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September 2020 Surgery Group

13

Comments

  • marie914
    marie914 Member Posts: 152

    Good Afternoon!

    Still progressing well. Some weird pains though in my left breast. Not sure if it is just healing, scar tissue, sutures from mastectomy or sutures from expander. When I bend a certain way I have a sharp pain - almost like an 'electric shock'. Weird. Besides that I am fine. Learning how to sleep on my back pretty well.

    Mangosan - that is great that you don't need any further treatment. I hope to avoid it too. I have clear lymph nodes and clear margins but it was slightly bigger than they thought 2.3 cm so I'm stage 2 barely. My BS said I have to wait for mammaprint and then the MO will see if I need chemo or not. I really don't want to take any medicine (hormones) either. I bet they will want me to.

    Kemiller - yea on your last drain! I didn't realize how much it bothered me until I got them both out. Really is nice. I am dreading my MO visit on Thursday too since I don't want more treatment. I asked about your direct to implant. I had three PS say that I would have them under the muscle that they didn't feel I was a candidate for over the muscle. Not sure because I am obese and I need large implants - I have a 600 cc expander in me since they said something about my implant being too heavy for over the muscle and more changes of failure. Who knows but I have it under the muscle now. That is great you won't need fills and an exchange operation later. I am estimating sometime the first quarter of next year but maybe I am too optimistic. After they fill to the right size for me I have to wait 2 months for exchange operation. That is great that you got your implants right away and the lift too. I hope to have a lift during my exchange operation. She said she might do the exchange and then wait a few months and see how it settles to see if I need fat grafting on implant left side and then a lift on the right side.

  • Mangosan99
    Mangosan99 Member Posts: 38

    Happy Sunday!

    Great to hear from Kim and marie today. It is so reassuring to know we are going through almost the same things mentally and physically. Wishing you both the best this week as you get answers on next steps.

    marie, I have what sounds like the same pain in my left breast--I've heard them called "zingers" and been told they subside. What is weird to me is that my right feels "normal" but the left "zings" when I make certain moves which limits my range of motion. Trying to do exercises but they don't seem to have any relation to that feeling.

    Appetite is still off/on but sleep strategy working a little better. I'm just not a fan of nights right now and I was such a great sleeper before.

    Looking forward to becoming drain free this week (optimistic!) and getting more clarity on the future of my nipple--it is currently blistering but I'm hopeful.

    Thinking about Colholly today.

  • Eucalyptia
    Eucalyptia Member Posts: 17

    Hey everyone! New to the group. My surgery was 9/22.

    I am brca2+, but found IDC on my right (and several other masses in my right) and then DCIS in my left. so the decision was made for me pretty quickly. (i had originally wanted lumpectomy with radiation, but after they kept finding masses, that was off the table).

    I turned 40 on 8/25, biopsy 8/26, diagnosis 8/27, biopsy on left 9/9 and additional diagnosis 9/10. Bilateral MX on 9/22. Waiting on pathology now. Sentinel nodes were taken at the time of surgery and I had tissue expanders placed. I've been mostly fine except for a few issues. Originally was supposed to have nipple sparing, but the MRI showed the cancer running straight through to both nipples. Had a raging reaction to the tegaderm on one side and had to remove all bandages yesterday (giant gross blood blisters on my skin) and one of the drainage tubes is KILLING me (more than the amputation). Valium has been my best friend and I've been starting to take the percocet again for the tube pain. Hopefully the tubes come out on Wednesday. Incisions look good/ I have decent range of motion in my arms. Hardest part has not being able to hold and snuggle my 3.5yr old son. I just want all of this to be OVER. Happy to have such a large community to help guide. XO thank you for reading.

  • Mangosan99
    Mangosan99 Member Posts: 38

    Eucalyptia, welcome and I am glad you found us! It sounds like you are working through some really unique, and painful, challenges. Hang in there--it will get better. I think it is the smaller unexpected complications that have thrown me more for a loop than the cancer itself. Maybe it is because it all piles on. Hoping you get the drains out tomorrow so you can get past that. Hugs to you and your little boy.



