November 2015 Surgeries Thread?

Smurfette26

Hope the exercises help TikkasMom

Welcome to the forums sonyaryan. Sorry you have found yourself here. The tears, the emotions you are feeling are all very "normal". It's a huge thing we are dealing with. If you haven't already, maybe see your Dr and get something for anxiety or something to help you sleep. I found once I was sleeping better I was far less emotional and could function better during the day. My hubby feels helpless too. This is something they can't fix, make better. My hubby attends every appointment and treatment session with me, helps more with practical things around the house like cooking and cleaning and he cuddles me a lot. Not much to offer on the issues with your arm sorry. My mastectomy was October the 9th and I was lucky to make a good recovery. I have a fantastic range of movement and very little numbness. Have you spoken to your surgeon about these issues? Hope you are feeling better soon. Hugs Donna.

Anonymous

I just got back from my second-opinion oncologist, and he is also going by the "standard" recommendation of Taxol and Cytoxan for 4 rounds. However, he told me about the RxPonder trial that targets women who have 1-3 positive lymph nodes and scores of <25. Even though the trial is closed, he said it is perfectly "reasonable and ethical" to forego chemo. To me, it means someone with an oncotype of 25 and 3 lymph nodes could go
without chemo according to the trial, and I just have one positive lymph
node with an oncotype of 15! He said that regardless of my score, someone with my type of cancer gets about a 5%
benefit from chemo over 10 years. So that is the point of the trial, to show that the "5 percent" recurrences are in women who have high recurrence scores.

His plan for me with or without chemo would be to do Arimidex for 10 years with Zometa infusions every 6 months (because of my weak bones). He said that Arimidex is shown to have a 1% benefit over Tamoxifen, and that Zometa has a further 3% benefit in overall survival. I am all for those *proven* odds. I just don't want to inject a poison into my body if the question on whether it will hurt or help me is still up in the air.

I am SO glad I got a second opinion. The doctor, his nurse, and the whole staff were so kind and caring, and went out of their way to make me feel comfortable. I hope my story can help others make their decision, because having to make the choice is not easy at first. My advice is to get as much information as you can before making any decision. Get the oncotype/mammaprint/etc. READ your pathology report. Get a second opinion, because you ARE worth it, and these decisions will impact the rest of your life.

Best wishes to you all. God bless.

TallnTerrific

lovingisliving--awesome that you results mean no required chemo for you. I think they are finding more and more that the risks of chemo have to be considered in the analysis to assure that they are not curing you of one thing just to harm you from the chemo side effects

Mominator

sonyaryan: welcome! This is a great bunch of ladies here.

live4them: hoping for a great score for you.

marie711: I hope you lymphedema is better.

britheal: congratulations on 47 years together. Here's to many, many more!

Frill: thank you for the Lucy Lawless stories. I'm sorry your boss is such a jerk.

ChiSandy: I'm glad you enjoyed your trip.

Natjordlee: I'm sorry about your drainage. My mom had no drains for her lumpectomy, axial dissection. She had to be drained several times and it was very painful. I hope yours settles better, especially with your new drains.

Lovingisliving: I'm so glad you got a second opinion.

Smurfette: Thinking of you and hoping that this chemo is treating you well.

new_me/Diane: I hope you are well. Miss you.

Mominator

Appointment with PS yesterday.

Now that the debridement area has healed, I had my first fill since surgery. He added 60 ml, so now I'm at 480, and my breasts are rocks again.

I am having a problem with the left TE. It seems to have shifted towards my armpit and it sticks out a little bit from the side. When I move my left arm, I feel I'm brushing against my breast. Even worse is that TE is also poking and hurting me in the middle of my breast. First thing every morning it spasms and really hurts. PS said he could see it poking out just a little bit, and it would be corrected at exchange. He also had the nurse take pictures of my breasts from the sides. Nurse says I still look swollen to her, though much better than that first visit after surgery.

Stitches came out also, and that looks so much better. There was a lot of the durmabond all over the incision lines. I tried to help it fall off. Then that creeped me out and I got nauseous so I stopped.

