March 2014 Surgery

Juliecc

Footballnut, I'm so sorry you have chemo ahead.  I hope it isn't too difficult for you.  Hugs.

Thanks, mnbeck.  I'll hope the incisions look better when the implants go in.

Sleeping with expanders?  I can't sleep on my side because the epander gets painfully pushed towards my midline.   So I sleep on my back.  I still put pillows to my sides to rest my arms on.  I miss side sleeping.

VintageGal1111

Hey FootBallNut

 it is overwhelming at first. I remember the MO & her nurse going over treatment & drugs, telling me my choices, but stressing that I must realize this protocol (similar to yours) would be more than a year of my life. 

 Between all the tests before the lumpectomy & node removal & then all the tests before chemo I was kinda ready for a few hours in the infusion chair, being catered too LOL I had 5 months of chemo but none of the drugs you listed are familiar to me. I started Herceptin with Taxol in Nov, so still continue that post chemo every 3 weeks til Dec.

I do have concerns over the Herceptin & heart damage & more so now that my radiation is right above the heart.

I hope you do ok with chemo. It sure does vary with each of us. I saw some women so sick in the chair the nurses weren't even sure they could administer the drugs. I did fine on chemo day, no issues, lots of energy, But the Nuelasta shot the next day got me bad. And the cumulative SEs like fatigue were awful for me, plus I got anemic. 

Hang in there, we're all here for ya!

linda505

Hey Gramof2boys,

I wear my genie bra almost every night.  I tried without it a couple of nights and although I thought I would be more comfortable - I was not.  Maybe it is all in my head but wearing the bra seems to prevent the poking sensation in my armpits and to my sternum.  I may try again without a bra in a week or so - but I can sort of sleep on my side - not full side - but kind of propped on a pillow side - like a 45 degree angle.  I  sleep much better this way then on my back

sandra4611

Football, all you can do is research to find out how to minimize side effects and then hope they never happen. (Just like we do with every other step in this unwanted journey.) No one wants to take the next step, no matter which one it is, but this horrible disease takes choice away. Don't be afraid of knowledge. Knowledge is power. If you know what to expect and what you can do to help yourself get through it, you have power. Yes, some of the things that could happen are frightening but since you have no choice about entering this battle, you might as well arm yourself with more than fear.

sandra4611

TE's have hard backs and edges. I could always feel mine if I leaned forward while sitting. It raked across those lower ribs - ouch. Some feel them other places - armpit, sternum. I thought the most painful part towards the end was above the TE on my chest. The stretching alternated between itchy and achy. My skin was shiny but even Bio-Oil didn't help the discomfort from the stretching. Lidocaine patches are good. It's not instant relief, but gradually reduces it for about 10-12 hours. You can cut the patches into smaller pieces or even cut a rainbow shape that will fit all across the chest just above the TE. If you've been pregnant, you know how uncomfortable your skin gets at the end when it's been stretched to the max. You have months for your abdomen to very gradually expand during pregnancy. With TE's, it's far from gradual, especially if you have a PS who likes to do big fills.

I think a very small soft pillow is essential to sleeping on your side with either TE's or new implants. Put it between the mattress and the foob. These new things on our chests don't fall to the side like natural breasts so when you are on your side, they pull on skin and interior tissues. A small soft pillow props them up enough so there is no pressure. Also when you are on your side, the top foob has a lot of pressure on it to slip down towards your sternum. Gravity feels bad! I have found that clutching a pillow against my chest works perfectly. I also tuck another of the small soft pillows under the top arm to keep it in place. Otherwise it tends to fall forward, putting pressure on the side of the top foob. Try putting a pillow behind your back to allow your body to lean back just a little too. That will allow you to ease into side sleeping again.

sandra4611

VintageGal1111

I'm finally going to the BC support group tonight. It meets every month but I wasn't up for it when first diagnosed. Then all through winter, being being so chemo'd out & not wanting to travel in winter weather I never went. Do any of you attend support groups?

Frostecat

Footballnut, I am so sorry to hear that you requiring chemo.  I am hoping that you will be one of the fortunate ones that does not have a difficult time with it.  

