May 2021 Surgeries
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the cold drinks!!! I have that experience that you can feel the cold drinks in your chest. So strange isn’t it!
My oncologist is running the Mammaprint not sure why he chose that over the oncotype. But anxious over the results of course.
The first shower feels amazing but it also feels strange to move feeely with no bra or drains. I’m adjusting to these new boobs (tissue expanders).
I also started seedinlings this spring. It was a nice happy thing to do while on that biopsy/waiting for surgery phase. I want to plant a lot of flowers on my deck since I won’t be doing any big gardening this summer.
My energy level is returning which is wonderful. I was so tired for months.
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Dulcea - I am doing PT. They sent me in before surgery to measure my arm for lymphedema and gave me a couple of simple exercises for 1 week post surgery. Went in last week and have more exercises to do and helped release some of the cording. I am feeling better and better. I have 2 more appts set up and hoping that will be it! Just ask your doctor to get you going with PT. Because I didn’t have reconstruction, I was likely able to get started earlier?
I also didn’t notice any issues with drinking cold drinks but again maybe it has something to do with reconstruction??
Next week is my last week off work - then back at it. It’s going to be a busy week too: wig shopping, prosthetic shopping, first infusion and maybe a hair cut. Praying it won’t be too bad - lots to get caught up at work and don’t need to feel tired and sick!
Hope you all are having a good weekend and if you have Monday off - an extra long weekend!
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I'm glad I'm not the only one with the cold chest sensation. I wonder if it eventually goes away. After all I read on these wonderful message boards, that is one after effect I missed! I wonder what other surprises I'm in for.
Carlsoda - Good luck next week. It sounds very busy. Sometimes being busy helps I think and makes you feel in control. Are you taking someone with you for the wig shopping?
I will ask for PT. I think I have the beginnings of lymphedema, too. My arm and hand get hot and feel swollen, but they don't look it as far as I can tell. I've had my arms measured 3 times already and they are fine. I've only had three lymph nodes removed, but the way things have been going for me lately, I feel like this issue will continue past healing. Along with my one deflated breast, I don't think this is all in the rear view mirror for me. Yet.
I am curious as to why more people seem to have tissue expanders instead of implants right away. For me, I just wanted the least surgery and have it all done and over with as soon as possible. I am just curious about it if anyone wants to reply.
Monarch - I'm not sure what the difference is with the mammaprint but they both give a recurrence result. I would imagine they would both come out with the same recurrence risk. That's the goal. Whichever it is, the waiting is always the hardest part.
In the Northeast, we are on our second of three days of rain. Thank you Mother Nature for taking care of my newly planted seedlings since I can't drag the hose around or lift a full watering can.
Well, I'm off to read the lymphedema boards. Thank goodness for this website.
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It's cold and rainy here too. I'm a substitute preschool teacher and a teacher position in a pre-k classroom is opening up for the fall. So I have the entire summer off.
Dulcea, I wanted to go straight to implants but my plastic surgeon doesn't do it that way. She said in her experience, patients often aren't satisfied with the results or need revisions anyhow. And this way she believes I can be in control of the reconstruction process as far as size I guess. I didn't want to shop around for another plastic surgeon so I decided to trust my plastic surgeon. I also didn't ask a lot of questions about this process. I'm realizing this is a lot longer of a process. So I have no idea when I'll do the exchange surgery. It will have to coincide with school time off. What is your dr saying about the deflated breast? I'm finding the expanders okay. Not too terrible. I'm most uncomfortable in my underarms and sides. I get my first fill this Friday. If my plastic surgeon did straight to implants I am sure I would have gone that way but it was so many decisions to make in so little time it was all overwhelming and I was okay with trusting the dr For better or worse
Carlsoda, that's a busy week. Good luck with the chemo. Did you have Mammaprint or Oncotype done to determine if you needed chemo or not? My sister is in treatment for stage 4 ovarian cancer and bought two wigs. One very different than the other. She wore them depending on her mood.
Take care ladies!
