May 2018 Surgery Support Group
Comments
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Blessed--I agree with Ready. I am taking Anastrozole as I am in menopause. The first few days I felt joint issues. I don't anymore. I do take,it at night right before bed. I decided to not look at what others were feeling about this long term drug that will be a part of my life for at least 5 years. I decided that I am blessed that my Oncotype was a zero and I don't need chemo or radiation. So if taking this drug is my passage to continuing to be cancer free I will deal with it.
And muscle relaxers have been a godsend. I have found myself sitting or laying and realize I am as stiff as a board. It is a weird and new feeling. The muscle relaxers help me with the pain also.
Hope you all,are getting better each day. I feel I am.
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I’ve been on tamoxifen for 2.5 weeks. So far so good! I have not read much about the drug as I don’t want to stress myself out about everything that might happen. I asked my oncologist what side effects are serious and those are the ones i won’t ignore! Hopefully we all do well on it and have no major side effects
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Question for ladies with expanders...do you wear bras to sleep in? I've been wearing tanks with the built-in bras. Some are starting to feel constricting but the expanders feel like they need some support if I wear nothing. Just wondering what others were doing.
The PT exercises are definitely helping with my range of arm motion but my back pain is almost unbearable. The stretches feel fine while I'm doing them but about an hour afterwards my upper back is in intense pain. Today it hit me while running errands. I couldn't get home fast enough to my recliner and even dipped into the prescription meds it was so bad. Anyone have any advice for back pain too
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ljm33 Yes, I did wear a (zip down the front sports bra I found online) bra to sleep in for several weeks, because I had so much swelling, and it just felt better to be supported. I don't any longer. The tissue expanders are just generally uncomfortable all the time no matter what I have on. Sometimes, I feel a bit of a stabbing in a rib, other times just hard stiffness all over. They don't love it when I try to sleep on my side, but I manage sometimes with strategic pillow placement. My pecs are uncomfortably tight ALL THE TIME, and I haven't had more saline added since the 200 each side at surgery. I sometimes take 5 mg Cyclobenzaprine 1-3 times a day, and sometimes 10 mg at night, and that helps a lot.
My surgery healing has been slow. Due to 2003 radiation on my right side, that incision has a tiny section that's not quite healed, so that's why I've waited to add any more saline. Plus I'm also living through chemo right now, and I'm trying to minimize discomforts!
For my back pain, doing a ton of different Abdominal exercises helps, and most of them are classic "stomach strengthening to support lower back" type exercises. On stomach, lift torso and legs, on back, do crunches or roll-ups. Physical therapists have usually given me exercise plans that have solved every muscle thing I've ever had, including my back problems, so that's where I'd go for an assessment and guidance. They're experts. It could be that a particular angle or position that you're getting into while doing the stretches is misaligning something else? That's stuff that PT's can help with. My own bad back pain has usually been helped in the short run by a heating pad, NSAIDS (Ibuprofen) and occasionally "Flexeril," (Cyclobenzaprine) because it stops spasms. In the long run, ab exercises have solved my back complaints.
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I haven’t been wearing a bra since about 4th week after the surgery. It feels like I have a built-in bra anyway. This experience is completely new to me, since I was 34DDD before the BMX. The last time I wasn’t wearing a bra was probably when I was a first grader. This is the only aspect of my new life I love. No more underwires, no more minimizers, hello halter tops and spaghetti straps! If I live long enough to attend a cool party, I am buying a strapless dress! I was never able to wear these things with my real boobs. Hey, I need all the positive emotions I can get, right? Yes, TE’s are a pain in the neck, and it looks like I am stuck with them until the next year, but this is a small price to pay for a piece of mind. Going to try to sleep in my own bed today. My recliner is great, but come on, it’s been more than 2 months since my surgery. I got a huge wedge pillow to prop me up, and I miss sleeping next to my husband. I’ve been married since I was 19 and didn’t even remember what it feels like sleeping alone before this nightmare.0
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I liken my tissue expanders to two tortoise shells on my chest! That and constantly having that feeling of having had a bra on all day and you can't wait to take it off to let the girls loose but oh wait you can't, dammit! I don't even bother with anything other than a camisole on under my tops. These suckers don't move anyway. I head in tomorrow for another fill. If I can handle 100cc it will bring me to 650cc. Still looking to get to 800. The other day my boyfriend saw me in my camisole (the first time I've even let him see me like that) and he gasped when he saw me. I asked what was wrong. He smiled and told me I had boobs! God, did it make my day.