Between the holidays and his schedule, I get almost 2.5 weeks until next visit.

katykids

Mominator, I felt like all of the tissue expanders were in my armpit. My shirt seams were over them. Do you know how far he is expanding you? And do you take muscle relaxers for the spasms?

Glad you have healed from the debridgement. I met a women at PT who had that also. She has her exchange next week.

Smurfette26

Mominator I have been very well the last 10 days or so thank you. Had a wonderful family day yesterday at my grand daughter's 2nd Birthday party. That will change again next week as I have chemo number 3 on Tuesday.

Hope everyone else is travelling well. Hugs all.

Mominator

Smurfette, I'm happy to see you are doing well. Happy birthday to your granddaughter! Two years old is a fun age.

Katykids, Wow, so you feel the TEs all in your armpit? Yuck. Are your breasts still numb at all? I'm wondering if you only feel it in your armpit if your breasts are numb or if your TEs are pushing into the sides.

I haven't taken muscle relaxers for the spasms. This is the first fill since surgery 6 weeks ago and these muscle spasms are all new. I had weaned myself off Percoset 5 days after surgery, and Tylenol about 2-3 weeks after surgery.

Right after surgery, my breasts were bruised and swollen and somewhat numb. Everything seemed to hurt, although I couldn't say what. Maybe I hadspasms then, but it was part of the overall pain. Now that the bruising and swelling has gone down, and the numbness is going away, I can now feel different things. These spasms are distinct, and are the worst first thing in the morning. Fortunately, I don't have them very often nor as strong through the rest of the day.

I think my PS would expand me even more if I want, as my TEs have a 650 fill capacity. However, I'm at 480 now and my breasts actually look too big to me.

My hubby thinks I look great now. But he has only seen me in clothes. He has said he would probably pass out if he saw the incisions.

Live4them

Hey ladies , well I'll be at 6 weeks post op tomorrow .. My left nipple seems to be hanging for dear life , I wish my PS had done a debridement.. But he wants it to happen naturally I guess . I still have a pretty big black scab on my right nipple . I see the PS tomorrow I hope he just pulls these scabs off so it can get to healing underneath . 6 weeks of gauze and tapes are truly annoying .. As for feeling things in your armpit lol .. I had direct to implant and at first I felt the entire thing was under my armpit . Doctor said that feeling was normal .. As the muscle has gotten use to my new body I do feel less under my armpit but it's not completely gone . When I have my revision surgery I'm gonna make sure nothing goes over there .. I also am feeling tighteness especially at night . I'm not sure if this is normal so far along .. Hope you all have a nice holiday ❤️

katykids

mominator, i read somewhere it was the shape of the tissue expanders--which is different from the implants--so they fill differently.

The PS sometimes overexpands the TE before implants. My TEs were 500 and expanded to over 700.But I really wanted to not look like i had implants. I have 620 implants. They felt huge at first but everyone says i look similar to my old size just perkier.

Also, so i have been told those spasms are the nerves regenerating.

I think this is where i read it. Link challenged on phone.

https://community.breastcancer.org/forum/44/topics/819027?page=51#post_4409362

Natejordlee

Mominator - thanks for the kind words. I got a drain and it wasn't terrible and we were able to get my radiation simulation done but Friday night , twenty minutes before my guests are due for a Christmas gathering I pulled it out SO Monday I got back but it didn't hurt and it was much easier to get all my things done this weekend. Glad everyone is doing well! For those on Chemo now I will keep you in my thoughts, I remember those days too well. Stay hydrated and rest but most of all enjoy your Christmas everyone !!

new__me

Mominator (and all the November ladies)