  • Eucalyptia
    Eucalyptia Member Posts: 17

    thank you. When do the drs say it’s ok to remove the drains? Also, it seems like my hair is falling out. Is this normal? Maybe the trauma of surgery/ anesthesia? I woke up in a lot of pain, Valium seems to be the answer right now. I see all these women who are up and walking miles days after surgery. I’m almost a week out and I don’t think I can do more than a few blocks let alone “miles”. These drains are the worst.

  • Kemiller
    Kemiller Member Posts: 12

    welcome Eucalyptia, drains are the worst! Hang in there. My last drain was removed yesterday, and I finally got to shower!! My youngest is 17, so she is in no mood to snuggle! Hope you get to get some snuggles in soon, My plastic surgeon managed my drain removal based on fluid output. I was only up to moving around my house for the first week. I am just now, 2 weeks after surgery having the desire and motivation to walk to the end of the block.


    Any one experiencing discomfort in your arms after a mastectomy? I feel pins and needles sensations, muscle stiffness, and general discomfort. I have reached out to my breast surgeon, but I have seem some articles that suggest limited arm exercises to help prevent this.

    I am getting a radiologist added to my team of doctors, my oncologist want him to weigh in on how radiation may improve my outcome. SO I will meet him at the end of October. Then I will take a 12 month cycle of Ibrance and Letrozole. This seems like a path I can manage for post surgery treatment. Yesterday was the first time I left my oncologist with out any tears! And to see the relief in my husband was such a blessing. I felt like finding cancer in my lymp nodes was death sentence, I was paralyzed with fear. So many time in my cancer journey the fear of the unknow has stopped me in my tracks and left me feeling powerless to continue on. While I am so postive about my outlook now I do know that the drugs will take a toll on me. Pre surgery tamoxifen took some adjusting, and the fatigue was challenging to manage and over come. But I will end up cancer free.

  • Mangosan99
    Mangosan99 Member Posts: 38

    Eucalyptia, I think the docs vary on when to pull the drains. Most say after output is less than about 20ccs/drain for 2 days straight but I also think they don't like to pull them all at once so it depends on the frequency of your follow-up visits. Re: hair loss...I noticed this too but it has been happening all summer which I am not sure if it was the stress of diagnosis, summer in general, or the fact I am also perimenopausal. But it is certainly feasible to be happening due to stress of surgery. At your age, it should stop and return to normal. Re: activity...I think I stepped outside for the first time a week after surgery and could barely make it to the end of the block and back. Today is post op day 13 and I walk around the block 2x/day so no records being set here!

    Kemiller, I'm relieved to hear you have such a positive outlook with your next treatment path. Recently I felt like every time I get close to the finish line on this horrific journey that they move the darn finish line. Finding the strength to endure is half the battle! Re: arm strength, I struggle a little more with range of motion than arm pain/discomfort. At my first f/u the nurse 'cleared' me to do shoulder rolls and walking my arm/hand up the wall (Google it and you should see examples). I do these, and a few other stretches, 2x/day and they have helped get more mobility. I've also purposefully have been doing small tasks, like putting the silverware away, to keep these fine motor movements up.

    My follow-up with PS had mixed outcome yesterday. Her office was crazy busy so not as much undivided attention as I needed but got 2/4 drains out and a good report on my nipple--it looks like it will bounce back. However, no word on whether I can keep it based on proximity to my cancer--waiting on breast surgeon recommendation next week. So 2 steps forward and 1 step back. Sigh.

  • marie914
    marie914 Member Posts: 152

    Good Morning!

    I have had more pain the last few days from under my arm (feels swollen I guess is the feeling) and around my chest from under arm to halfway it feels so hard and tight. I had left mastectomy and expander so I think it is that and is normal. However I am supposed to have my first fill today and kind of worried since it hurts so much now. I hope the plastic surgeon can answer my questions about it.