I am finding this very bittersweet to report, as so many on this board have had to face so many obstacles and/or chemotherapy treatment that my heart sincerely breaks or bursts with jubilation as I read through each and every one of your stories and reports.

I just got back from by BS, we went over my pathology report and she said it all looked pretty good.  And of course waiting to hear the big answer to the chemo question, she said "Years ago, we treated all tumors that were over 1 cm with chemo, now we treat according to how the tumor reacts" (I found out the tumor was 1.5 cm, larger than originally diagnosed, this was due to the multi-focality) "Since your tumor is a low grade slow growing tumor, I don't see where there will be any benefit to your receiving chemo"  WHEW I can not put into words the relief I felt at that moment.  I am however remaining cautiously optimistic, as we are doing the Oncotpe DX and will have the results in a couple of weeks.  I am trying not to get too excited about this, as I have said before, expect the unexpected, and I will hold my breath until the final results are in and I meet with my MO.

I wanted to report my most recent news, as we all follow each others journeys, and thank you all once again for your knowledge, concern and support of each other.

Wynne50

I'm feeling exactly like Frostecat.  So sad when I read of some who are not getting the news they hoped for and are facing chemo.  It makes me almost feel guilty to report my good news.  Just got back from my BS with the final path report. They found no other cancer in the breast tissue or lymph nodes.  He said they must have gotten all the cancer out with the initial biopsy.  Amazing to me.  He is sending me to a MO and said that he couldn't see anyone recommending chemo but I would probably have to take the pills.  I'm so happy about no chemo but the pills worry me because of the SE.  I also just don't get what appears to be a very small increases in recurrence worth the SE.  Time to do some research.

Blessings and hugs to all of you!

sandra4611

Vintage, I've tried a local support group three times but won't be going back. All of the 15-20 women there had their surgeries at least 5 years ago, some 10-15 years ago. No one knows what kind of breast cancer they had and don't understand why it's important to know that. Not one of them is currently going through treatment. One woman is into natural treatments, which is fine for her, but she goes on and on about how spinach can cure cancer, etc. It's a good support group for the women who are in it. They have much in common. But for someone only 7 months into this, they have nothing I need and I have nothing to say.

iwannaseeyoubebrave

Frostecat, Congratulations on the clean pathology report.  That is great news! 

For those of us that have gone back to work,  are you as happy as I am that tomorrow is Friday?!?!  Although I feel stronger every day,  I am beat by 6pm. By the end of the work day I feel like my expanders bumping out to my armpits but then i feel better in the morning.  Weird. 

For any of you that are pre menopausal, have you missed your cycle/period after surgery.  I'm officially two weeks late which is odd since I'm always on time.  I'm for sure not prego. ;-)  I have an appt with oncologist next Tuesday.  We'll see what she says.  Just thought I'd ask.

Kitty62

I belong to a group called The Flying Irish...our motto is "we RUN Spokane." We meet every Thursday and do a different 3(ish) mile run. In my case I've always walked/jogged. Then we eat, drink beer and to get a milestone T-shirt you get up on stage and tell an Irish joke.  My DH doesn't care to do this with me so it is my night to do something just for me. I love my Thurs night get together with my friends. My daughter is going to drive me. Hope I can walk it all. If not no problem will just be nice to see my friends.

I ALSO have a bit of guilt. No chemo. No rads. No hair loss. No skin burns. No nausea. The BMX was/is tough. Can't imagine adding to this journey any more pain. My heart goes out to my fellow sisters that have to go through ALL of this. I am lucky. I am blessed. I'm older and my breasts have done their job. I don't know that I really miss my old ones...to be contd

Footballnut

No one should feel guilty about sharing good news!  We need it!!  I can't wait until I can share good news and despite my up and down emotions right now, I know that I'll get there!!

the hospital called and gave me my appt to have my port inserted. Tuesday April 29 8am. After the procedure I have to get blood work then meet with my oncologist

Then I start chemo the next day at noon

So once I got off the phone with the appt I cried like a baby!!!

I can't believe that they will insert the thing and use it the same day!!

