May 2018 Surgery Support Group
Comments
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Ljm- I was also exhausted at 5.5 weeks. I am now close to 8 weeks and feel so much better. I would say normal, but I find myself a little short tempered. So much has changed hormonally I feel I should get a little slack... Is it the surgery removing part of me, the removal of the IUD, starting cycles after not having one the last 7 years (back to back pregnancies, breast feeding, then IUD). I forgot how much monthly bleeding stinks (that in itself could make me moody) or is it the starting a medication that mimics menopause. Oh and I completely changed my diet to plant based andno refined sugar. I just want to say I love ice cream in the Summer, say bye bye. Yeah... I think we should all get a little or a lot of slack if we are not quite ourselves for a little bit.
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sn75 I'm about 17 miles east of Temecula in a 24 foot RV (full time dweller).
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I'm relieved to hear that others are still dealing with fatigue - I am surprised to still be this tired. I think part of it is due to waking up a gazillion times during the night and part is recovering from the surgery. I just started a muscle relaxant at night due to a hamstring injury and even that isn't helping me sleep well. I'm usually tapped out by 9:00- I went to an outdoor concert the other night with my husband and by 9:30, all I could think about was lying down and going to sleep in the grass, which to my credit, I didn't. I turn 50 tomorrow and for my birthday, my PCP scheduled a colonoscopy, so I have that to look forward to in a few weeks. I told a friend that one of the hardest things about this stage of the recovery is wondering when I will enjoy things and look forward to things like I used to. I feel like a subdued version of myself. A friend who has gone through this reminded me that all of us in the May group are currently in the intermediate stage of recovery, which is the hardest stage. It will get better even if it feels like that day is distant.
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Hello comrades! I’ve been following all your posts, and relating to many, while feeling empathy for others, but haven’t posted myself in awhile....
5 weeks out today, and I am definitely in that “intermediate” funk phase. Tired from weeks of disrupted sleep, feeling I need to be more productive, exercise more, be better with my nutrition, return to activities that used to bring me pleasure, but struggling to find my way back to myself (or forward to a new version of me perhaps)?
Been frustrated with persistent disconnection from my care team, so exploring other providers, however this involves changing my insurance carrier mid year which has its own challenges & my motivation to deal with anything in general these days is low...I want to have the option of a better connected team if I do decide to “clean up” the mess left behind on my chest (was supposed to be flat but was given skin sparing without having previously discussed or fully explored that with my BS). At times the distress is impeding my recovery, yet don’t want to think about another potential surgery down the road...
I’m self employed & feel I need to start back to work at least part time, but ambivalent; having some familiar structure may be helpful to get me reoriented to my life (having income again will start to be a priority soon), yet struggling with my moodiness & lack of sustained focus.
What a strange trip this has been. Honestly, having this forum to follow is the only place that feels truly solid to me! Even as I read about fills & expanders (which I don’t have) or managing parenting (which I am not), or symptoms I don’t have, I feel connected here. Who knew! We have a diverse range of experiences post operatively, however you remain a community of sisters to me as I continue to stumble through this new (unwanted) terrain. My best thoughts are with you always.
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What’s everyone doing for arm/shoulder excercises (if anything at this point yet!)? My PS hasn’t mentioned anything about certain stretches or needing physical therapy but I definitely don’t have my full range of motion. I’m not expecting to yet, but I would like to start working on some stretches even a couple times a day to stop my range of motion from getting worse. I need to write this question down for my next appointment too! I always get to the dr and draw a blank when they ask any questions??
Happy 4th of July weekend for those celebrating this weekend!! Going into our first heat wave of the summer here in New England!!!
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Marena - I hope you can feel my hug. I am sorry you're feeling down. Communication from the medical side is so critical. Is there one or another of your medical team that you feel most comfortable with? Perhaps you can focus there and see you can meet and talk. I am all too familiar with having difficulties with doctors. I actually switched my gynecologist and primary care provider just after my diagnosis -- just didn't suit me and I figured I'd better take care of it. But it is tough to find a doctor well suited to our particular style. One thing I do is google the doctor's name and look at reviews and comments. I've done pretty well with that. Do find someone ... is there a support group offered through the hospital? Anyway... I feel your distress and hope you find a way out. In the meantime we're all here with you.
