May 2018 Surgery Support Group
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First oncology appointment tomorrow, getting very anxious but relieved at the same time to get the final answers and treatments for this journey. What should I expect? Really hoping my oncotype score comes in low (from what I’ve read my type of bc tends to have a low number....fingers crossed!, I don’t want chemo!
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SPDGirl - my MO appointment is tomorrow. Hoping it goes well.
ReadyAbout - Couldn't move my arm as high today and found out I have cording. Trying to get a PT appointment for next week. Hope your PT is going well and your pain diminishes. Any tips? Did you have ALND or SLND?
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okay okay, I cry uncle!!! I am so tired of the pain!!!!!! I can’t hardly take it anymore. The pressure, the pain, the skin sensitivity, I give!!!!
I am considering going to the marijuana stores! It’s legal here. I have never been a user. But I can not take this pain and pressure anymore!!!
I am gaining weight because all I do is eat and sleep or lay around because the pain keeps me from wanting to move at all. I am working, a bit. But am generally miserable all day every day!
How are you all doing in the pain department
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Week 2.5 post-op exam. Healing well, still some ugly looking scabs / blue stain on cancer side, still a fair amount of swelling and tenderness but it's manageable. I was concerned about that before, but it's showing some new skin growth around the edges which is encouraging.
Interestling, the doc explained that the hard swellings under my former boobs are leftover skin she incorporated inside the flaps to encourage healing and avoid a concave appearance -- I asked to stay flat and I think the end result will be very good. A hint of shape without saggy extra skin.
I have anchor-shaped incisions that run along the inframammary crease and up to the former nipples. Thus the scars are lower down instead of nipple level, and not nearly as wide as the usual style. Sort of an 'ultimate breast reduction' from how she described it pre-op.
I see her again in six months if all goes well. If needed, I can get a revision at that time.
First appt with medical oncologist is June 21. I shouldn't need chemo as nodes were clear. Might need hormone therapy as I'm ER/PR positive, HER2 negative, stage Ia, grade 2. I'm well past (surgical) menopause with ovaries and uterus gone. I still get hot flashes 11 years later (sigh).
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Ugh - one of the few nights that I actually cannot sleep.
FaithsMama - I am so very sorry and I get it! I can't determine if the tightness and uncomfortableness is pain or not, but either way I am very discouraged. Praying for you!
TriplePHtown & SLL: hoping your MO appts go great!
FasterPussycat: that is all interesting info. I feel like I definitely am developing a bit of a concave situation. My appt with MO is June 19th and am also Er/Pr + and HER-, but I am pre-menopausal. Because my tumor size was slightly over the 5mm mark, my info was still sent for Oncotype testing saying a tiny chance chemo recommended. I am dreading the appt and have a list of questions a mile long.
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Sendinh lots of love and good vibes to everyone for their MO appointments! Praying for no chemo for all!
Faithsmama- I have never smoked in my life and previously disliked it very much when I tried in college. However, I live in Boston where it’s legal and my hubby enjoys it from time to time. I ditched the pain pills early and started using a vaporizer (vape?) not sure what it’s called but it’s not like smoking. It’s more clean and you don’t feel/taste the smoke which is what I always hated. He got me some medical grade CBD oil. It’s been so helpful with my anxiety, pain and massively helped me sleep. You should look into it, it’s natural and obviously much better for you long-term than having to stay on painkillers. This is a ringing endorsement considering I was very anti-smoking for so long. My husband now teases me all the time because I used to rag on him so much when he would smoke ;
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I never knew the value of medical marijuana until I had my BMX. Faithsmama if it’s legal go for it! I had the tightness too. It will get better. My PS’s PA said that it’s kind of an incremental thing. It will lessen and at the same time I get a little more used to it.
Take care of your pain level!! You can’t heal when your body has to deal with the pain.
Praying for pain free and cancer free breasts and chests
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Triple: I just finished a PT session for cording and while it’s painful, it feels so much better afterward. I also have a surprising amount of scar tissue on the left side and she dug into that’s as well. I will see PT three times/week for the next 4-6 weeks.
FaithsMama: I am with you re: the pain. I called my PS to ask for meds specific to nerve pain and he wouldn’t prescribe anything. I will see him on Friday and I’m not leaving the office without a plan for this pain. In the meantime, a cousin in CO is sending me some low dose marijuana candy to see if it helps with nerve pain. I figure it can’t hurt to try and I’m so frustrated I can’t see straight.
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Sitting here waiting to go into the oncologists office for the first time!! I’m about as nervous as I was on surgery day!
Hugs for continued healing ladies! I hope all of you with pain issues still find some relief soon!