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I rarely wear a bra, but almost always have a tank top of some kind, with varying degrees of support on. I wear them at night, unless I am feeling particular constricted. Then I'll go without at night too.
I am feeling like my insurance companies/drs have kinda dropped the ball on me. Since my oncologist told me that I will not be needing chemo, but will need hormone therapy, I've heard nothing. No appt set up to get me started on hormones, no physical therapy appt set up, no check ins, nothing.
I say my ps yesterday for a fill and he told me I have lymphedema in my chest. Typically, it's in the arm, but mine is developing in my chest. So, he is going to talk with my surgeon about getting my physical therapy started.
I felt I had been doing too much physical activity at work, and one day, actually felt like my expanders, or my muscle shifted, when I attempted to lift an 80 lb dog in the wash tub. I have been having a great deal of pain and am still taking muscle relaxers and oxycodone daily. Sometimes the pain is so bad, it takes my breath away. Well, at my appt with my ps yesterday, he said, my muscle, and/or expanders have shifted and they are riding unusually high. He will be able to fix that at my next surgery. But, it's the oddest feeling. I feel them up into my upper shoulder/collar bone area now. Very constricting in terms of movement and of course painful. I had been able to sleep on my side fairly comfortably. No longer. I can't sleep on my surgery side at all. Sleeping on the other side is uncomfortable too. So, I am scaling back to t-rex arms and doing little, to nothing with my upper body again. Ug!
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Thank you ladies for all the advice. So glad to hear what I'm experiencing is not all that out of the ordinary for this stage. (Hikinglady, I feel like I could've written your post myself). To those of you have chemo and radiation still, I'm in awe. Stay strong.
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Another 100cc today which brings me to 650cc. I go back in three weeks - doc is on vacation - and I might bite the bullet and get the last 150cc all at once. Boy are these things tight today! My left arm is killing. I think a nerve is being pressed on. Anyone else have this? It's only 1:00 and I'm downing a Vicodin with white wine.
And for those of you going through other treatments, hang in there! I am blessed to only have this to deal with. Certainly keeps things in perspective for me. You are all warriors.
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Thinking of you all today and impressed with your stamina!
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Hello ladies! I am doing ok with the Tamoxifen. I was having a moment when I posted, but I am feeling much better about it. I took it at night, prepared to get up and take nausea meds if necessary, but I didn't wake up sick. I won't go to the Tamoxifen forum. I have found these communities to be most helpful to prepare me, as well as encourage me through this, but I don't want to read about negative experiences with it. I think that would only add to my anxieties about taking it. I have been walking three miles each morning and trying to watch what I eat, so I pray that weight gain won't be a side effect that my body decides to take on.
I'm blown away at so many who aren't wearing bras. My PS insists I wear support 24/7. I have been able to lose the dinosaur arms and besides having my arms above my head, I am getting a better range of motion. I do the wall walking exercise when I remember, and I'm driving a lot now, but still find it very difficult to twist my torso comfortably to look over my shoulders. Does anyone else have trouble with that?
I've enjoyed having the week off from fills. I'm up to 460ccs and I'm getting more comfortable with my size, although I hope to have at least one more fill. My fear is that I'll get that "one last fill" that will keep me in pain until my exchange. I don't want to be miserable until then. We are going to the beach at the end of the month, and I don't want to ruin everyone's vacation by being in pain or more dependent on them than I already am. My oncologist told me that I should never carry a heavy shoulder bag or extremely heavy objects with my left arm, which was the only one with lymph nodes removed. I haven't had any swelling at all, (praise the Lord) so I wonder if it is because I haven't been lifting much. I have always been a pack horse. I can lift as much as my husband, and I'm one of those "carry all the groceries inside in one trip" kinda girls. It's weird how our doctors are all different. I can't imagine weight training or even lifting my toddler right now, much less an 80lb dog! I hurt when I carry a gallon of milk too long. I'm impressed at how some of you can do these things! Kudos to you and your superwoman abilities!