I decided it has been too long since I posted. My PBM was one month ago and i am finally starting to feel like i am healing. It has taken this long for my incisions to finally shed the glue and scabs. I am an insulin dependent diabetic and wounds sometimes take a little extra time. I had my first fill last week (100cc each) now i am at 350cc each side. Next fill in a week. Not too much discomfort. A bit sorevfor a few days. Hoping next fill goes as well. I want to tell everyone how special my husband has been through all of this. He has emptied my drains and checked the incisions each day. We both lost our jobs two years ago due to downsizing and have exhausted our unemployment benefits. It has brought us closer and now my brca2 finding brought us even closer after 38 yrs of marriage. We are clinging to each other and trying to make ends meet. Praying that God will guide us as He always has. Jobs are scarce in our area, especially when you are 60 and 62. But we do feel blessed that my PBM was clear. Even with an 85% chance of getting breast cancer i beat the odds. For that we are most thankful. Please remember us in your prayers.

TallnTerrific

I am visiting family for the holidays in FL and it seems that the travel, the weather, different beds every night and the fast paced schedule make it very difficult and I don't feel too good. When I was at home with a moderate schedule I felt great and thought I could do anything. It all adds up. Everyone thinks I am fine, because I was doing all of he regular stuff at home. It is difficult to say, "wait a minute, I am hurting and can't keep doing this" when all of this has been planned for over a month. Also one of my sweet sisters is dying and she is one of the people I need to see. Also right before we left home I had some pus and blood leak out of one of my incisions at the tip (where the nipple would be). I have not had this bleeding at all since the week of my surgery. I don't know why it suddenly started to bleed, but there are also new bruises on the outsides of my TE breasts. Sometimes it just seems like by evening they are rock hard and don't want to relax.

So I have a few crazy questions:
Can anyone tell me if we ever get back to our reconstructed breasts feeling normal and not hurting? Has anyone else without nipples had the feeling when you get a shiver that your nipples are erect even though you have none?

I want you to know new_me that we are praying for you and know that something wonderful will happen. The paraphrased devotion from Sarah Young's book "Jesus Calling" is really for you today. It says:

"I am King of Kings and Lord of Lords. . .the one who never lets go of your hand. Worship me in my holy Majesty; come close to me and rest in my Presence. . . .Since I went to such extreme measures to save you from your sins, you can be assured that I will graciously give you all you need!

Nurture well your trust in Me as Saviour, Lord and Friend. I have held back nothing in my provision for you. I have even deigned to live within you! Rejoice in all that I have done for you, and My Light will shine through you into the world!"

I think you should also check into social security (you can start collecting at 62) and disability as well. Perhaps it is time for the 62 year old to take the retirement and the other to keep looking for work that will supplement. Medicaid should pay your bills until you can get Medicare as well. This is not my area of expertise, but it is worth scheduling a meeting with the social security administration to see what can be done.

We are all rooting for you!

Tall

letsdothis15

I feel a nipple sensation where there are none, Tall n Terrific.

Hi everyone! I had surgery 3 weeks ago and am doing pretty well. 2 of my 4 drains are out now. One isn't putting out much at all and the other is a little cloudy- kinda worried about it but no smell. My appointment is Wednesday. Debridement doesn't sound like something fun!

I hope everyone is doing well! I had 420 cc of air put in at surgery and they switched it to saline last week. I am hoping I can get a little more this time. they are funny shaped but my PS assures me it's temporary.

Happy New Year! May our 2016's be much better than our 2015's!

Cindie

TikkasMom

Good luck to everyone and Happy Healthy New Year.

Mominator

Hello lovely ladies! I see all was quiet on the board during Christmas break. I hope everyone had a wonderful time with their families and friends. We visited both sides of our family in Massachusetts.

My Mom is healed from her lumpectomy and axial dissection surgeries, and has finished her radiation treatments. She (80) and Dad (84) have both hurt their backs recently and are having trouble with daily activities. My brother and I are glad her doctors didn't recommend chemo.

Live4them: I hope you are healing well, and lefty is doing well. I wanted the black patches to heal naturally, but PS felt it had pinked up as much as possible and he wanted to prevent infection. Let me know how your appointment went.

As for my armpits, I'm a little less tight, but there is still muscle and tissue in my armpits. I told PS that I am a flutist, and when I play now I'm pressing against my breasts. He said that would be corrected during the exchange.