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I am 5 week's post op and have been doing well with pain for the last week and a half until today. Today I had my expanders filled and I have a familiar pain under my expander on one side, but I can't say it is excruciating. I'm hoping it calms down quickly because I have a day trip planned for tomorrow. It's the first road trip since surgery, so I'm super excited. Expanders suck, but I can't imagine the pain you ladies are feeling with the flap surgeries. Prayers for you all, especially you, FaithsMama. I hope you can find relief soon. Hang in there ladies! We can do this!
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FaithsMama: My PS insisted I wear a bra 24/7 since surgery. I'll admit I have always hated them as well, and the first thing I do when I got home from work was lose the bra! However, I have listened and only taken it off long enough to shower. Once I left it off for about two hours and had horrible pain until I put it back on. I told him about it and he told me to put it back on as soon as I got out of the shower. I haven't struggled with a lot of pressure pain, and I'm convinced that may be why. Also, until today, the pressure of the fills hasn't been uncomfortable. I assume all of that will change as I get closer to the end of my fills. My skin hates me for wearing bras all the time and my skin is very sensitive and flaking off, but I'll just keep slathering on a moisturizer and tough it out for a few more weeks. Maybe try a bra for a few days and see if that helps? I wouldn't have dreamed of sleeping in a bra, but Ive come this far, so I'll keep toughing it out. Guess I will see after the next few fills how my body deals with the pressure. Hope you get relief soon
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Saw the doctor on Monday and he said that up to 3000 of Tylenol daily wasn't a problem and I'm glad he said that because since I started radiation on Friday everything seems to be sore (top to bottom). I think that the radiation is making things shrink up so I'm focused on doing my PT exercises regularly. Thanks for sharing the pic Ready, it is very helpful to see what it looks like. I've noticed that I can't fully stretch my right arm without a really weird sensation in my armpit and it kind of aches most the time, so I'm going check in with my PT and see what she thinks.
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sll101984: How did the onco appt go?
Thank you everyone for your comments and encouragement. What a super group of women you ALL are!!!
My recent bout with pain is a good lesson to me and for all of you who want to “tough it out.” This isn’t the time to be superwoman. Stay ahead of the pain and take your meds!!! I can not fathom how those of you whose drs are stingy with pain meds for fear of opioid addiction, are getting along. There is a time and a place for meds. Now is our time!! That being said, medical marijuana, or CBD oil, here I come! I am taking my first trip to the vape shop tomorrow!
Oh! Also I had 60 cc’s put in my expanders today and think it actually released some of the pressure!! I had some fluid retention which was part of the cause of my pain. The filler sort of moved everything around and settled it nicely into place!
Time for a muscle relaxer. Gonna keep ahead of the pain this time!!
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FaithsMama- my onco appt went really well, my score came back at a 14 and I do not need chemo! Compared to what some women have to deal with, my situation is nothing. I count my lucky stars and my blessings for sure! I will be coming out of this journey with fake boobs and tamoxifen for 10 years (not overly thrilled about pills for 10 years but it is better than the alternative)
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So glad to hear all these good reports!
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More good news SPDGirl: I do not need radiation! Got the report today! Yippee
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Makes my heart happy to hear so many good reports! I got good news last week, but I was reluctant to share it. So many are having such a rough time with chemo and radiation, that I felt guilty to share that I too will be coming out of this with no chemo or radiation, only foobs and a 10 year pill. Now I see just how compassionate the women in these communities are and that you cry, encourage, and celebrate each victory, together. I am thankful for each of you, and I pray blessings upon you in your journey with this ruthless disease! I'm also thankful for how far they have come to be able to offer these treatments and procedures. Hang in there girls! This is just a season, and it will pass. Thanks for listening to my babble and encouraging me along the way!
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Almost three weeks post op and I got my drains out today! So thankful! I have some oozing from the holes - anybody else have to deal with this? It's not much and I have gauze over it. For those of you worried about drain removal mine was fine. I'm still so numb from surgery and nerve loss I felt nothing. I didn't even know he was pulling the tube. Plus he was very quick about it.He also put in another 100cc so I'm half way there with expansion. Tomorrow I head to work for a few hours. I'm a principal and it is promotion for my sixth graders. I told them prior to surgery I'd be back and I won't let missing it happen. I'll be there for a few hours and then home to rest. Any suggestions or experiences on not doing too much too fast or wearing myself out?
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- FaithsMama - that is wonderful news! How are you feeling?
- Blessedinthismess - you stated that wonderfully! Congrats on all the good news.