    Mangosan I'm happy you got 2 drains out and a good report on your nipple. Sorry you didn't get more attention at the office. I am hoping that is not the case today with me but it could be since they probably think it is an easy fill and I have more questions. Hoping you can keep your nipple. I didn't keep my nipple. It does seem a step back for me too with the pain.

    Kim I am glad you are relieved and have a better outlook. I believe in being positive. I'm afraid of the medicine they will want to put me on. I see oncologist for the first time tomorrow. I also read her reviews and some say her NPs are not nice and she doesn't answer your questions very well. I will wait and make my own opinion. I do have pain in my underarm (lymph nodes most likely) and just feels so hard and tight across my chest. After a hot shower and ibuprofen it feels somewhat better. It might be because I am typing for work again. Today I am trying to support that arm on the desk when I type.

    Eucalyptia My breast surgeon left it to the plastic surgeon about the drains since she was going to be working with me and the expander. She said after it didn't put out 30 cc in three days; I could get it removed. I had my first one out 4 days and the second one 9 days but that was early the surgeon said. I only had a left mastectomy and expander put in so only 2 drains in all. The first week I didn't walk hardly at all. I was still on pain meds and was loopy. I did get up and walked around the house even up my stairs (slowly). The second week I have taken some walks outside almost every day. It is hot here so not too many since I would get too sweaty and my surgeon said to avoid that. I haven't noticed my hair thinning. My pain has gotten a little worse and will ask surgeon about it today. Hoping things improve for you. I think everyone is different how we heal and how fast.

    Just be careful on the opiod pain meds - make sure you drink prune juice (warm with butter is the best) and take colace and miralax - whatever the doctor gave you since I had a really bad case of constipation. I am usually fine so I didn't think I needed help but I found out not walking as much as I used to (I used to walk 3 miles a day) and taking opiods is a bad combination.

    I better get back to work especially since I am off for a doctor's appointment this afternoon. I hope I get a fill but worried about the pain. I will stop in and let you know what happens.




  • marie914
    marie914 Member Posts: 152

    So back from the plastic surgeon's. She said everything looks good and the pain under my arm is probably the lymph nodes. If it doesn't improve in a few days I can call the breast surgeon.

    She did put 100 ccs in for my first fill. I was a little worried but it seems to feel better with more saline in the expander. Not so tight. We will see.

  • Mangosan99
    Mangosan99 Member Posts: 38

    marie, sorry the lymph node spot is giving you trouble now. I bet you are right about using your arms to type. Our bodies are probably so confused! I wonder if it might help to cool it with an ice pack when you are resting? I've started using one on my back when I wake up b/c I'm so achy from sleeping flat all night.

    I'm intrigued by your fill making the implants feel better. As my PS zoomed through my visit this week she said I have about 200 cc's of air in mine that she will remove and replace with saline at the next visit. When you really think about it, this is the most bizarre process! Thanks for leading the way for this group!

    I'm at day 14 post-op and yesterday felt significantly better than the day before. I think getting a drain out on each side made a difference. Baby steps! Today I resume "work" which for me is teaching on online class part time. So, lots of computer work but no dressing, commuting, or socializing...lol! I'm ready. ;)

    I'd love to hear how everyone is doing. The good, the bad and the ugly ;)

  • marie914
    marie914 Member Posts: 152

    Good Morning!

    Not sure what to expect from fills. I was surprised the PS wanted to give me 100 ccs but she said you look great. So we went for it. I couldn't even feel it going in and it isn't any sorer than before. I just feel tight sometimes and like I have a tight bra on - nothing that I can't stand. The zingers are still bothering me when I bend a certain way. I will be glad when they are over. My underarm pain seems to be getting better too.

    Mangosan - 200 ccs of air replaced by saline That sounds good! I had about 40 ccs of saline in already and she added 100 ccs. Every day I feel better. Some days I went a bit backwards but 17 days out and I'm feeling good. Hope your going back to work is good. I have done pretty good this week. I am more tired than usual but that is even getting better. I think I have trouble waking up in the morning due to the muscle relaxers. I take one before bed. My underarm hurts more than it did but I think it is typing. I am typing with it supported now. I am a healthcare compensation consultant so I talk to healthcare providers and insurers all over the US. I answer questions and do studies for them via email and phone and webcasts. I'm trying to keep my arm supported and not typing as much but that is hard to do. My arm has better mobility now too.

