June 2017 Surgery Group
Comments
-
SBKH I had crusty blood on my scar for a while after the steristrips fell (with my help) off. Mine healed up okay. I would leave it alone and call the nurse on Monday and I bet she will reassure you. I'm sorry it is so scary. Also it is the first time we can really see the scar.
I'm still waiting for my Oncotype score. I was supposed to have it last week. I was told to text my Onc on Tuesday. Everything has been so favorable so far that I am not expecting a high number. I just would like to know for sure.
I began Arimidex and I have had a waxing waning headache since. I'm hoping that it is one of the side effects that goes away. It is a weak area so I could have predicted it. I've been reading on the Hormonal Therapy board. I'm aware that some have very little SE's and some just can't stand it and stop the meds. I have figured out that i am freaked by the 5 year thought. I am working to just do one pill at a time.
Many thoughts and prayers for those going on for chemo and radiation. I will keep you in my heart.
0 -
Hey toughiebird,
I wore yoga pants and a sleeveless button up shirt home and stayed in a recliner during the day but at night slept with a euro square pillow and regular pillows behind it to prop me up in bed. The drugs will help you sleep!
SBKH, I also had the crusty /scabby incision but no steristrips (which made me really nervous) and the doctor allowed me to shower the 2nd day I was home. It was scary to dry (gently pat) the area but I'm almost 6 weeks out now and the incision is just a small line, it looks great.
SusanGa, I'm still waiting for my Oncotype too, it will be 3 weeks wednesday and was also delayed, this wait has been the worst. I start Arimidex next week as well and somewhat concerned about the side effects but I'm trying not to read too much about it and just see what happens (other than the bone loss!)
Continued prayers for all of you!
0 -
Love reading about each of your journeys! All of you are inspiring & awesome!
Final drain came out Thursday, then port put in & first chemo on Friday. Feel great! MO told me to try & walk .5 miles daily to help with circulation/neuropathy and also should help energy levels. Went to Planet Fitness yesterday and did the .5 miles, today - .6 & 10 minutes on a bike. Very thankful that i'm getting the weekly dose instead of the 3 week megadose. Not sure I'd be up to that. I am a high school teacher with kids coming five weeks from tomorrow.
About the drains ... my last one was in 5 weeks. Week 4, I was told to not do anything. I was walking, doing the arm exercises & doing light stuff. It was very hard for me to sit, but I did for 6 days and wore a sports bra 24/7. That along with 2 fills and the drain finally dropped below 30. My daughter told me to put my patience panties on. Finally getting the last drain out was wonderful!! Best thing since the bmx.
lllimae wrote "...we have to find a way to be aware & move on"
My husband & grown kids were shocked about the chemo/radiation. When the surgeon said they got clear margins, my family took that to mean they got it all so no need for chemo/radiation. As the MO & RO explained, there can be rogue cells that are already in your body & they are trying to get those.
No one wants a reoccurance. Most of us just started down this path & don't want a repeat. Most of us will deal with this just the one time. If not, follow the example lllimae is setting for us. She is a warrior, fighting the reoccurance - yet, living her life on her terms & helping us down this road. Let's take her advice - be diligent about checkups etc, but we need to live our best lives ever!!
Have a great week!
Ouray
0 -
JMBG My Oncologist told me that it was a delay in getting insurance cleared. Are you perhaps dealing with Winship? Everything has to go through downtown. I love my oncologist but sometimes the "bigness" of the whole place is daunting. Sometimes the network is a little overwhelming although very efficient
Have a healthy week ladies. Stay strong
0 -
Thanks for the kind words Ouray.
I still have my axillary drain in, I'm hoping tomorrow is finally the day. I'm very happy to hear that you're able to be active so soon, it truly does a lot to keep fatigue at bay and the steroid chemo premeds make it easier. The Port can be tricky, for me it was a little weird at first but I hardly noticed it after a week (hopefully, your port surgeon was dr. Brown and he sang to you).
Just to clarify, I was diagnosed last November at stage IV from the beginning, so this is new for me too but I decided early on that I could lay down and worry or stand up and push on. Also, I just turned 42 and I've got some more livin' to do!