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Marena: So sorry you are dealing with the ups and downs of a healthcare team that isn't consistent. You'd think that we would at least get a pass when it comes to post-surgery complications, but I guess not. This may not be a popular opinion, but I decided after I was diagnosed to seek out female healthcare providers. Whether it's a fair assessment or not, I feel like women listen better and are less likely to finish my sentences or chalk me up as an uppity patient. Since then, I've found a female PCP, orthopedist, PT, etc. and I've been so pleased with my experience each time. Also, my mother was a physician recruiter for a large medical clinic and she once told me that when push comes to shove, a PA is often a better listener than an MD, so my PCP is a PA and so is my pain specialist. My only truly bad experience this entire time has been with my PS, which unfortunately, is a big piece of the puzzle. I hope the pieces fall into place for you, and sooner than later. {hugs}
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ReadyAbout - Happy Belated Birthday! Thank you ( and thank you to your friend) on the reminder that this is one of the hardest stages. So difficult to see the light that I hope is at the end of the tunnel. Any improvement on your sleep?
Faster: how are you feeling now?
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Marena - I totally understand everything you are saying. Praying for some encouragement.
SLL - I have been using the video from a link ReadyAbout posted earlier in the group for arm exercises. I will see if can find it....
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Hi Everyone, I’ve been reading and keeping up with my May friends!
Marena, I am feeling a disconnect from my care team as well. Since I was told no chemo from my oncologist, I have heard nothing. Not when the hormone meds start. Not how much, or when or what to take. I haven’t heard from P.T., and I am frustrated as well. I feel your pain! In more ways than one!
ReadyAbout; I’m glad you got muscle relaxers finally! They don’t take the pain away, but for me, they do take the edge off.
As4me: I go from good day to bad day, pain wise. I realized I went to work too soon. I tried lifting an 80lb dog when I was having good day. Let’s just say, the good day ended there and now I am back to barely lifting my toothbrush!! I am having phantom nipple pain! Or just lots of pain in my incision area, which is in the nipple region. Good news is that I am getting more feeling back in my arm!
I am also having hot flashes and oddly, an increased sex drive. Anyone else experiencing this? Is it hormonal shifts?
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Update from my post in late May:
So the soreness from what I thought was overdoing it was actually the start of an infection. I went to the ER with a fever, after 3 days of pain and extreme swelling. ALERT: a medical resident removed the steri strip and the oozing began. It was chunky and smelly. and extremely painful. ER nurse came into the room and asked "Is someone eating an egg salad sandwich or is some draining going on?" I laughed so hard I cried - and laughing was painful!!! Residents are students but there was a lack of compassion from this one - I had to have her stop and demand pain medicine. She said she was wondering how I was handling the pain. The amount of stuff that came up got everywhere - on the bed, the gown, my pants. She kept having to get more supplies.
Ugh. So, I am admitted to the hospital for IV antibiotics and my wound is opened and packed to assist with drainage. My surgeon finally saw me on the 2nd day with results of all the blood tests - it was a single bacteria causing the infection. That bacteria usually lives in the gastrointestinal tract. With some details from the doctor - we figured out it most likely traveled from my gums (I had inflamed gums, something I get from time to time). Since the sentinel nodes were removed, the bacteria traveled down and settled in the surgical site. It was an unusual infection but he was relieved it wasn't something worse. After discharge from the hospital, I had daily appointments with the clinic to have the packing and dressing changed. It was a painful process that lasted 3 weeks (thank goodness for the pain meds). I had to cancel a work trip and extend my leave. To top it off, I had skin damage from all the adhesives and an allergic reaction (hives) to the 2nd course of antibiotics.
I am happy to say that the infection is gone and the hives are calming down. I do feel weaker now, I don't have the stamina. It's going to be a long road ahead. I did have some good news, the margins were clear, my oncotype score was 18. My surgeon things chemo isn't necessary, just radiation and tamoxifen. I see the medical oncologist in mid July with radiation starting in August (when the incision is healed).
For those of you that are struggling, we are stronger for having to deal with the difficulties, be kind to yourself and demand what you need. We must all be our on advocates. Doctor's practice medicine, they don't know everything. This site is a helpful collection of information and experiences to help us wade through this.
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- FaithsMama - glad to hear an update. I feel like I am having hormonal swings as well, but in the opposite direction. I don't have ANY interest in physical contact ☹
- Madkitteh - I don't even know where to begin. What a terrible time you have been through! Am praying that you will keep feeling better and better from here on out!