  • Kemiller
    Kemiller Member Posts: 12

    hi ladies, 2 weeks post surgery and each day is a little better. My plastic surgeon wrote a prescription for compression bras. These are the best. For me there is a lot of comfort from this. Getting tired of sitting, so often i rush getting back to my normal activities. Trying to rest and recover for the next 4 weeks. Will not return to work till November 2. The 6 months of treatment pre surgery was exhausting and I struggled to keep up with work. And now i want to get back to life. I am looking at a minimum of 12 months in post surgery targeted therapy longer if i get radiation. Sometimes cancer recovery feels like my full time job, with no vacation or time off.

  • Vainandafraid
    Vainandafraid Member Posts: 1

    Hello! It has been such a comfort to read all of your surgery experiences on this thread. I just had a mastectomy on my right side followed by immediate reconstruction on Monday the 28th.

    Before my surgery, I had saline implants behind the muscle. My GS said when she removed the implant the tumor was much more obvious as it had been squished by the implant. She believes she removed it all—but it was all the way to the skin and the muscle. She did not believe it had invaded either tissue though. The sentinel node was also biopsied. Although I had the mastectomy—she is preparing me for the possibility that I'll need radiation. The determining factor will be the oncotype of the tumor. So—as this cancer journey continues—the waiting is the worst part. I pray the oncotype is low and that endocrine therapy will be sufficient. I'm pretty concerned about having to take tamoxifen, but I can only deal with trying to heal from surgery right now.

    My PS had prepared me when we first met, that while her goal was full reconstruction, there could be a variety of options once she was in the OR. Blood flow to the tissues would be the determining factor in whether she'd place an expander, an implant, or only a drain if the tissues were too compromised. She would use the SPY to look for blood flow to the tissues and nipple.

    As it turned out, she thought things looked pretty good. She was able to use alloderm and a smaller silicone implant in front of the muscle. My right breast will probably not match my non cancer side with its saline implant once it's healed. To assure maximum blood supply to the tissues, she placed a vacuum device on top to draw blood to the surface. It's like having a big hickie. The vacuum makes a lot of noise, and I have to smother it with a pillow to get to sleep. Hopefully after a week it will have drawn enough blood that the tissues and nipple will live—and I can have it removed.

    Overall I'm feeling pretty good. The pain has been manageable with Tylenol and Celebrex. I found myself doing more today (5 days post op)—and am feeling tired now. It's hard not to do things for myself—I'm so ready to feel normal again.

  • Mangosan99
    Mangosan99 Member Posts: 38

    Vainandafraid, thanks for joining us and sharing your surgery experience. Your surgeon's approach is really interesting. The vacuum device sounds about as fun as the drains. Keeping fingers crossed for your margins to be wide!

    marie, your work sounds interesting. I was in military healthcare before retiring--first as a clinician and then as an administrator. It's great you have a job that works so well from home.

    Kim, glad you can take some time off after surgery. People say this will all be a distant memory someday but it's hard to imaging as we trudge through it. I can't imagine what I would have said if someone told me before my diagnosis that I would spend so much time on this disease.

    Day 16 post op and starting to feel a semblance of 'normal.' I'm kind of bummed at my PS's approach to the drains though. Slowly figured out her approach is time based rather than volume. Her nurse told be I'd have them for 3 weeks but I thought that was just worst case scenario; but, no, I will have them three weeks when I go to my next follow-up on Wed. I have 2 that are putting out less than 10 cc's of fluid. Ugh. They are not painful but I'm ready to be done with trying to hide them under my clothes. Oh, and am really ready for a shower! Besides, that, all is good. Alternating motrin and tylenol every 6 hours, muscle relaxer at bedtime, and antibiotics (again, b/c of the drains!).