So here I am petrified again!

Then I scrutinized my pathology report and am questioning how I can have a positive outlook if my cancer is triple positive with macro cells in 2 lymph nodes and grade 3. Everything points to aggressive!!!!

So I'm scared all over again!

Arrrrrgh!!!!!!What a roller coaster!!!!

VintageGal1111

Oh Sandra.... I don't know if I will go back. The women were friendly & nice but have all been with each other for years! They eat in the hospital caf before the meeting then just talk about stuff friends chat about,  kids, vacations. work....NOT about breast cancer.

A couple were 10-11 years post treatment the others around 5 years.

I did get a radiation question in & a couple other comments. They said they seldom get a new person & the newbie never comes back.

...sigh...

ucfmom

Footballnut, I'm sorry to hear you will need chemo.  I hope you are one of those who doesn't have much trouble with it. 

SpecialK, you have had more than your share of challenges!  I hope you get though this quickly.

Franny and Frostecat, it's so good to hear the positive news you both received in your path reports.

I'm happy to say I had my last drain removed this morning!  We went straight to Bed Bath and Beyond so I could get a couple Genie bras.  If I like them, I'll be going back for more!  The hooks on the front of my sports bras are starting to rub against my chest and the skin there is sensitive enough without that.  The nurse at the PS said it's ok for me to sleep on my side now.  I wish I'd thought to buy more pillows today, I was at the perfect store for it.

My husband still has me on "restriction" until tomorrow evening - he wants to baby my right arm just a little bit longer.  We will be attending a happy hour tomorrow for a dear friend who just retired from my office, but we probably won't stay too long.  The UCF Spring football game is 2:00 Saturday, so we're planning to go to that as well.  We'll be tailgating starting at 8:00 but I will just be sitting around watching while everyone else loads the cooler, packs the truck, sets up the tent, etc.  It will be different - I'm used to doing all the shopping, food prep, etc.  My son's girlfriend offered to bring the mimosas, so I don't even have to worry about that.

I'll be back at work Monday, working short days for a week or so.

Juliecc

Iwannaseeyoubebrave, I got my period 10 days after surgery like clockwork.  Working since Monday has been completely exhausting.  On Monday and Wednesday I actually went to bed by 7 pm.  I miss my naps.  I started Tamoxifen last Friday so I have no idea if my fatigue is from that or work or just recoverying.  Since Sunday, I've had vertigo when I lay down, sit up, or tilt my head too fast.  I had this a few months ago before BC so I don't know if I can blame the Tamoxifen or not.

Good luck to all of you starting chemo soon.  I can't imagine how you're feeling.  Hugs.

lynnlyre

Hello I guess I'm part of the group.  I found my lump on New Year's day, got my biopsy results on Valentine Day and had my right breast removed a week after my 50th birthday on March 28th.  So far we know that my tumors were sensitive to estrogen and progesterone so I will be doing hormone therapy. No reconstruction was started because my BMI was too high and plastic won't touch me unless I loose 100 pounds. Surgery found no node involvement but 5 tumor in my breast with one greater that 2 cm so I am being diagnosed as stage 2.  I see radiology and oncology next week to discuss what is next.

Still have drain in with no sign of the drainage slowing down.  Pain level is still high enough I need pain meds with makes me mad.  Mostly I think it is because of the drain.  

Right now I'm just depressed, tired, sore, and scarred.  I'm barely holding on to my sanity.  Everyone just want me to go back to normal and there is no normal now. 

Kazzy115

lynnlyre - so sorry you've joined so many of us. I am 10 days ahead of you in my surgery and believe you will feel better with a bit more time.  I actually thought the second week was more difficult than the first.  You found a great group of women that you can use for support.  I had final two drains in for three weeks. Amazing what a boost it is was they were removed.  It seemed there was no slow in sight and then occurred quite quickly.  Sending hugs and healing energy your way. 

Blueberry4

Iwannaseeyoubebrave -I am a few days late now and definitely not prego. I think it's normal.  If I end up weeks late I will call my pcp.

Specialk - I'm so sorry about your set back.  thank you for continuing to share with such grace and honesty.