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Hello, I had my lumpectomy/sentinel node bx late May 2018 after 6 rounds of HPTC. I had a pathologic complete response. That week of waiting due to Memorial Day was brutal. I am going to PT tomorrow to see about lymphedema prevention. I will also ask about what I can do about numbness in upper right arm. I also start radiation therapy for 6 weeks tomorrow. All of this keeps hitting when I am not feeling healthy. Side effects: fatigue, numbness/tingling of fingers and feet, Rt. upper arm and breast numbness and discomfort in right arm. I have 9 more doses of Herceptin. What a year. I'm really glad I did not do major reconstruction.
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Welcome BAZelda. How did PT go today?
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I started PT today. At the time it felt great but boy am I hurting tonight. I was given 6 stretches to do daily. Wish I knew how to take a picture of them and post it. Maybe I'll try. My physical therapist said don't expect to really feel better until 8-9 weeks which scares me because my exchange is at week 9. So right when I'm feeling better, I'll probably get smacked again.
I'm sorry to hear about so many medical issues. Hang in there ladies. Hoping for speedy recoveries. And I can definitely relate to that middle stage funk. So ready to feel better and have energy and actually want to do stuff and I'm just not there yet.
And happy belated birthday Readyabout.
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I don't know if this is allowed and if it's not feel free to take it down but here are my exercises to increase arm movement and help posture which will help with my back pain. I don't want to tell you what to do but this is what I was given at almost 6 weeks out
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Thank you! I’m going to try those exercises!
Got my second saline fill today, I’m up to 175cc and it still feels good no discomfort. Still don’t think I’ll get my expanders filled all the way to 350cc, but I’m going to try and go a little bigger. My ps says it will give her that much more room to work with during my exchange and the implants always are smaller than the expanders too. Anyone have their exchange surgery schedud yet?
I did get some good news today....I can lift my daughter!! I am 6 weeks out from surgery and being able to get her in and out of the crib, car, high chair, and tub will help out daily life so much!!
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Oh SLL that is great news. I can totally relate. While my kids don't really need lifted anymore at 4 & 7, it's been so hard to bathe, clean and just look after them.
My exchange is scheduled for July 25th. I'm a little nervous because it's only two months after my first surgery. It looks like you're going at a much slower pace. But I only got expanded to 330 so she says I'll be ready. And I am incredibly uncomfortable so I'm so ready for these expanders to be out. Everyone says life will get better then. I'm pushing through with my stretches but after only two days I'm feeling evenmore aches and pains - mostly my back. But I feel in the long run it'll help. One day at a time.
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Dmx 5/24, stayed flat. Flap necrosis on cancer side. It dehisced about 10 days ago, surgeon cleaned up the dead tissue 5 days ago. I've obviously got a lot of healing left to do.
I am so glad I decided to go flat. Necrosis + implant would have been a disaster for me.
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Faster: I know it's been a long road, but the side that had necrosis has healed so well! It looks good! My left side looked the same way and that's when I did the hyperbaric treatments to help it heal. It looks like your tissue is well on the way to full healing.
I started Tamoxifen on Saturday. Based on my Oncotype, I have a 20% chance of recurrence somewhere else in the body later; taking Tamoxifen for 5 years will lower the odds to 12%, which still sounds kind of crappy odds to me, but the MO said that 95% of his patients with the same profile take the Tamoxifen. Has anyone else started Tamo yet?
My PS cleared me to resume lifting weights so I'm back in the gym doing slightly lower weights with more reps. I still have some cording, which makes some things difficult, but overall I feel more confident using my arms in all kinds of weights. Do the stretches and arm exercises, friends! They will really help you regain range of motion quickly!
Happy 4th, friends!
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Happy 4th. We are having a BBQ at my home tomorrow. I'm not sure I'm up,to it. But every year people come over and at dark walk,over to the park a half a block away to watch the MGic Kingdom Fireworks show. .there is a lake that reflects the show and is very cool. I'm not sure I am up for for it but lots of times I end up not doing a lot as everyone pitches in.
I have started on my hormone, Anastrozole. Since I am menopausal. I think it is causing me to have more melt downs. But not sure about everything else. Since my pain level by this time at night is up I'm not sure I am having any other side effects. The first few days I thought my joints hurt but that passed in about 2 days.