    I'm doing a little bit of walking and arm stretches and starting to eye my spin bike longingly trying to figure out when that can happen again.

    Hope everyone has a comfortable weekend.

  • LizLynne
    LizLynne Member Posts: 4

    Hi everyone! I'm 6 days post-BMX and am just getting back online, it's reassuring to hear how others have been recovering and at the same time, my thoughts and well wishes to those of you dealing with constipation, post op pain, drain challenges, sleeping, the added anxiety of being in the midst of a global pandemic, and worrying about what might lie ahead based on your diagnosis. It blows my mind how many women are diagnosed with BC and are going through treatment, yet everyone's experience is so incredibly unique!

    My surgery was 9/30 so most of you are a bit ahead of me; I've learned alot from reading your posts. I was able to come home same day after BMX/TE's and took the oxy pain meds for 3 days and then switched over to Tylenol. Had a follow up with my PS on day 3 and they said a stool softener was good but not enough to combat constipation so I took Ducolax gentle (tiny pink pills) and that did the trick. I've been sleeping in an oversized chair kind of propped up a bit with variety of pillows and that's been pretty comfortable for me...I take one Tylenol PM and that's helped me sleep. I've got 2 drains, my PS said I'll have them both for two weeks due to the Alloderm...not sure why but it seems that results in more fluid? They are annoying but not terrible and she said I can shower even with them in, which seems to be different that some of you have shared. Not sure when they will start filling the TE's, I go today so will see. No pathology report yet, I supposed that will come this week at my follow up with the BC surgeon. I've been walking around a bit each day and trying to spend some time outside, just being in the sunshine has helped.

    I hope you all are healing, physically, mentally and emotionally. Love and gentle hugs to all of you!!


  • marie914
    marie914 Member Posts: 152

    Good Morning!

    LizLynne - you are doing great! My PS said she wanted to keep the alloderm as dry as possible (free from extra lymph fluid). She didn't really say why, but alluded to not compromising the alloderm. I saw my PS two days after surgery and she said I could shower with the drains. I showered on the third day but had this little pouch thing that I hung around my neck and put the drains in the pouch. She said just to let the water flow down and do not wash the drains where they go into my body. Sorry that you can't shower - it does make you feel better. Now I like the warm/hot water on my expander. Makes it feel better.

    I'm doing pretty good. Still some zingers when I bend over a certain way. I need one of those grabbers to pick stuff up from the floor. Anyone else having those? I have to go give blood today for my oncologist. I really don't want to take the anti-estrogen stuff. She wants me to take femara. I wanted to be done after my mastectomy and expander.

    Mangosan - three weeks with the drain! maybe it is the alloderm too. I hope my PS was right because I think I had my out pretty soon 4 days and then 9 days. I only had a left mastectomy though. And no shower? I was able to shower with drains. Doctors are all so different.

    I will be back and finish my post - I have to leave for the lab. I can't give blood from my left arm due to mastectomy and lymph nodes. What do people with lymph nodes taken from both sides do?


  • Mangosan99
    Mangosan99 Member Posts: 38

    LizLynne, glad you are back and have your surgery done. It sounds like you are doing really well.

    Marie, thanks for sharing your PS thoughts on the Alloderm--I'm guessing that is what drove my PS to wait but I also find she is ultraconservative on all things--still no shower, still on daily antibiotic, and forever drains! Oh, and she (nor her staff) are very organized--I think of her as more of an artist than a task master--which makes it possible for a methodical, detail-oriented person like me to roll with it. She is incredibly experienced and talented so I have to overlook some of the other quirks. And, yes, I too still have a funky zing in my cancer breast--less frequent and less intense but still there. I move that arm very gingerly. This is one of my concerns with driving (which I'm planning to conquer after the drains come out). Hoping time takes care of it. Interested too in hearing why the oncologist wants you to take Femera--is it for prevention for the other breast?