Katykids, thanks for all that info.

Natejordlee, I'm glad to see you're progressing. I'll be thinking of you as you start radiation next week. My Mom had rads both in 1997 and 2015.

New_me/Diane: good to see you back. I'm glad your PBM was clear.

TallnTerrific, I had some leakage during debridementand and a week after as well. We are still healing, which is so hard to tell family members who have been waiting to see us. I'm so sorry your sweet sister is dying. I hope you had a lovely visit with her.

It's so good to see you Letsdothis/Cindie! I looked for you in the December thread but didn't see you. My drains got a little gross towards the end so I started rinsing them out, mostly with just water, but a couple of times with rubbing alcohol.

Good to see you TikkasMom.

My very best wishes to everyone and praying for a Happy and Healthy New Year.

Mominator

BRCA2+, wife, mom to 3 children of various special needs, musician, volunteer, 54 yrs young

TallnTerrific

Mominator, you summed all up well. Thanks for keeping all of us in your prayers. I don't think I knew that your mom was having cancer treatments at the same time you were. That is a great deal to manage especially with all you have on your plate!

katykids

so quiet here. Happy new year. I had mri of shoulders and its moderate adhesive capulitis on both shoulders, rotator cuff tear on left and some weird tendon thing on long head of the biceps on both. I can understand some stuff due to age--i am 45. But I am bummed about it.

Hope you are all well.

Mominator

Hello lovely ladies,

I just got back from my PS and I have a date for my exchange: January 18, 2016. That happens to be MLK, Jr. day, so hubby and the children all have the day off. No worries about getting someone to/from school.

I'm looking forward to getting rid of these TE's and moving forward.

TallnTerrific: I live 300 miles away from my mom, so it's hard to help her. I read all her pathology reports and make lists of questions for my brother who goes with her.

katykids: do you have a treatment plan yet for your shoulders and arms? That sounds so painful. Sending gentle (((HUGS))).

Mominator

Live4them

so glad to see everyone back on the board . Mominator my nipples are still healing 😏 The lefty has no scabs and no openings but looks so ugly and weird , the righty looks better but when dr finally took off scabs it left below a pretty big hole. He said it would take three weeks to close and he's right on track. I see him next week and it's almost there . Can't wait to find out when I can have my revision surgery . Not to happy with these implants , I have a lot of dips and hallow parts . He's going to do some fat graphing and suggested I go a little larger on the implant . I'm not sure I want to go bigger , had big boobs all my life and kinda like this smaller size. Got my oncotype results back from nurse ( I see the oncologist Thursday ) she said it was 11 . I'm hoping and praying for no chemo, I'm scared enough to start Tamoxifen . Scared of side effects and uterine problems , wish I could just take it out lol ... Hope everyone is doing well !

katykids

Mominator, congrats on your exchange date! Not far now!

Live4them, fingers crossed for no chemo! I met with a new PS yesterday. He wants me to wait 2 months for the "dust to settle" before deciding anything on mine. I have more ripples and an implant edge on the bottom that I didn't expect.

I am continuing with PT for all my weird shoulder stuff. She said there might have been underlying issues before the surgery, given I was an avid gym goer. But frozen shoulder isn't as rare as my docs made it sound. I see dr. who ordered the MRIs in 9 days. Don't know if he will call me in sooner given all the injury in and around my shoulders. I can generally tough pain out provided it doesn't go above 8.

Keeping you all in my thoughts.