0 -
lllimae, did not realize that you were stage 1V from the beginning. That must have rocked your world. Amazing that you are so strong and determined to get to that livin'. Yes, Dr. Brown did the port & sang all through the procedure. Started with Moon River, then Dream a Little Dream of me. I remember A Wonderful World & just know he sang more, but with the cocktail, I don't remember the rest. It was awesome!!
Glad I feel like exercising, but I am realistic that some days will be harder than others as I have more treatments. Trying to do this chemo thing a day at a time, just going with how I feel.
0 -
Ouray, it was quite a shock, it wasn't even on my radar. My first ever mammo was a year and 1/2 earlier (all clear) and I was at my PCP's office 2 days after finding the lump, thinking i probably caught it early if it was cancer. The first couple weeks were dark but one I had a plan, I was all in. I realize things could always be worse and focus on what I can control, my super supportive husband has also been a critical factor, poor guy even has sympathy SE's.
0 -
lllimae, for rads I started the cream right away. Ask for the prescription strength silver/sulfide cream. Rads can make some people tired, so be prepared for that. Each person responds differently. I found it much easier than chemo.
0 -
Well here it is Sunday night and my Oncologist just called me to tell me I have a Oncotype 23. This is exactly what I was afraid of. Solidly in the intermediate range. So once again this decision is up to me. To chemo or not to chemo. When I really pushed him he said he does not feel it would add that much benefit. About 4 percent. The issue for me is it is hard now to have peace of mind. I've decided to ask for a Mamaprint. He said he was okay with doing that test. Any ideas?
0 -
Susanga sorry about the news.. I'm not sure what I would do if in your shoes. Very soon I'll have to make my choices and I'm currently in the fence i will have the additional tests done and then decide
0 -
Sorry Susan and Mucki. I hate having to make decisions too. I am definitely a black and white person. I don't like grey.
I need to decide if I want radiation on either side and if I want additional sentinel node surgery on my surprise side. My core biopsy positive node was clean on my right side upon mastectomy. So radiation or no?? I have decided yes on that side. My "clean" breast we did not do sentinel node testing on because it was supposed to be prophylactic. The surprise cancer was smallish and low grade but still IDC/DCIS Nodes look good on MRI and drs are on the fence as to additional surgery to be sure or just watching and tamoxifen. Already did chemo and
0 -
I did the Mammaprint and it came back high risk, so I had chemo. Make sure your insurance will cover it. Two years later, I got a letter from Agendia stating Aetna denied the claim. It's a newer test, so look into the cost. Agendia settled the bill with me for $500 versus $4,000. 🙄
I do so hate the ambiguity that occurs with this disease. The doctors only know so much and each one seems to approach things differently. When I was diagnosed with LCIS a year after my first tumor was found, the doctors still didn't think I should have a double mastectomy. Made no sense to me. I found both problems with self exams, I have dense breasts, things don't show up on a scans, and a strong family history of cancer.
One dr said, why do surgery now, just wait until it comes back. I was like, there isno way I am doing this mammo, biopsy, wait for the news, surgery, wait for more news, chemo and radiation shit ever again. F that!
0 -
Thanks for the rads tip flbuckeye
Well, had another follow up with my BS today and the dreaded drain stays, however, we switched to the smaller, granade shaped bulb. My fluid ml's got down under 30, then jumped up to 60 for a couple days, ugh.
0 -
Sorry SusanGa, I wish the test would have given you a definitive answer.
0 -
Sorry about the drain Illimae.
That's still a lot of fluid a month later. Not really a contest you want to win I'm sure. 0 -
Toughiebird: When's your surgery, and what are you having done? I'll be thinking of you and sending positive, healing vibes...
- Sleeping: I slept in a recliner the first two weeks. I felt more comfortable not worrying that I'd "accidentally" roll over, as I'm a side-sleeper. Once the drains were out, I moved back to the bed and sleep on my back, propped up a bit. I'm almost at my "normal" propping point, but still on my back (which I hate).
- Reconstruction: I've seen different posts -- it may be dependent on what your plastic surgeon says. Mine wanted me in a bra for the first month, 24-7 (well, except for showers). He recommended a cheapie cotton front-close Fruit of the Loom that Walmart sells for $8 (you can find it on amazon too). I still wear them -- I'm not investing in good bras until my expanders are done being filled!