    Tomorrow I see the BS for my first follow-up and the PS on Wednesday. I'm about ready to just go to Tylenol/Motrin at bedtime or as needed so if I get the drains out Wednesday and cleared to shower by the weekend, I will consider myself out of the woods and feel a lot closer to "normal!" Hallelujah!

  • hog_co-pilot
    hog_co-pilot Member Posts: 36

    Hello, ladies!

    I posted in the Reconstruction site, and Mangosan invited me to join this group since I just had a BXM and TE reconstruction.

    I was diagnosed with breast cancer in April 2020 and had a sentinel node biopsy which showed no spread beyond the breast. During the summer, I completed 4 rounds of TCHP and then had a BXM on September 21. My PS determined that I would be best served with TEs.

    Currently, I’m on my third week out of surgery. Honestly, I’m really frustrated at my recovery progress. I thought by now that I would be farther long in my recovery, especially in terms of pain and medication. While I can get by with some ibuprofen during a big chunk of the day, there’s no way that I could go without pain meds. I hate asking my PS for more pain meds, but I after all that I’ve been through, I don’t want to be in pain.

    I don’t have any shooting pains or zingers. My pain comes from the edges/corners of the TEs feeling like they’re going to push through the skin in between my breasts. I also feel SO MUCH tightness around my chest. It’s like I’m wearing an underwire bra that is DIGGING into my body. There’s also some swelling under my arms where I had a lot of side breast tissue removed.

    I’ve read that fills could help alleviate the pain I feel from the edges/corners of the TEs. For those who have experienced some of the pain I described, what helped you alleviate that pain? I’d love to get to the point where all I need is ibuprofen to get through the day.

  • marie914
    marie914 Member Posts: 152

    Welcome hog_co-pilot!

    I already described what I do over in the other forum on pain w/expanders. I do get some relief when I stretch and take hot showers. That seems to be better than ibuprofen. I am a large woman (obese) and so maybe my TEs edges/corners aren't hurting as much. But I know under my arm; level with the bottom of my breast it is very painful or feels hard. My incision is quite large - way under my arm it goes. So I need to stretch a little bit every hour and that seems to help.

    Mangosan - I missed if you got your drains out? and update from PS.

    At the end of my incision, which is under my arm, there is a stitch that I think I will need to have the PS remove Friday when I go for my fill. They are supposed to dissolve but my husband can see the stitch and I can feel it.

  • LizLynne
    LizLynne Member Posts: 4

    Hi Co-pilot,

    My doc prescribed oxy pain meds which I weaned off after 3 days and moved over to tylenol (TPM at night). No fills yet and expect to have drains in til next Monday (2 weeks). I have noticed sharper pains esp near the drain site and zingers when I lean down or move in certain ways....I just try and breathe deep and they seem to pass pretty quickly. My PS also prescribed Diazepam - 5 mg (muscle relaxant) and suggested that if I'm feeling tightness or spasms. I took one yesterday when I had that feeling of wearing a too tight corset making it hard to breathe and it helped. The script says 1 tab/every 6 hrs if needed. Hope that helps and that your pain is subsiding!

  • Mangosan99
    Mangosan99 Member Posts: 38

    Co-pilot, welcome! So glad you came over to join us but sad you are still struggling with this pain. Your description makes it sound like to me that you have more feeling in your chest/sternum than I do. All of the parts you describe are totally numb on my chest. Wonder if that is part of it. I do also get relief from the muscle relaxer when it feels like just too much on my chest. I also get some relief all over from leaning back on a large icepack. It seems to help me just relax.

    I did have my first fill today which ended up being the most bizarre experience. We first talked about taking the drains out but they proceeded to do the fill first. So, they filled the right and there was just a cold sensation. Then when they went to fill the left, I felt fluid gushing down my side. The PS said it was just saline and I was confused how I was feeling saline that was going into the TE like it was running down my left side. Well, I guess there was a bunch of fluid built up and trapped by the TE so as soon as they expanded it, the fluid escaped. Needless to say, I still have a drain on that side! Ugggghhh! She massaged that side and "pumped' about 40 ccs of fluid out so she wants to see if it is still producing new fluid or if this was old fluid. So, I left encouraged by the fill (it feels and looks better than before) and getting rid of one more drain but discouraged by the remaining drain. Have to refill antibiotic and continue bird baths. No more counting my chickens before they hatch (pun intended ;).