I hope your days are getting better. I am getting used to my new normal, although there are little things that still drive me nuts. Like being afraid to hug people, because I know they are feeling these coconuts digging into their chest. I am a hugger, so I miss being able to do it without pain or fear of hurting someone. Also, I've found myself trying to adjust my seat in the car, and pressing my expanders so hard into the steering wheel before I realize that I'm doing it. I can't feel it, so I'm afraid I'll pop one of these jewels doing something stupid like that. I also still can't sleep in bed. I was able to nap in bed once, but it was before the last fill. Getting in and out of bed is quite painful, so I wimp out and just go back to the recliner. Anyway, I'm not complaining about the little things. I'm very thankful that I'm not dealing with other treatments or horrible pain. I hope those of you who are find relief very soon. Just feels good to express how I'm feeling to someone who can actually relate. Have a blessed weekend!
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ljm33- I had bad back pain for a week or two after surgery. I really wanted to go get a deep tissue massage, but of course, couldn't lie facedown, so no luck. I used a "shepherd's crook" back massage tool that we already owned and went to town digging into the spot that was really bad. Somehow it worked and pain went away. It looks like this and you can find them on Amazon.
faithsmama: it sounds like your tissue expander may have "window-shaded", or flipped up. A friend of mine had it happen and said it was terrible. I am so sorry the pain and discomfort have continued!
Question on fills: I had my first fill about 2-3 weeks ago and get another one on Monday. My fills have saline. Do the fills "settle" into the tissue as time goes on? My right foob has kind of caved in and my husband is convinced the saline is leaking. I just think the expanders have sunk down into the tissue. Either way, I hope it doesn't throw off the schedule for exchange surgery. I'm hoping to get it down Labor Day week when all of our students are on field trips so I don't miss class time.
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readyabout: how much saline do you have in currently? And are the TEs under the muscle or over them? It took a few fills for me to see a change. Plus when the TEs aren't full there can be some weird wrinkling and funny looking spots at the top of the chest.
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ready- I agree with how much saline? My first saline fill was only 125cc and there was a huge difference in shape and projection when I went up to 175cc. But I suppose it is possible for them to leak too?
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For those that are getting relief from the muscle relaxers, what are you taking, how much and when? My BS prescribed 2mg of Valium. I am to take 1 tablet at bedtime and 1 tablet in the morning. I am always hesitant to try new meds, so I started out with half a tablet and I felt I had a tiny bit of relief. I tried a full tablet the next dose and didn't notice any difference, besides some loopiness and actually not as noticable relief. I went back to the half today and still just the slight relief. I feel like a wimp, but am so tired of this.
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I am 6 weeks past BMX + TE's and I have slow healing on my right side because of 2003 radiation on my right breast. So, my right side still has quite a bit of swelling, adding to the TE discomfort against the pecs. I take 5 mg Cyclobenzaprine (+Flexeril) when my pecs feel super tight. At night, I often take 10 mg and that helps me sleep. This works for me. Sometimes, I take one of them every 3-6 hours, and other days just once when it starts bothering me. Probably related to how much activity I do...
This medicine also dries out mucous membranes and dehydrates, so you have to drink a lot of extra water. It's a muscle relaxant, often prescribed for back spasms, etc. 10 mg puts me to sleep, and 5 mg doses work fine for me in the daytime. It doesn't have any other side effects or affect my mood in any way, simply un-spasms the tight muscles.