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Monarch - congrats on the permanent position! My oldest grandkids (2 of 9) just graduated from kindergarten and pre-k. They were so sad!! Luckily both teachers live in their neighborhood and go to the same church! Teachers are sooooo important in kids lives!!
I had the onco test with my first cancer but insurance doesn’t cover it for a recurrence. She was thinking of the mammaprint but she was positive it would come back high. And the fact that they saw cancer cells in my blood vessels both the doctor and I were concerned. I am still concerned since radiation and tamoxifen didn’t kill it the first time, I hope the chemo does this time!
Dulcea - hope your arm is okay. I am so sorry!! PT should definitely help and they will be the ones to fix lymphedema! Since I had them work on the cording in my underarm, every day I have felt so much better!
I might take my husband with me for wig shopping but I haven’t decided yet. He has a pretty strong opinion on how my hair should look 😂 otherwise I will just go by myself.
Stay dry Dulcea!!
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Historygeek - I meant to respond about your taste issue after surgery. Yes, I had coffee taste funny. I did have covid in February where my taste and smell disappeared but only for two days. I also acquired a funny "cheesecake" smell/taste during my whole covid experience. That cheesecake taste returned after both my vaccines AND after surgery for a short while. When this happens, my taste is off. I think it has to do with an immune response reawakening those symptoms. I'm sure you have thought of the symptoms of covid too, but I hope it's in the past for you now and you can taste coffee and pizza properly! Of all things to taste weird!
Monarch - congrats on the new job. I have been a special education paraprofessional for 17 years and love my job.Thankfully, I also have the summer off. Thanks for sharing your decision making. I originally was going for DIEP reconstruction but the long recovery time and additional surgeries were not part of my goal. The doctor literally did not answer me about my deflated breast. The left is beautiful! I mean beautiful! The right looks like a car accident between the two drain holes, lymph node scar, deflated breast, swollen armpit and a nice itchy rash on that side of my body. There is some discoloration on the breast too like a deep bruise. Sorry, TMI? I didn't push him for answers because I was so focused on losing those drains. I can't imagine what happened. I kept the same size (teeny weenie) so how hard could this be?
Carlsoda - Why did your doctor think the mammaprint would come back high if the oncotype was in the "no benefit" range before? I see your point about chemo though, especially with a recurrence.
Why doesn't my signature always show up right? I keep fixing it and it looks fine when I see it in my "treatments" tab but it never shows up right. I'm usually not that stupid when it comes to these things!
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Dulcea - she decided against mammaprint for three reasons: recurrence (radiation and tamoxifen failed), moved from grade 2 to 3 and the angiolympatic invasion.
I have also had issues with the signature too - couldn’t get my surgery date right and finally straightened itself out!
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hey ladies! I'm three weeks out from surgery today! Hard to believe. I was sent home with exercises to do and I did them some of the time. My husband was great and took care of the house and kids and let me rest. I gradually did more that used my arms. My right side is great. Range of motion so much better. But man my left side (cancer side) is so tight. I only had two lymph nodes removed. But I find now that I can shower that I do the exercises in the shower and the heat really loosens things up. Just wanted to pass that along in case that helps anyone. I still try and do the exeeoutside of the shower but it's harder.
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how was your recovery? The recliner sounds like it might make the first few days easier to relax. My mastectomy is on 6/2 and I remain terrified
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Hi Ava G, I understand the fear, I do. But the drs and nurses will take good care of you. I was so moved by how empathetic and caring the anesthesiology team was. I had a bilateral masectomy with tissue expanders placed as well as two lymph nodes removed. The anesthesiology team was so calm and comforting. I went into surgery very calm. No tears, no panic. But it’s ok if you do cry or feel scared. They will help you.
I didn’t have an armchair recliner. But I did buy a wedge pillow and used that in bed. On either side of the wedge I placed a pillow - one for each arm. So it was sort of like an armchair. I’m still using that set up I still can only sleep on my back- my sides are still pretty sore. I had four drains in two on either side. And that made me pretty sore.