    Oh, and marie, the NP trimmed my stitches today. It felt like she just snipped off the knots on each suture. Maybe that makes it easier to release/dissolve?

  • MsMurphy
    MsMurphy Member Posts: 32

    Hi everyone,

    Today marks 2 weeks since my surgery. I was diagnosed Aug. 27th with a 7mm triple positive, grade 3 tumor in my left breast. I opted to go with a double mastectomy with tissue expanders because 1) I only want to go through this once and 2) my plastic surgeon advised that it would look best cosmetically and I have just enough vanity to care about such things.

    Everything has gone pretty well. Outside of the discomfort from the expanders, I'm feeling good, especially with the drains now out and plan on returning to the office Monday. The only problem is some time during the surgery, the clip marking the tumor was lost. It held up my pathology report as they aren't certain if they have all the tumor. My surgeon wants me to get a mammogram and ultrasound done as she is concerned that something could have been left. The PS is concerned if it is still there, they would have trouble finding it with metal expander port. The surgeon is out all next week so right now I'm on hold with it. I meet the oncologist on the 27th and will go from there with chemo, targeted therapy and hormone therapy.

    Hope you are all doing well and healing from your surgeries.

    Carrie

  • MsMurphy
    MsMurphy Member Posts: 32

    hog-co-pilot, I know the exact feeling you are describing. I've gotten 2 fills since my surgery and this last one leaves me wanting to take off an invisible, too small bra that has underwire digging in my skin. A weird feeling when you are naked. I hate taking drugs so try to tough it out but end up taking something to sleep. One thing that has helped me is a sports bra from Athleta. It was designed for women post mastectomy. When I switched to it from the surgical bra, I felt like I was being hugged. It's pricey but so comfortable, I ordered 2 more.

  • Eucalyptia
    Eucalyptia Member Posts: 17

    Hello!
    I am just over 2 weeks post op DMX with TE (surgery was 9/22). My mobility has improved greatly - doing my daily stretches and generally up and on my feet....but I cannot sleep. I can't find a comfortable spot. I've got a rented recliner topper for my bed/ but it feels like there's no amount of pillows on earth that can help me find the right place to put my body. My husband has been trying to encourage me to take the diazapam before bed, but I don't want to always rely on that. My chest often feels like a combination of sunburned and bruised/ while slightly numb (i know that is a strange description). It is mostly where the drain tubes were on my breast plate- far above my actual breasts. I find that if i hug a pillow tightly, I find some comfort, but of course, as soon as I fall asleep, my grip loosens (also my arms can't handle that all night long). I do feel the tissue expanders (very little fill in right now) and they are exactly as described above- like metal packets with hard edges on the inside. I feel the corner of one under my arm, so I'm encouraged by those of you who have had fills and found relief. Has anyone found comfort from compression on their chest vs breasts?

  • Kemiller
    Kemiller Member Posts: 12

    i found compression helped with the tight full feeling, being wrapped in an ace bandage or a compression bra helped me overcome.