Lynnlyre - welcome to our group of surgery sisters.  I think it's really hard for people to relate, so they want us to get back to normal quickly.  Cancer is scary stuff and normal is comfortable.  Not to worry though you have found a great group who really understands. The ladies on these boards have so much wisdom and compassion.  Lean on them and share. Before you know it you will be helping someone else. Sandra has assured us that there is a new normal to be found.

Vintage and Sandra - I have had a similar experience trying to connect with a local group.  I have been told that I should have vitamin c infusions instead of chemo and that none of the er/pr her numbers matter. Not too long ago I guess people had no idea what they had. The few I have met are also very suspicious of the medical community. I wonder if that developed before or after BC.

I had a super big day today. I saw the PS in the morning and got the drain out from my debridement surgery last Friday.  I'm finally healing, yay. next week I'll start fills again and hopefully get evened out.  I'm quite lopsided since PS removed saline from the left TE. I had chemo training in the afternoon.  Everyone was super nice except one lady who was there on behalf of her father. She kept laughing about how much our side affects are going to suck. When glared at, she told us she's a nurse and was just telling the truth. So I pretty much hate her now.  Perhaps tomorrow I will feel forgiving. Then I had my echocardiogram to get a baseline before chemo.  Monday is my port placement. Then I meet with the MO Tuesday and get my start date.

Football - have you joined the April chemo thread?  I'm getting good info and support there from people who hAve just started.

Kazzy115

Good evening everyone.   I've got a question , any of you experiencing "cording"?  Noticed last night very severe pain from armpit down toward elbow and a tendon-like cord visible in the armpit and under my upper arm.  Seems PT may be in order which is so discouraging as I'd had nearly full mobility and looked forward to a few doctor free weeks before May 1st chemo start date.   Ugh.

sandra4611

Welcome Lynnlyre,

You bet you're part of this group! Now that we know your name, we'll expect you to chime in whenever the mood strikes. It's a place you can let your feelings out, good or bad.(Sometimes both in the same day!) We understand completely and most of us are feeling the same way, or did recently. This cancer "chit" is just too hard to bear sometimes. You can go along fine for awhile and then, . What you are feeling is completely normal. Take your pain drugs. It's important to stay ahead of pain. There are women who've been on narcotic pain relievers for weeks on this forum. You don't get a gold star for going without. It doesn't mean you are weak if you take them. If you feel like crying, do it. Then pick yourself up and move on because, unfortunately, cancer has taken away choice.

  

mnmbeck

Just want to chime in and say "Hooray" for everyone with good news.  It's so encouraging for everyone to hear.

And, for those of you who are not hearing the news you had hoped for.....I will give "advice" that is hard for me to heed.  Don't let fear consume you.  Talk, cry, talk some more, read, research, whatever empowers you.  Just don't let fear win.  I am working on this myself in life.  Fear is consuming.  We are all here for you.  Everyone REALLY DOES want to hear you, to let you cry on our 'virtual shoulders'.  We all want to support you through this.  Much love....I will be praying for you!!

FrannyM424

Finally had myself feeling brave enough to head to Walmart and pick up my Tamoxifen & what does the pharmacist do? Run right over & start telling me that she recently started on same drug & immediately began suffering "horrible" hot flashes & mood swings.  Sat in my car in parking lot and cried. I just recently started feeling somewhat like my old self again & not sure I can physically & emotionally handle all of a sudden feeling like crap again. And for maybe 5 years??? Julie u mentioned vertigo after only being on it for 2 days. My bottle has the caution stickers warning of dizziness.  How the heck are u supposed to drive, work, etc...? Feeling angry & frustrated right now.  Think I'll just glare at the bottle for a few days.  

linda505

Please keep good news coming!!  I love coming in and seeing good news - good healing photos - don't ever feel guilty - I look forward to be able to share good news too!!

Sailon

Linda 505 -- here is a healing photo -- a little lopsided I think, definitely flat looking and the bandaid marks from my last fill are a special touch -- but none the less a positive healing photo.  I have one more fill (70 more cc)-- and these girls will be at their limit!  Will top out at 440ccs -- my PS says he only likes to overfill by 10% and my TEs are officially 400cc size.  So I am feeling pretty good about my progress, even if only the women here would find this pictures something that looks good! 