Good luck, thinking of you
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Ava, I had the same surgery as Monarch. I'll be honest. The first couple of weeks will be the hardest. They sucked. Just remember to take things slow. I've had to repeat to myself that healing from this surgery is a marathon not a sprint. I'm 4 weeks out from surgery & am still regaining my strength and energy. Good luck!
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Hi AvaG - I am sorry you are feeling terrified. Just know that everyone’s experience is somewhat different. I just had one side done (because of fear) and for me it wasn’t too bad. My doctor put some sort of nerve blocker in and I barely felt any pain. Nothing that Advil didn’t take care of. With that being said - if you can borrow a recliner do so - I still use it some nights as I am a side sleeper. Ice on your wounds and under your arm will help so much as well as pillows. My daughter bought me a special one from Etsy and I am finally at the point where I don’t need it all the time. You’ll also need little pillows in the car for the seat belt.The nurses, doctors and staff at the hospital are all amazing and will treat you so well. Finally be kind to yourself and give yourself plenty of time to heal. I am still sleeping 10 + hour nights but boy it has helped so much. Oh and plenty of fluids - helps with healing. Good luck on the 2nd!
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Welcome to the club AvaG. Yes, my recliner was great the first few days. I highly recommend it if you can get one. I agree with the advice to drink LOTS of water. I ended up back in the hospital five days after surgery due to dehydration. Between the pain and the nausea from the antibiotics, I didn't really want to move and didn't eat or drink a lot. Stay hydrated and keep moving! I also agree that the doctors, nurses, and staff are so kind and comforting when it comes to this surgery! Prior to surgery, I stuffed the freezer with food that just needed to be reheated and got everything in order for my recovery. It was helpful for me to keep very busy the few days before surgery. Good luck tomorrow. You will be fine once you are on the other side and can focus on healing. Check back in with us.
Monarch! Congrats! Today is my three week mastecto-versary. I am having the same tightness on my right (cancer/lymph node side). My left arm is almost back to normal but my right has a way to go, and of course, I'm a righty. I haven't been given exercises to do yet, but doing them in the shower is good advice. I'll remember that. These last two days I have felt a lot better than just the few days before that. There is a light at the end of this tunnel! I can see it!
On my signature, I figured out that I had to make my new treatment "public".
Keep healing everyone!
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how was your recovery? The recliner sounds like it might make the first few days easier to relax. My mastectomy is on 6/2 and I am terrified of the recovery
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Had an appointment with the PS to check on the incision he had to redo. Everything looks good. And my drains are gone! I finally feel like I can move again. Still taking activity easy because I do not want the fluid to build up at all. I go back in 2 weeks to get my first post-surgery expansion.
I am also still waiting on the Oncotype test to come back.
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Wow everyone is coming along, that is great! I don't think anyone can truly prepare for recovery because it's different and it changes throughout. There are def ups and downs. It's quite the experience.
I am trying to figure out if the lump under my lymph node incision spot is just normal fluid or scarring or if I need to be concerned? It's prob the size of a grape maybe?
I was having more fluid on my left (cancer) side, like the side boob area, but I've been compressing with rolled up gauze and that has seemed to help. In a strange way, my left side/arm stretching is easier than my right? My right side below the chest line, like my upper ab area is really sore this week. I don't know if maybe I was using that muscle more to get up or something and it's just worn out?
AvaG - I had lumpectomy with oncoplastic reduction, so I can't speak to mastectomy recovery, but I would say you really have to take it easy and give yourself time. Also not sure if compression is as important during mastectomy, but if they recommend it def do it, it helps. After my meds wore off, I was so itchy and irritated that I used a softer bra for 2 days and I think that is what caused fluid to build up. Then I had to really work on compression, sometimes wearing 2 bras and also stuffing padding and gauze in areas to help compress more. It's a balance between letting your body rest/recover, but still walking and small movement to not totally lose mobility.
I was given exercise by occupational therapist, but I wasn't really told when to do them. I've done them here and there. I was told to do normal things as far as washing my hair, etc, just not to lift anything heavy, esp with the cancer side arm. I am def more concerned about lymphadema now and I am learning more, which I wish I was told more. I read about being careful not to hurt that arm in any way, like cuts or anything, so as not to aggravate the lymphatic response I guess?
going to start heading over to the radiation threads because I have a lot of questions coming up for that....