- Hospital: I slept in the hospital gown. I brought a front-button pajama top and loose cotton yoga capris to wear home. (My stay was <24 hours.)
SBKH: I wouldn't worry until you see seepage or similar. I had a small spot on my incision "pop open" and no one freaked out about it. Just kept gauze on it.
0 -
I'm pretty much the same as Jenruns. Tired of sleeping on my back too!!! I have an adjustable bed so that is helpful. My kids or hubby had to help lift up the footrest part of the recliner as I couldn't reach over the side of the chair for the lever. That got old quick but they never complained
I was in the hospital gown until I left, then just sweats and a soft zip up hoodie. My PS said no bra -and I'm still not wearing one. Not sure if that was because I had skin/nipple sparing and above the muscle immediate Implants. He wanted no pressure on the nipples.
0 -
Susan, Mucki & Legomaster...almost seems unfair all the decisions that must be made with bc. I don't like grey either, yet it seems the doctors want to give us the information & it's up to us to make the final decision. Hopefully, all of you can make a decision you are at peace with.
lllimae, getting my last drain is the best!!
Toughiebird - good luck! Everyone has given great advice! Getting sleep or lack thereof is my only gripe. Seems, I fall asleep on my right side (but te's become uncomfortable), so switch to my back (till it feels like it's going to snap), then switch to the left side ( but there's another te). I am sleeping more during the night, but waking up several times a night isn't good. If it's not better when school starts in 5 weeks, it's going to be rough.
Guess the chemo hit today - had a light headache & body aches. Not bad, but felt like a mild flu or virus. Still a good day & I am still so grateful to have made it through surgery & recovery. Going to focus on chemo & school this fall. Enjoy the holidays, then do the radiation. Maybe by summer, get the implants done. This journey is definitely a marathon!
I'd like to start radiation about 6 weeks after chemo. Does anyone know if that is a problem? The RO said at least 3 weeks between, but that should land during Christmas & I'd really like to enjoy the holidays & have a break between the two. Any thoughts?
0 -
Hi - I haven't posted in a while. I hope everyone is well. Since I was having such bad nerve pain, I told the oncologist that I wasn't going to start chemo until I felt better because I couldn't image adding the Chemo SEs on top of the pain. That seemed to motivate them, and they talked with the surgeon and put me on Gabapentin (Neurontin). The pain is not entirely gone, but it has helped dull the pain at least. If this does not work, then they will refer me to an in-house pain management specialist. I'm also going to look into acupuncture, since a friend at work told me it helped with her neuropathy pain.
I had a bone scan yesterday, and I got a bad feeling from it. After the scan, I thought I was good to go and then they made me come back in and take more pictures in my mid-section area. The technician was also acting different towards me, so I have a feeling she saw something bad on the scan. So now I'm waiting to get the results, which could take up to three business days.
I posted this in the August Chemo thread, but I wanted to pass along in this thread as well, since a number of us will be starting chemo. In one of the other chemo forums, I saw this tip. I can't remember which forum though. There is a website, www.breastcancerfreebies.com where you can order some free things like a headwrap, hats, Quesy Pops, etc. I ordered a few things, so I'll let you know if/when I receive them.
The other site I saw in a thread was Sparkling Earth Products at www.sparklingearth.com They have very reasonably priced skull caps - the caps in the Clearance section are around $5.95 with some cute patterns like plaids and florals as well as solid colors.. There is a section of hair loss caps too. At those low prices, I ordered a few. Will let you know how they fit when I receive them.
Anyway, thought I would pass along the finds to everyone. Hope everyone is having a good evening!
0 -
teaspoons, I hope you start feeling better asap. About the scan, did you have scans before surgery too? If they did see something it could be an anomaly or cysts or whatever, I know it's impossible but try not to worry too much and please do give an update later. Until then, happy shopping and if you chose to go capless sometimes, bald is very refreshing
0 -
llimae, I did not have a scan before surgery. It was my first time, so they have no comparisons. Oh well, I'm trying not to worry too much. I started back to work part-time, so that has been helping to keep my mind occupied.