Faster-- I think your wound area is starting to look pretty good. I know it can take time when things don't go exactly prefect. My daughter had breast reduction surgery a few years ago and she ran into all sorts of issues. It took her 3 months to get to where I am right now at 33 days out from surgery. It sucks when things go wrong.
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Ready- I started tamoxifen two weeks ago yesterday. So far so good! Wel’ll see what a couple of months brings.
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I have also started Tamoxefin. I am about 3 weeks in. I think I am doing ok, just very temperamental. It is hard to say why, lots of changing variables. I hope we all tolerate it ok
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faster - thank you so much for sharing photos. I am soon to have BMX. and very much appreciated photos so I can envisage how my chest may look post surgery. My surgeon says she will do elliptical incisions which may look different to yours but seeing your pics gives me a real sense of what to expect (even if the scar lines may look different).
Again thanks for being brave enough to to share.
Sends you big thanks and hugs. Heal quickly xxx0 -
Helenlouise the Wise pattern / anchor / inverted T incisions aren't as commonly done from what I can tell. The surgeon said that a 'breast-reduction' type incision starting in the underboob area would result in a shorter overall scar because I was a DD.
She reused some of the extra skin inside which left a little bit of a ledge so bras won't ride up. I have a bit of underarm flab but nothing resembling the dog ears many others have had. There's still some swelling that is going away slowly. The healed scars are flat and thin.
I am mildly diabetic and have high blood pressure which both probably contributed to the flap necrosis. The incision type also has a higher complication rate. I'm not faulting the surgeon at all -- the end result will be smooth and flat, which is what I requested.
You'll be amazed just how much people DON'T NOTICE a complete lack of boobs.
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- ljm33 - thanks for sharing the exercises. How are they going? I feel like the "time" we are told that we will better keeps getting longer and longer!
- Sll - that is great news on being able to lift your daughter!
- Faster - thank you for sharing the pictures. You have been through a lot. Praying that smooth sailing is in your forecast 😎
- ReadyAbout - am so impressed with your physical stamina on lifting weights and carrying on! I still haven't decided on Tamoxifen yet. My MO is on vacation and he was supposed to be reviewing my sister's medical records regarding potential clotting complications for me. My Oncotype is 12% recurrance, 7% if I take Tamoxifen
- Kandyhunt- the fireworks sound amazing!
I had 2nd follow up with breast surgeon yesterday. She is super pleased with incision healing. Peeled off the glue! My complaints of chest tightness (pretty much starting at cleavage area, heading outwards and upwards ending under arms. Much worse on node removal side) puzzle her some. She is used to no nonreconstruction ladies only finding this a minor annoyance at this point (7 weeks post BMX), but did say could be 6 months before entirely back to normal. I tend to tolerate pain better than tightness, so have been relatively miserable. She hesitantly prescribed 1 week of low dosage Valium to try for muscle relaxing. Any one else having good results with tightness and/or muscle relaxers?
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SPDGirl: Muscle relaxers have been a lifesaver for me
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ReadyAbout: I started the Tamoxifen yesterday and it made me nauseous. It was a different kind of nauseous, and one that I can't really explain. I was also feeling depressed some, or just numb headed, if that makes sense. I've never had to take medicine on a daily basis, except for an inhaler that treats my asthma, so I wonder if maybe I've just dreaded it so much that I'm making myself sick. I didn't eat enough yesterday all day, so I could maybe contribute the way I felt to that. I don't know why I'm having such a difficult time with taking it. We went to a pool party this evening, and on the way back home, I started feeling nauseous again. I remembered that I had planned to take my Tamoxifen at night to see if it would help with the nausea. It was so late when I got home, and my stomach is still upset, so I can't make myself take it. Why am I making such a big deal out of taking this stupid pill? I'm so thankful I didn't have to do chemo. I can't imagine how I would have handled that.
Has anyone else experienced nausea with it, or am I just a psycho?
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blessed: Like most drugs, Tamoxifen can have a wide range of side effects and nausea can certainly be one of them. There's a forum dedicated to Tamoxifen, but keep in mind that almost everyone on that forum is having side effects, so it's narrow demographic chiming in. The most common side effects I hear about are joint pain and weight gain. (Why can't side effects ever be clear skin and weight loss??) I had bad nausea the first few days on Cymbalta - I almost stopped taking it after the first day because the side effects were so bad. I stuck with it and feel totally fine on it now. It may be that your body needs a few days to adjust to Tamoxifen. Good luck!
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