  • marie914
    marie914 Member Posts: 152

    Good Morning! Well I had some unsettling news yesterday. I thought that choosing the left mastectomy was going to be it for me. My Mammaprint (similar to the oncotype but just says low or high risk) came back high risk. My blood work also showed my breast cancer tumor marker to be slightly elevated. CA 27-29 was 44 and the highest normal is 38. I had seen women marker be 100 to 391 so I don't think 44 is extremely high. My oncologist scheduled me for a PET scan next Wednesday 14th just to see if I have spread of the cancer anywhere. Then she wants me to start chemo the week of November 2. 4 cycles of taxotere/cytoxan. each cycle takes 3 weeks. The first week you get the infusion and then you have the next one three weeks later if you are doing okay. So it takes 12 weeks total. She said high risk means 30% chance of recurrence in 10 years and if you have chemo 5% chance in 5 years. She said she doesn't know why they don't use the same amount of years :) And she said AI (in my case femara) is more important than chemo. She said she would work with me on the side effects and we can change to another drug if I am not doing well on the femara. I did like that she said it is my choice if I have chemo and if I take the femara. She will give me her recommendations however. She also gave me information on cold caps for the hair loss during chemo. I will ask her and on the board here if she can change me from taxotere since I heard there are some court cases where women lost their hair permanently on taxotere. I did a little research and it says it could be replaced with taxol which hasn't shown to cause permanent hair loss.

    Sorry it is all about me today! I am getting my second fill today. I need to discuss with my PS about what she wants to do during chemo. I will be almost done with my fills by then. The oncologist said some PS do not want to do fills during chemo. I would probably only need one fill after I start chemo. We will see.

    kemiller - I agree about compression. It does help. I am feeling pretty good around my chest right now. Only left side was done though.

    Eucalyptia I still need to learn how to sleep on my side. I think I am afraid more than anything. I am going to try it with pillows and see how it feels.

    MsMurphy I hope they resolve the issue of the missing clip. I love your dog - is that yours? I have two siblings boxer/lab - white female and black male. They keep me company through this.
  • Mangosan99
    Mangosan99 Member Posts: 38

    marie, that is a gut punch. I am so sorry your finish line has been moved. It sounds like you have a good understanding of your treatment and are handling it well. I'll be keeping my fingers crossed for your PET scan.

    MsMurphy, that is weird your clip was lost--that is a new one. I'm curious how your pathologist is uncertain about having all of the tumor? There should be margins, right?

    Eucalyptia, try not to be too hard on yourself needing some relief for sleep. I tried going without the muscle relaxer and had to go back to one at bedtime. It seemed to both help me relax mentally and physically. Every position felt stiff but when the muscle relaxer took over, I drifted off and kind of melted into my pillows. About a week later, I was able to sleep without it.

    I was kind of uncomfortable at my incisions after my first fill and generally felt like I'd been beat up a little bit. I guess I'm one of the rare ones that is not liking compression. My surgeon left me without any kind of bra or wrapping after my surgery and I've avoided it since. Finally got an inexpensive oversized Fruit of the Loom sports bra to wear with t-shirts and that is comfortable.

    After having my drains out on the right, it gives me hope for feeling better after the last drain is out.

    Hope everyone has a good weekend.

  • marie914
    marie914 Member Posts: 152

    hello!


    I had my second fill Friday 100 ccs. My PS said she can still fill during chemo. Just if I have a bad week we can skip that week. We have a vacation planned 10/24 to 10/31. It will be just before chemo and by then I will feel pretty good. My range of motion is good and I’m doing really well. My only complaint is I’m having trouble bending and picking something up from the floor - it hurts in my left breast.

    Mangosan when you get the last drain out you will feel lots better. I did use muscle relaxers last night since it was the day they filled me. You had double mastectomy. I only had left side so it was easier.

    Hope everyone is having a good weekend

  • LizLynne
    LizLynne Member Posts: 4

    Marie - I'm sorry to hear your journey will take longer than you thought...sometimes breast cancer feels like the gift that just keeps on givingSad. Sending you strength and prayers that your PET scan is clean! Hang in there and please keep us posted.

  • Mangosan99
    Mangosan99 Member Posts: 38

    Well, just checking in with a new development in case I'm not the only one hitting these speed bumps. I've developed an infection in my left TE--started turning red Sunday PM, was started on antibiotics Monday by my PS's partner, saw PS this AM and she wants to do surgery ASAP. So now I'm fasting for a surgery later today. Ugh! Plan is to try to clean out the area and immediately replace the TE but no promises. If the infection is too rampant she will remove the TE and let it heal for 3 months and start all over again. Dang it! LizLynne, you are so right--this gift just keeps giving.