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Btwnstars - good luck with radiation - I had like 33 rounds of it and my only issue was exhaustion by the end. Skin was good (I hardly ever burn so that likely helped) and I lost weight as I was too tired to eat ☺️
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historygeek- so glad you got your drains out. It feels amazing. I have had quite a bit of tenderness and soreness and pulling in that area but it’s getting better.
Carlsoda, I didn’t realize this is your 2nd round of cancer. So sorry about it. That really sucks. You’ve been through a lot. I hope this treatment plan finally gets rid of all of it and never comes back.
Btwnstars, good luck with radiation.
I did way too much today - and I’m paying for it. So tired. Hate feeling this way. This is a marathon not a sprint. I need more rainy days to keep me inside resting.
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I agree with previous comments about not getting enough information about recovery. I was supposed to get some kind of book, which I never got. I felt they couldn't get me out of that hospital fast enough and my doctor has been hard to reach. But I figured I only got a lumpectomy, so maybe I am making too big a deal out of this whole thing. So I decided to just get on with it, but now I have this weird painful swelling where they took the lymph nodes out. Don't know what that is, didn't have it the first time I had lumpectomy. Have a call in to my surgeon, but they are taking their time getting back to me (so again I wonder if I am making too big a deal out of it). Probably pushed myself too fast , am trying to get back to work next week. My emotions are out of whack this time, I sailed though my first cancer four years ago (but thinking back I also took a lot of time off from work to recover - had great sick time benefits then). I've had some pretty intense feeling sorry for myself crying jags this time. I'm thinking about antidepressants if this persists - or maybe therapy - I've been feeling kind of despairing feelings about what my future holds, and what's the point etc. I am also a gardener- and the sunshine and distraction and peace of that activity really does help.
Appreciate reading about everybody's journey. Lots of wisdom and honesty here.
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RedMoon: try ice on your underarm. I also pushed it a bit too much (gardening) and my whole side got swollen. Surgeon told me icing is good so I went with it. It helped so much!!
Have you seen your oncologist yet? You need to get on tamoxifen or AI’s to reduce more future risks.
Sending you hugs!!
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Thanks Carsloda - I think that is what happened to me too. Had a birthday dinner for my son and probably held my beautiful grandbaby more than I should have. But I will try the ice.
You are so right about the AI's - I half-heartedly tried them last time, but they made my joints hurt. Plus the oncologist told me it would reduce my risk for future cancer from 4% to 3%, so the grief didn't seem worth it to me. I am sure kicking myself for that decision. I see the surgeon for follow-up on the 8th, and I am anticipating a referral for more radiation and AI's. I'm going to take the AI's this time, no matter what. This is your second bout with breast cancer too? Was this one harder for you or was the first one harder?
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not necessarily more harder but very disappointing. I had a lumpectomy with good margins, radiation and took tamoxifen the whole time. This time it was a mastectomy since I am so done with this, chemo (grade moved up) and AI’s. Also make sure to try different drug manufacturers with your AI’s, there area lot of other ingredients in our meds and it could be one of those that bothered you. After I tried a few for tamoxifen I found Mylan didn’t give me any side effects!!!
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carlsoda and RedMoon I’m sorry you’ve both had a reoccurrence. You did everything you could and you had such a low Oncotype carlsoda. It’s so frustrating as we don’t really understand breast cancer enough. We’ve made great strides. But it’s not enough.
It’s comforting that my cancer was caught so early and not in my lymph nodes. But it’s not a guarantee. That’s what makes cancer so hard.
Hugs lad
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Carsloda - I totally get feeling "so done with this" I had another lumpectomy, since the new tumour was in my other breast, diagnosed as a new primary cancer not a recurrence, which I guess is good but leaves me wondering what is going on in my body. I don't get my pathology results back until Tuesday, so I don't know what follow-up treatment will be yet. Thanks for the tip about trying different manufacturers for the AI drugs, I don't think I gave it enough effort before but I'm going to get it right this time. Things got real for me this time around. Hope you are feeling stronger and getting better.