Live4them

Hi ladies

I'm sitting here in tears .. I feel like BC has taken so much from me and now it's sending me bills !! Have spent the entire day arguing with hospital , insurance and secondary gap insurance .. I'm getting all these bills and I'm so upset because I have no idea how I'm gonna pay them and I'm still not done !! Just knowing PT will cost me every time I go ( when I have no choice ) my co pay is so high $75 per PT visit . The straw that broke the camels back is my insurance not covering the mammogram they did to me after the biopsy because they claim it is a duplicate test !! I didn't ask for a mammogram to check for clip placement ! Especially since now they took my breast with clip and all 😡

Rant over , just took my Xanax

grandma3X

Live4them - most hospitals have financial assistance for patients that are unable to pay all of their bill. The assistance can be in the form of total forgiveness, where you don't owe anything more (for patients who are truly unable to pay), or a reduction in the bill or they may set up a payment plan with easy payments and no interest. You should be able to find this information online at your hospital website or go into the billing office at the hospital and ask about it. My daughter had no insurance but had to use the emergency room recently. Her bill, about $2500, was entirely forgiven even though she worked full-time, because she could show that all of her pay went to living expenses (rent, food, etc).

Also, check with the radiology dept. about the mammogram - they may be able to help you fight with the insurance company to get the second mammo covered.

Good luck!

marijen

Doctors and hospitals are supposed to use the Medicare ABN form if the procedures they do are not covered by Medicare. And if they didn't then the Medicare patient may not be required to pay. I posted the link here somewhere back in November. Search bco.

ChiSandy

Problem is that utilization review staff at insurance companies are often laypeople, trained (if at all) in business or accounting. There is a saying in the law biz that one should think of one's opposing counsel as a genius but the judge as an idiot--meaning that the judge needs to have every fact spelled out and every possible legal argument suggested to him or her. Same with the bean counters: every denial needs to be met with solid medical reasons (backed up by one's doctors) as to why the denial is bullshit. The clip-placement mammo is a textbook case, especially since it is now the universal standard of care.

Mominator

Aw, Live4them, how frustrating about the insurance! Agreeing with Grandma3x's advice. Also adding that I call right away, and often follow-up with an email to protect my rights, as doing those things helps to keep accounts from going to collection. I used to get very frustrated and ask to speak with managers, but I found that never helps as much as being very polite and respectful when dealing with insurance and billing.

katykids: I hope the doctor will help your shoulder get better sooner rather than later.

(((Hugs))) to all my surgery sisters. Hoping everyone is healing.

Love,

Mominator

brithael

Live4them - fight that second mammogram denial. Insurance companies deny first. I have fought insurance companies over the years about denials of treatment for my mother and myself which I knew should be covered. I have always won. Sometimes it can take months, but you can get things done. Don't let them get away with it.

TikkasMom

I went to my Oncologist appointment yesterday and they had a note on my folder stating that they do not take my insurance. I told them that I couldn't afford to pay. They contacted my PCP to see if he'd take over until I find one. He agreed and also found me one he speaks highly of. Then Oncologist came in waiting room (I was last appointment, no one else there) and sat down "unofficially" to say labs were good, no worries and that he'll work with PCP till I find new Doc.

How cool is that, gotta love small town Docs/hospitals.

Natejordlee

Glad to see for the most everyone is fairing well !! Sucks on the insurance issue, being in Canada that is one thing that I haven't had to stress about and It seems unfair to have that on top of everything else. I am sure some of these amazing ladies have great advice for you. Moving on to week 2 of rads tomorrow Wishing you all a fabulous 2016 !!

letsdothis15

Hi all- I'm here and alive! lol Hubby took out my last two drains with a borrowed suture removal kit from a nurse friend! It had been a month. I have had pneumonia and my sweet 94 year old grandmother passed away in the midst of everything which has slowed down progress but TE's are filled to 550 and supposed to go Thursday to Houston to get another 100 cc's or so. I've been catching up on Game of Thrones, though. lol

Live4them- pay $10 a month. They can't do much if you are attempting payback and your insurance is paying a ton I am sure. My insurance covers 80% and I just really don't worry about the rest. I am on a payment plan with my local hospital for the mammo's and biopsy, but MD Anderson is very good about accepting what you can give.

I haven't returned to work- which is fine with me. Still can't drive (driving me crazy) but over-all I feel pretty good. Sorry I disappeared and Mominator- thanks for checking on me.

Through these trials this month, I have decided to cherish family more- even the family that gets on my nerves. Life is precious and I pray you are all healing and soon to be thriving!

Love,

Cindie