I'm pretty nervous about my first round of chemo next week too. My daughter has convinced me to color my shoulder length hair a cool color before it falls out - like maybe a deep purple or pink. May as well do something fun and cheery with it before it's gone.
btw, I forgot to post a discount code I found for Sparkling Earth - FACEBOOK10. I used it and got 10% off my order. I do plan to go bald sometime too - my husband and I can be twins!
0 -
I agree with your daughter, go for something short and fun before you buzz it off and chemo wasn't nearly as bad as I thought it would be. Honestly, I think I'd rather have a round of chemo instead of this darn axillary drain for another week. You got this
0 -
I kinda agree Illimae. Chemo wasn't so bad. Surgery recovery is taking me a bit longer. I had my first PT appointment today and it was heaven!! She was able to release the cording in my arm if only for a little while. She did teach my husband though so that will be good. The lymphatic massage helped with swelling too. My husband will do every night until I go back to pt next week. Hopefully By then iwill be able to raise by right arm above my head for radiation therapy next week.
0 -
I can't wait to start PT! Glad to hear it's going well!
Did anyone here get a choice about Tamoxifen? My surgeon thinks I can refuse it, the oncologist says I should take it. I have an underlying condition for which it is contraindicated, but dr wants to manage that with monitoring through blood draws. Would love to know how people who did or did not take it feel about their decision. All it does is reduce risk in the remaining breast by a few percent. And it has no impact on survivability. It's hard when there is no consensus. The oncologist and surgeon even disagreed on what surgery I should have!
Meanwhile- does anyone have any prayer requests? Still pulling for all you ladies- especially those moving on to chemo/radiation.
Hugs
0 -
I'll take all the prayers I can get SBKH. I have not started tamoxifen yet but I have my prescription filled for when radiation is over. I guess I haven't seen the studies you are referring to saying it doesn't help. Everything I was told and even the oncotype reports show it reduces recurrence. I'm counting on that! I don't have a remaining breast so I sure hope that is the case.
Can you possibly use an AI instead of tamoxifen with your existing condition? It is frustrating when your doctors are on different pages. My BS and RO have differing opinions too but can at least come to a concensus.
0 -
Praying Legomaster!
So my drs are saying it DOES help- they just have differing views of how much. Surgeon thinks it helps some, oncologist thinks it helps a lot. I'm just struggling because of my other disease that will potentially get worse since its contraindicated for Tamoxifen. I'm pretty confused
0 -
Hi Teaspoons, I am praying for you. I hope your scans come back clear.
0 -
Lego, I had my first PT today too but only discussed where I am currently and took measurements. Couldn't do anything else because I still have a damn drain! Arg!
SBKH, I was given the option of tamoxifen or AI, tamoxifen recommended for now and necessary since I'm ER+ and premenopausal and at stage IV, I'm trying everything. I started it about 2 weeks ago and so far I just have some mild night sweats. When I wake up from it, I go to the kitchen for a popsicle, then back to bed.
Hopefully all these treatments work to prevent new progression and heal my bone met cause I plan on turning 50!:)
0 -
hi all, I've not been online for a while and a lot has been happening here! For all moving on to chemo and radiation, my heart goes out to you (and prayers). I was told yesterday I scored a 12 on the oncotype test!! I've never been so excited about a low test score, and will definitely celebrate this weekend. I also picked up my prescription for Arimidex today, hot flashes and more fun, here we come! So, there will not be a bald family Christmas card this year after all.
I think about you all and pray for progress, continue to find your strength and allow others to assist you. Much love ❤️0 -
What's up with the drain Illimae? Your surgery was just a few days after mine. I feel bad for you , those were such a hassle. I guess it's better to have a drain than to have it all building up inside and swelling though. Swelling is not comfortable either. I hope it is at least slowing down for you so you can see the finish line.
JMBG, it's a good thing you didn't study any harder for that test
Congrats on the low score. I feel like an overachiever with my 39! Chemo worked great though. I wish I could get the oncotest on the surprise tumor they found in my other breast at my BMX. Since I already had chemo insurance won't cover it. Im just curious It wouldn't change my treatment plan0