Monarchandt- Cancer is hard! I thought I was OK last time - like you, my tumour was small and there was no lymph node involvement. And then i got it again. Don't want to scare you because I think my experience is not the norm. My surgeon told me I was just very unlucky, which wasn't much comfort. But you put one foot in front of the other and do what you need to do. What else can you do? Hope you are taking it easy and giving yourself the rest you need.
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RedMoon sorry to read about your second time around. That def sucks. And on issues with getting support/answers. If you see my vent post under "waiting for results" I am right there with you. I am 3+ weeks post-op and still waiting on oncotype test results that they told me would be 2 weeks. I don't care if there is a delay or something happened, but just would appreciate being informed. Or I wish they would've just said it can take 2-4 weeks, just so I'm not getting stressed out! I would definitely continue to call your doc office, leave messages and email anyone. Do you have nurse navigators?
I've been doing it. I feel like a pest, but I know I have to just keep trying. I actually got into a tiff with my partner because he is getting upset by the delay, but I don't know what more I can do but call/email?! I don't really see the point in calling and getting angry about it. I am trying to stay calm! That was one thing we agreed on, they give us resources with navigators, advocates, etc, but then generally the delayed response from the office is the reason for the anxiety. Just tells me there's way too much cancer and what the heck are we doing to try to stop that?!
I am on some sort of vicious cycle because it seems Fridays are my anxiety day, yet my weekends have been glorious having downtime to do what I want. I am considering some talk therapy and have been looking into counselors recommended by an breast cancer organization.
It is going to be getting hot here, so I am not really looking forward to much outdoors time with having to be careful with skin in sun and can't swim or anything. Going to have to just be thankful for air conditioning I guess!
Stay well ladies.
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I answered in your other post Brwnthestars, but I feel the same with the mood cycles and all of this. Though my anxiety days are not necessarily Fridays! I do ha e a therapist I skipped our last session which was stupid on my part but I had plans haha I journal A LOT
When I was diagnosed I had this moment of needing to live life NOW. So last weekend we bought a camper. It’s been a long time dream of mine. I tapped into money I had set aside for when I’m older. But there’s no guarantees I’ll be around or healthy enough. Not trying to be depressing. But I’m trying to take cancer and learn something good from it. We pick up the camper tomorrow. And I have a week with just me and my two younger kids booked at a close by state park. I desperately need a reset. I’ve spent so much time in my house. I’m not gardening much. Won’t be swimming. So looking forward to the woods.
I had my first fill today and it was good. They look fuller. I’m excited to see them grow. Wasn’t used to litte A Cups.
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Monarch - go live your dreams. The camper will be a godsend for you and your family for many many years. Lots of good memories!
Just do what you need to do medically and go live your live. There are no guarantees for any of us (and those who have never had cancer).
Hugs!!!
***and remember medically things are so much better today then even a few years ago. Always something new on the horizon being developed which could totally cure all of us - try not to get too ahead of yourself with your thinking ***0 -
carlsoda- thank you. Yes we’re really excited to go camping.
I had my first fill on Friday and I was so cranky on Sunday. My boobs felt so tight and hard. If I reached to get something my skin on my sides near my ribs felt tight too. It’s a bit better today. This expansion process is strange. They do look bigger. Anyone else getting fills?
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Monarch, no reconstruction for me but my prosthesis arrived today! I can officially go out to a function and not feel weird! I only plan to wear it for special events. I am able to stuff with a knitted knocker and not look too weird when I am out and about 🤣
My coworker had expansions and I remember her saying they were pretty painful and tight. But it will get better - I bet kinda like braces when we were kids. When they made adjustments it hurt like heck for a week then got better ☺️
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btwnthestars, did you get your results yet? My appointment is Monday for my Mammaprint results and I just messaged my drs office to see if they are in and so far they are not. Frustrated! It’s so hard living in limbo not knowing what you’re next step is!
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