My surgical oncologist suggested this instead of Valium when we talked it over. She is 37 years old, and had a BMX and TE's and ACT chemo for her b.c. diagnosed when she was 32 years old, then implants eventually swapped, so she has LIVED THROUGH all this stuff. She could not be more compassionate, and she thinks the tight pecs are terrible, she remembers that well, and so she's suggested that I do this. She calls the whole TE experience "wearing a Princess Leia (metal) bra."
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HikingLady - thank you for all of the info. It is so odd, the Princess Leia metal bra is exactly how I am feeling, yet I didn't have any reconstruction.
I certainly wouldn't wish this on anyone, but having an oncologist that has lived it sounds invaluable! Did the metal bra feeling eventually go away for her?
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SPDGirl Oh yes, it is amazingly wonderful to have her as my surgeon. It's a weird, awful thing that she got breast cancer so young, and odd and ironic that she's a breast surgeon. She was finishing her surgical specialization at about age 32 when she went through her cancer treatment, and that's about 5 years ago. She reports that once the "swap" to implants happened, they were very comfortable compared to the T.E's, and the tightness went away. The tissue expanders press against the pecs and are uncomfortable, and that makes the pecs tight.
Since you've had no reconstruction, maybe your tightness is due to healing and scar tissue. If I were in your shoes, I would want the surgeon to advise, to check out my range of motion and healing, and hopefully then refer me to a Physical Therapist who specializes in breast cancer recovery. My friend who does exactly that (also lymphedema treatment), says that it's a very specific training and knowledge set, and not every PT specializes in this. A PT who does can guide you on getting back your range of motion and comfort and strength. "Working" on scar tissue can be really effective for the first year (after healing is completed), and after that, it's not as easy to smooth out and "remodel" scar tissue. So, there's a timeliness to solving tightness and scar tissue that constricts. This is often something that physicians and surgeons don't necessarily help with, so be sure to advocate for yourself about your discomfort. Warm wishes for good progress.
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just want to second the request for treatments that result in weight loss and clear skin
....and cellulite expulsion...wrinkle freeing....
I cod go on, but don't want to sound greedy.
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Hikinglady - it was so disappointing. I saw my breast surgeon this past week and although I have been super pleased with her work, the recovery issues have puzzled her. My range of motion is growing quickly, so she did not feel that I warranted PT. I asked about the specialized skill set for at least some scar tissue massage or something and she had nothing to offer ☹
A friend has recommended a massage therapist who "unofficially" has done some work in this area and I am seeing her tonight, but it is frustrating to feel so aimless at a time when I already don't feel like myself.
Thank you again for all you have shared. I hope that you have a lovely Monday!
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Off topic, but I just have to mention this: I had to get a large needle injection in my hamstring today for a running injury. It involved drawing blood, spinning it down to get the platelets, then injecting those back into the hamstring. Anyway, I had read about it on different forums and many, many runners said the injection pain was unimaginable and they would never do it again. The doctor and nurses had a tough time finding a vein on me that was big and wouldn't roll and they stuck me at least 15 times in my right arm, wrist, hand, etc., finally getting enough blood from the veins on my feet. They kept apologizing and I was like, "This is NOTHING compared to mastectomy surgery." Then when the doctor did the big injection, I didn't realize it was over, because again, NOTHING will ever compare to mastectomy surgery. We have walked through fire and come out the other end and I think many, if not all of us, will be tougher than ever in the face of adversity. I am grateful for all of you who have shared the ups and downs of this difficult journey - y'all are a tribe of strong women!
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ReadyAbout, I agree with you! Starting with the diagnostic mammogram/ultrasound, biopsy, mri, lumpectomy with nuclear dye injections in the nipple, the SNB and then having our breasts amputated...we have crossed a new threshold of pain endurance.
I don’t believe that people who have not been close to breast cancer realize the painful procedures that are involved with diagnosis and treatment.
You are correct! NOTHING will come close to having a BMX.
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Readyabout: you nailed it on the pain tolerance. We've been through the ringer.