- Sn75 - Woohoo! So glad your drains are finally out. My holes were covered with guaze for 24 hours and I did need to change the guaze once during that time. Take everything nice and slow tomorrow. It is so interesting to hear of schools still in session. Here in OH, the kids were done towards the end of May.
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sn75....oh I had oozing!!!! They pulled my left drain out and it was like a waterfall coming out of me! I was soaked by the time they got it stopped! Had to change my pants and underwear when I got home!
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So happy to hear all the great news ladies!! I didn't have oozing but my doctor told me to expect it and that it was normal.
Is anyone experiencing tenderness at or below the drain sites still? I'm 3.5 weeks out and I noticed today there is an area on my SNB side that is super tender, though in all honesty i have been poking at it since I noticed that!
Also, since I've been cleared to do my post surgery excercises which include lifting my arms overhead I just assumed I no longer have any restrictions in that department, but I didn't really ask. I'm sticking (reluctantly) with the no lifting thing but other than that I'm business as usual.. didn't anyones surgeon tell them otherwise?
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Michi my drain sights are still very tender as well as the areas right around them. I have to keep telling myself there was just some major traumas to that area! But you are not alone.
As far as restrictions I still have the 10lb weight limit but my plastic surgeon says to take it easy and listen to my body. No push up type moves but I can reach up for things, just stop when it bothers me but that I should move som
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SLL great to know! I hadn’t noticed before but I think some of my numbness is letting up and now andI’m starting to feel a bit more
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Hello Ladies!
I am really enjoying reading everyone’s updates. It seems overall, the May group is doing well!
ReadyAbout: how is the chording? You inspire me with your attitude and resilience.
As4me: I am doing fantastic in terms of outlook and mood! I received great news in not needing radiation. The oncologist just phoned and my oncotype score is 14 which means NO CHEMO!!!!!!!!!!!!! That was a HUGE relief!! He is writing me a prescription for Tamoxifen. Though I have no intention of taking it. It only offers a 20% improvement in chance of recurrence, not worth it to me. He also approved a prescription for Premarin. So I am happy all the way around!!
The WORST part is the pain. I am having so much PAIN!! Still needing muscle relaxers several times a day and oxycodone s couple times a day. The pain is greatly influencing my ability to function normally everyday. Anyone else still having high degree of pain?
I had a fill of 60cc, giving me a total of 300 cc fill thus far. The pressure seems slightly better. But throbbing pain still. Also still LOTS of bruising due to the hematoma.
I started IV therapy today and Anderson Medical Therapies in Seattle. I will be doing hyperbaric chamber therapy with them too. It’s expensive, though I am looking forward to the health benefits.
Thank you ladies for giving me a safe place to vent and share!
I wish you all wellness, healing and peace of mind!!
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I had tenderness all around my drain sites, but I think mine was mostly due to an intolerance to the tape that held the tubes in place. When I had the first drain removed, the nurse pulled the tape off my side and a huge blister popped out. I had a LOT of sensitivity and pain under my foobs where the drains were. I thought the drains caused it, but I am still tender there and I haven't had the drains for about two weeks. I wonder if it is because I wear a bra 24/7. My skin hates me now and has been super sensitive since surgery. Today my niece gave me some samples of Bio oil, so after my shower tomorrow, I'll lube the girls up and pray that my skin heals better. My incisions look great and are healing nicely, but the skin around them is horrible. I have phantom and shooting pains a lot too, but they don't last long enough to take meds. When I drink something cold or get a chill, it feels like my nipples get hard and I don't even have nipples! Does anyone else have lots of skin sensitivities or phantom pains, or am I just a weirdo? About a week after surgery, I was sitting on the porch and it felt like my milk let down! I think someone needs to tell my brain that MY BOOBS ARE GONE! Still having some pain from my fill on Tuesday, but hoping it will keep easing.
I almost forgot, today I drove for the first time! It felt SO good to be able to take myself somewhere, instead of depending on someone else to chauffeur me. My PS has had me so restricted that it was more difficult than I thought it would be. I can't wait to begin PT. I'm babbling again. Sorry. Just feels good to share with ladies who understand how this all feels. Take care and God bless!
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blessedinthismess: I have odd pains and sensations too. I was a 40 DD before surgery and sometimes I get these odd sensations they are still there. I can't really explain it. And when I drink something cold I get a sensation that spreads across my chest that is icy. So you are not a weirdo! I try to explain it to people but they don't get it. Nice to know someone else out there does!
Michi: I'm three weeks out and my PS won't let me lift anything over two pounds orstart exercises. I can brush my hair and wash it but that's it for over the head activity. I think he is pretty conservative so I'm following his instructions.