Football -- hang in there -- it seems among the many things you are processing right now, the "unknown" surrounding the next step is the toughest part.  I remember that feeling from the month prior to my surgery.  It rendered me fairly flipped out for a month.  Of course now 6 weeks post surgery I look back at the unknown time and realize that the surgery and aftermath, was a little less horrible than I thought it would be, and that the medical community took unbelievable care of me -- and really does know what they are doing -- and am recognizing how lucky we all are that we are going through this now -- not a decade or two ago.   We all have very little perspective -- but we have a little -- try to not let the fear of the unknown drive you under.  I hope this helps a little Football -- Hugs Hugs and more Hugs. 

Sandra -- you are spot on with your post "Most of the things you worry about never happen!"   Try to hang onto this thought Football -- 

Sleeping with TEs -- I am totally on my back - propped up a little sometimes and or flat on my back the rest of the time.  When I venture toward the side -- I feel the darn TE acutely -- and it just is not comfortable.  I think it is fairly anchored in place --so am not so worried about it moving -- just do not find it comfortable.  Still no spooning possible -- bummer.  

I have not ventured into the Group thing.  But I am seeing a counselor -- to keep my head on straight and focus on the right things for me over the next year.  My PS nurse has recruited me to be model in the Marin County Breast Cancer Fashion Show Fundraiser in September.  A formal event (14th year they have done it) with a couple thousand guests - using survivors as models. Since there are so many of us in Marin County you can only be in the show once.  I am a little reluctant, but all say it is life changing etc….. So I am tentatively signed up now as it might be a good way to continue to process all of this -- as I gain perspective on it over the rest of this year.   

linda505

wow Sailon - the new girls look great!!!   Thanks for sharing

EverForward

Kazzy, yes, I experienced cording about 11 days after my lumpectomy/lymph node removal. I didn't do any regular physical therapy, but just did some light stretches and gentle massaging. One technique is to stand facing toward a corner of a room and "tickle" the walls with your fingers moving upward, like a spider crawling up the wall. Go as high as you can, do 10 times. Pretty soon you'll start to regain your range of motion. It was really annoying for a couple weeks, then it subsided. 

Frostecat

Sailon you look great!  As a fellow "spooner" and newlywed I miss that too!

Footballnut

Hi All,

CRAP - I'm crying again as I type this!!!!!! You all
help me so much!!!! The thing that freaks me out the most is the
HER2+. I know that regardless of your diagnosis there is no way to
predict the future. Heck, nobody knows what the next minute or tomorrow
will bring!!! So, here I am - haven't eaten breakfast yet - been at
the computer researching and reading since 7am - oh yes, I did pay a few
bills too! lol

I have been on the chemo thread (I think) and appreciate this being recommended.  Funny how some of us bump into each other on other boards!!  Aren't we the chatty ones!!  lol

I wanted to share my entire regime with you - not
to bore anyone - just to release my anxieties. You have all been so
wonderful to me and I hope to repay the kindness as I don't think that
I've offered much to anyone since joining. I also wanted to let you
all know that you may not hear from me during the time that hubby and I
are away. We go to the chemo class this afternoon, concert tonight
(again - I don't know which I would rather do - chemo or Black Sabbath -
lol!!), then tomorrow morning go to Montreal by train to see my Rangers
play the Canadians (boo). Then Monday, we leave by train to go to NYC
to see my Rangers play the Flyers (boo) in round 1 of the playoffs...
funny thing is my favourite hockey team is the Penguins but I love
NYC!!!! The Rangers are #2!! Then we come home a week Sunday by
train. So PLEASE DON'T WORRY about me as you may not hear from me until
Monday, April 21 once we return. My hubby wants to keep my mind off of
the cancer and occupy my time with other things.