On the emotional aspect of this all - do any of you find yourself crying out of nowhere? I mean, sobbing terribly and it's been triggered by nothing? I have these moments and I don't know if it's normal or not. And I'm not a crier. I'm a pretty stoic, hard ass, boss lady who runs a school of 600 kids and has a staff of 60. But I've had several moments at home where I lose it and weep. Is it just the emotional roller coaster of it all? Is it hormonal?
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sn75, I have found myself crying a lot a few times too. I'm sure that you've been through a lot, and even if you're usually stoic, there must be a part of you that needs to release your emotions. I don't know whether it might be hormonal. So long as you're not feeling too depressed, I don't think it's something to worry about.
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Guys, believe me, back surgery is so much worse then mastectomy, there is no comparison. I survived both, and comparing my experiences can tell you that as a fact. After my back surgery I was on opioids for six weeks, couldn’t sit comfortably for 8, and forgot about sleeping altogether because every turn was painful. The pain from a damaged nerve cannot be controlled by any painkiller. It was consistent and debilitating. Every movement was a nightmare. After double mastectomy I stopped taking nartcotics at the end of the first week and was walking in the park the day after the surgery. However, there is no question that emotional component is much worse for BMX, and that makes this experience much harder then the back surgery. Fear, realization that this is not the end, depression and now chemo and rads in the imminent future make this particular battle the worst in my life. If I was given a choice, I would rather have another back surgery.0
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InnaB2018, thank you for explaining so clearly your experiences and how back surgery compares to mastectomy. I'm sorry you're going through such a difficult battle and I pray that things get better for you.
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sn75- i am over 2 months out. I agree on the emotional side of things. I am the rock in my family, it has been hard to keep that up. I have been lucky and have had a pretty smooth recovery, but emotionally I feel numb. My joys are not as high. I feel like I am just trudging through time. It is hard because I was a very up beat positive person. I hope I can find joy again
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ReadyAbout - I am so sorry you are having to go through 1 more thing!!! But yes, perspective on pain and procedures totally changes after this.
SN75 - I too am not a crier, but have had several days like you have mentioned and many more times that I have wanted to just sob, but can't find the tears anywhere. I am tired of myself!
Skiboots42 - praying that joy is ready to sneak back in at anytime. You have described perfectly what this haze feels like.
Funny little aside. When I was in the midst of my long, unexpected diagnosis day at the beginning of this process, the dr was getting ready to do 1 of the biopsies and was trying so hard to be quick and encouraging. Right as he was starting, he said "this will be quick and so much easier than childbirth. If you can do that, you can do this" I truthfully responded that my children are adopted and it totally stymied him. He looked lost and it was kind of cute (he did an excellent job by the way and the biopsy was nothing compared to everything else). I decided to throw him a bone and told him I have had kidney stones and he said "oh good! This is much easier than that!" 😄
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Well, I probably shouldn't have been so braggy about getting through all those needle sticks because I woke up with an infection in one breast (tissue is red, swollen, and hot to the touch) and now have a fever. I think it is most likely from yesterday's ordeal. PS is starting me on two antibiotics and hopefully that fixes things quickly because he said the alternative is a few days in the hospital on IV antibiotics, and I wouldn't want to miss my colonoscopy on Friday, LOL!
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oh my goodness, ready about, a colonoscopy to look forward to! I hope the infection clears quickly!
Bella, I love this sharing! We have all been through the mill!
I think you just have to keep going in this situation, one foot in front of the other. It took six separate biopsy attempts for me since early April, then the surgery, waiting for pathology and oncologist. You don't have time to really process all the emotions.
So like skiboots I think I am numb or frozen. I too feel like my life has been so on hold, that I am almost afraid to trust again that I can return to the land of the living. Wanting my life and joy back too.
Inna, I think the problem is normally surgery fixes a problem. In our cases it changes our lives and is just the beginning. Other treatments ahead for many. My husband had foot surgery and was out of commission for a month but then healed and done. I tried explaining that to him.
Sn75, I too haven't cried a lot which seems strange but then got upset when the drain was removed and when I bought a bathing suit, so much to deal with. So good if the emotion is surfacing.
Spd girl can you self refer for Physio? I think it helps.
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