns cold. There was a lot up take showing there on my bone scan in Sept. but it appeared consistent with the still-healing fracture. However, it's been so much more persistent this winter and especially at night that we decided to check it again to make sure none of that was due to lesions. I had the x-ray yesterday and just got word from my NP that it all looks good; post-fracture changes but no lesions. Yay!! I feel SO much better knowing that, instead of just telling myself that it's probably nothing.
I hope everyone else gets some sort of a lift today as we head into the weekend. Hugs to all of you.
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Hopeful, take all the good news you can get! Sometimes it's few and far between. I think we all have some form of Post Traumatic Stress Disorder after our treatment is "finished." Someday the medical community will realize that and we will be offered help routinely.
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Thank you, Sandra. Thinking of you and Mike.
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Ugghhh! So close to seeing the end in sight with Radiation ending Tuesday.....only exchange surgery to look forward to .....but wait no....can't enjoy the moment because I get a phone call from genetics...I have the BRCA2 mutation.
OK...I was the one who insisted on the testing...they said I wasn't a risk for this, so did not do the testing, and with no family history, insurance would probably not cover it. I insisted anyway...for the knowledge of my 4 children. My 21 yr old daughter had a lump removed a year ago and I wanted to know if this may be a factor.
Not the end of the world...and it is better to know the increased risks, but it is making me jump into some new thoughts and actions. They have already scheduled a consult with GYN Oncology surgeon to remove ovaries and one remaining tube, but I think I would prefer a hysterectomy-why leave a fallen uterus in a 55 yr old ? Then option 2-when I do the exchange surgery, go back to my originanal plan of having a mastectomy on the left side before that brews. I want to be sure they will do immediate reconstruction without a TE-don't want a 3rd surgery.
Weird feeling-I felt like these were cancer diagnosis all over-but need to remember I currently have no known cancer and am healthy and feel good. I really am feeling so much better everyday-but this was sort of a disappointment.
My children(all adults) will all be tested, with at least 50/50 chance of carrying BRCA2, but are thankful I was tested and are aware of the issues.
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Slavrich
Oh that sucks. But at least you know now, and have potentially saved your kids. Score one for gut instinct. I hope they can do the direct to implant for you.
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Hello Ladies, finished my first week back at work, it was very difficult. I am having pain accrost my chest and the side I had cancer on 20 yrs ago feels like it pulls tight when I reach up. The bad spot is healing slowly so maybe it will be healed in a month, just got out the last 5 stables holding that spot together Wednesday.I am now almost 4 weeks out and still having pain, that I don't understand so getting tired dealing with it. Sometimes you just get tired of dealing with all of it and would love to have some time out to rest. I see the OD Wednesday to see if I will be doing chemo, oh joy.
I am sorry to say cancer is with us for good. I was told 20 yrs ago that if I went 10 yrs out the chances of it coming back went to 5 percent, looks like I won the cancer lotto.
Robyn
I had limphodima, used an arm pump at home, it did work, insurance paid for it, back then it was 4000.00 .lymphedema can come on at anytime and go away, it is as unpredictable as the cancer, so keep positive as much as you can, your treating it and the outcome can be ITs Gone. Hang in there.When I made my decisions for treatment in 1995 I read Dr. Loves book on breast cancer. It said there are no guarantees, but as time goes on your chances get better and the goal would be that you would pass from old age, here's to old age!
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@ Revelle WORD.
Also--ask about physical therapy. I got some when my chest was tight and it worked very well. I have regained full range of motion now.
Slavrich--another sucky piece of information just when you thought you had the summit in sight. I am so sorry. I too insisted on BRCA from my new onc since I have an aunt who passed from breast cancer and this is two premenopausal cancers for me, but it came up negative. Of course, BRCA is just the gene they know about so, once again--the information is not all there. But I hope that your children are clear.
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Revelle, I was thinking about you and your staples this a.m. I hope you're getting LOTS of rest this weekend and will get some answers and solutions to the pain a.s.a.p. Pain, as you know, is wearing in and of itself, both physically and mentally. I'm crossing my fingers you won't have to do chemo on top of all this. Enough!
Slavrich, good for you for pushing for the testing, although of course it's very disconcerting to find out that you have the mutation and all of these other issues to face on top of the bc. You must be reeling at times.
Hugs to both of you and to all the rest of us sisters slogging through the badlands on this first day of February.
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Slavrich, good for you that you insisted on the testing. Hopefully your children will be negative but if not, at least they will know to do what they can to avoid breast cancer.
Breast cancer...the gift that keeps on giving even when you are told it is gone.
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Thank you for the support, I started here and I feel very connected so here I will stay. I undersand all of your hearts, we all have the right to complain, feel sad, get angry, and feel positive, we all feel each other. What I want to say is, I need the support you all give and I need to support all of you. Thanks for keeping me going, I know I may have come accrost negative in my last posting I didn't mean too but the truth is I am really angry about it coming back after all these years. So much of what I am feeling is the same, stats all the same I want to say OK what is going on. But I need to work it out. So sorry to come accrost negative because good things can happen. Support from sisters that know whats in your heart is special, thanks to all of yu for that.
Revelle
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