Now - for my details - most of which I've shared before (I think):

My pathology report confirms the following:

- Invasive ductal carcinoma AND Ductal Carcinoma In Situ
-
2 of 21 lymph nodes had macro metastases --> size of largest
metastatic deposit: 1.9cm (that must have been the lump under my arm -
I'm guessing that this means it was pretty full of cancer cells??)
- Tumor size: 2.3cm x 1.3cm x 1.1cm --> single focus of invasive carcinoma
- Grade: 3 (I know that this means aggressive which is what I thought)
Skin invasion: absent
Skeletal muscle: free of cancer

Margins for invasive cancer = Clear 4mm
Margins for DCIS = clear 7mm
This means that the primary tumour was removed

Lymph-Vascular Invasion - Present
I
know that this means that the cancer may have already started to
spread. While it was found in lymph nodes, it may also have started to
spread to other parts of the body - hence chemo. Since the bone and CT
scans were clear, hopefully it was just starting to spread (diagnosed by
Dr Ang)

ER/PGR/HER2 positive

I don't see where the
Oncologist sees this as looking good! He told me that I will have a
long life as it is in the early stage. How? It is grade 3 (which I
know is aggressive), in 2 lymph nodes (macro spread) and triple
positive!!!!!! I think that he is just blowing smoke up my bum!!

So what are the positives of cancer?

- I've met a lot of people and made new friends (such as yourself) with more to come
- I will save $ on hair products!!
- I have re-connected with people, some of whom I haven't heard from in 35+ years!!
- I am learning more about myself
-
This is happening at a good time of year - I won't have to deal with
snow storms and the chemo treatments will be over just in time for the
football season to start!!!!

Other than that, I am sacred to
death! This lady that I chat with shared an article saying that
treatment should start no more than 30 days after surgery to increase
chances of survival. I'm bacb to thinking that I am a dead woman!! I
can't believe that I have been so healthy for so many years and in a
blink of an eye have become so infected!!!

Most of the women that
I have chatted with who have had awesome recoveries are not triple
positives, let alone HER2+. I am doomed!!!!!!

Hopefully all will work out!!

So, my schedule is as follows:
- April 22: Heart test
- April 29: 8am - insert port; bloodwork and meet with Oncologist
- April 30: Noon - Chemo round 1

Meds:
My treatment is referred to as FEC-D. It consists of 6 cycles given on a single day for 21 days.

-
The first 3 cycles = Flourouracil (or Adrucil) + Epirubicin (or
Pharmorubicin) + Cyclophosphamide (or Procytox). The last med includes
tables as well.
- The last 3 cycles = Docetaxel (or Taxotere)

During the above cycle I will also get an injection of Neulasta.

At some point Herceptin will be introduced which will last approx 1 year.

Then I will get Tamoxefin for 5-10 years - if I live that long!!!!!

You
know, I've always believed that things happen for a reason. I realize
that we don't live forever however my fear is not having a good quality
of life. I have always been healthy and even though I now have aches
and pains I've never seen it as a big deal. At times I am strong and
say BRING IT ON, then it gets closer and I fall apart.

I have come
to appreciate each one of you - you continue to be my inspiration and I
am hopeful that I can actually meet many if not all of you once this is
over! ROAD TRIP!!!!!!!!!

linda505

Footballnut -you and I are tooo much alike - this is not good LOL - go back and read what all the triple positive girls said about when their treatments started and how good they are doing - they totally turned my fears around!!! - WE ARE GOING TO DO FINE.  We are extremely lucky to get the benefit of Herceptin - this brings our odds of survival just about even with none HER2+ - the ER and PR positive part is a good thing cause they have drugs that prevent those hormones from growing the cancer and feeding those rogue cells that may or may not be present - and they have little chance of being present after they get hit with the chemo  (I know not medically correct) but you get the point.  Yes it was in 2 of your lymph nodes - that means they were doing what they were supposed to do - beating up the cancer cells.  IT WASN"T IN THE OTHER 19!!! WOO HOO - those 2 nodes are your champions - they took the hit for the team!!!  We are going to go to football games together, hockey games together, baseball games and bars in the future!  You WILL become a Lightning Fan and a BUCS fan - but that may take you 5 years!!   YOU ARE A SURVIVOR ALREADY!!