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hey ladies-
Faithsmama I’m sorry to hear about the pain...I’m still in quite a bit of pain after my last (and final) fill.. but I’ve only been taking Advil as needed. These tissue expanders feel like rocks sitting on my muscles anytime I lay down in bed, or with certain movements. Technically they are hard plastic backs that touch the muscle, so not far off from rocks. If you’re still having that much pain daily talk to your dr and see if they can try a different muscle relaxer or even some nerve pain med, perhaps that will make a difference? It’s still pretty early post surgery, I’m told at the 6 week mark things but get drastically better and the TE’s will feel more comfortable. (I’ll believe that when I see it)
Blessed- I have the same pain and weird sensations. I’m also freezing all the time. I was literally shivering and chilling the first couple weeks post surgery and was freaking out I had some infection. Then I realized I was literally just super cold. I’ve always ran on the cold side but now it’s another level. When I drink anything cold I literally feel it go down my chest. I’m told this is normal since there is no longer the layer of natural breast tissue. I’m hoping when I get my real implants I’ll warm up! It’s summer in Boston and my husband jokes in winter he’s going to stuff my bra with glove warmers like the skiers use!😂
SN-
The PA is the one that told me I could start, only when I asked her at my first fill..I’m thinking they tell people to start based on how they are feeling at her office, versus having a policy for certain number of weeks. It’s interesting yours is so strict, I wonder when he will have you start the exercises.. I’m accustomed to toting around a 4 and 2 year old (plus a hefty French bulldog). I haven’t lifted on the kiddos but I am sure I’ve been lifting over 5 pounds from time to time. I have to remind myself to take it easy!
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Having a crabby morning, but reading through everyone's recent posts sharing good news, challenging next steps, and validation of this bizarre pain has been helpful....
3 weeks out today, no pain meds since 5 days out, yet truthfully have a level of nagging aching & burning that is constant & is bringing me down at this point...no infections & “healing well," but tenderness & soreness in all the areas you ladies have been speaking of -around former drain sites, up & down my SNB arm area. spontaneously shooting pains across my chest, distressing phantom “nipple" sensations when chilled...don't really want narcotics even tho none offered, but allergic to Ibuprofen, so stuck with Tylenol which is not helping. Given it's legal in Boston, I'm going to look into the cannabis products...just feeling worn out from disrupted, lack of good sleep & now secondary back spasms from not being able to truly rest or stretch.
I am lucky that no more tx required & due to no reconstruction I don't have to deal with the pain of extenders & fills, however have been upset that since my one visit when drains removed 6 days out, my BS didn't schedule to see me until December AND I seem to have more loose skin around that may not be part of swelling (requested no skin sparing given my choice for no recon but believe that was not honored). I was finally able to get an appt to see the nurse practitioner on Monday - I plan to look at things w her, ask my questions & hope to get some reassurance. Also want info on being able to start exercises, moisturizing & acupuncture - not clear on that.
Wha Wha Wha, sorry for the rant, just needed to vent in a place where others get it! This experience does feel isolating...mastectomy surgery seems to have a very unique recovery trajectory from other surgeries. As some have said & I need to remember - my body (mind & spirit) have undergone a major trauma & it’s“normal” to be freaking out in multiple ways...will try to be gentle with myself today.
Grateful to you all as always ❤️
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Hi ladies
I too had a good report from the MO. Although my case is going to their tumor boards. My DCIS was right up against my pec wall. They are going to discuss if I would benefit from radiation. I hope the answer is “no”. I am going to do a trial of Tamoxefin, hopefully I can tolerate the side effects. If not it is strict plant based diet for me, which I am starting anyway.
I am about 6 weeks out and have no real pain. My expanders are full 550cc and I am back to work and exercise. It does get better!!! Hang in there. My energy is also starting to come back. Just a little bumb in the road called life!! I have three very important reason to make better lifestyle choices they are Austin (5), Sawyer (3), and my hubs. I was not necessarily unhealthy before, but I can do better. For those that are looking for other ways besides medication to decrease recurrence risk check out the book “Breasts, the owners Manuel”. Have a great weekend everyone
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Little victory today! I put on a regular shirt, no zip up or button up! I found some soft cami tops at Kohl’s (no shelf bra in them) and I was able to step into them and pull them up. I think I will wear these as a “bra” layer for now when I go back to work. I have a few loose fitting shirts from when I was pregnant and they seem to be coming in handy now too!
Side note....for this of us with expanders who has or had them filled with air first? Who went straight to saline? I have air in mine right now and forget they’re there for the most part but I’m afraid as soon as they switch out the air for saline they’re going to be horrible!!
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