November 2014 Surgery Sisters

Hi Hummingbird!  I had a double masectomy on 9/26.  So you know, I weight 108 and am 5'7".  I was HER2+, and it had met to my liver with 2 spots.  My left breast was positive and the tumors in my left breast were benign.  The original plan for me was Taxotere, herceptin, perjeta, for 6 cycles every three weeks, followed by herceptin and perjeta for a year.  Followed by double masectomy....why play with fire?  Then radiation, then reconstruction.  Done, go home, have a good life, keep an eye on things.  Well....as we all know, things change. 

I responded to the 6 cycles with a 100% remission...that is great.  I had the double masectomy and the path came back that all the cancer was dead.  What that means is my body responds to the medicine so to keep the HER2 away, I will continue treatment of herceptin and perjeta forever.  Had the liver not responded, which they expected would be the case, then I would not be in a super good position.  I'm finally over the depression of knowing I will be doing this a long time.....at least I get to live!  And easier than some of our soldiers coming back from the middle east.  That's always my bar.  No matter what you feel, someone has a tougher recovery.  You keep that in mind and it will center you and clear your mind of negative feelings and you will heal better!

Surgery is a breeze.  Worst part is getting the IV, which is nothing, in reality.  Once the catheter is out (they put it in when you are under and when they take it out you are still loopy and don't give a damn and don't remember it anyway)  and you go to the bathroom the first time, that is a bit weird because you are a bit woozy.  They will try different pain meds in the hospital to see if you respond so they know what to send you home with. 

Once home, be sure to sleep propped up.  I had four pillows and one on top and slept sitting up with my head a bit forward, this went on a month.  I only slept an hour at a time mostly.  Getting out of bed is a bit difficult, but if you use your stomach muscles, don't use your arms to lift up, you'll be great.  Start practicing that now.  Make your abdoman work for you.

Showering is a bit of a pain in the butt while you have your tubes in.  My surgeon told me, "toss them over your shoulder", yeah, don't do that, if they fall they pull, won't do anything, but will scare you out of your mind.  I have a stand up shower only.  Buy a $5 stool to sit on.  I got super dry from chemo so use TrueBlu from B&BW.  Shampoo or shower gel is best able to use if it is in a pump so if it is on the floor, you can pump it into your hand.  Squeezing was super hard for me.

I had 4 tubes.  The first 2 came out a week after, the others had to stay another week.  The first two, although weird, did not hurt....I am a very squimish person.  The second two were ok, but the last one did hurt....again, I am a very squimish person.....Also being small, I retained fluid from the surgery.  Not everyone is going to do that.  That is what made the one hurt coming out.

I have had five fill ups now of my expanders.  The last one was this morning.  It was the most uncomfortable.  The deal is, I was very small, so if I have to go through all this, I may as well get an upgrade, right!?!?! 

Because my surgery pathology showed that the tumors and tumor bed were all dead, and because my Stage 4 was in the liver, far away, the odds of it coming back in my chest wall are very slim, having a double masectomy.  I do not have to have radiation.  If you have to have radiaion, do not have reconstruction at time of surgery, have expanders installed.

As to what to buy, I would certainly buy three things. 

1.  One of those tv watching pillows fromTarget, $15.

2.  A breast buddy from curedivas, $15.  That is for seat belts.

3.  A masectomy corsett, it holds better than the surgical bra they give you and it was $71. 

All of these are covered by insurance if the surgeon gives you a perscription.

Also, my surgeon gave me two heart shaped pillows that go under your armpits.  GREAT.. Especially later when you want to try to sleep on your side.

The worst part of the whole thing is the drain tubes.  This is 2014 so some of what you read on Susan Komen or cancer society pages are old school.  I did not come home with dressings that needed care, etc.  I did everything myself with no help.  Not that I didn't have help available, I just didn't need physical help.  Sometimes I would get freaked out in the head a bit and needed held. 

My husband worked from home the first week, I had surgery on a Friday.  The main thing about being home alone the second week was he moved things from the second shelf cupboards to the first shelf so I didn't have to reach.

Good luck to you!  Whenever you feel blue....look at the type of cancer you have and what the prognosis was 5 years ago for the same kind and oh I hurt today or whatever, think of our troops coming home to Walter Reed and what we can still do compared to what they have to relearn or have to learn with a prothesis....and most of them are much younger than us.  WE ARE LUCKY!  WE ARE WOMAN!  WE ARE STRONG!

Im over a year out from the bmx and finishing soon with reconstruction surgeries. I started with DCIS and had a lx with lift and matching lift on other side. They found tumors in tissue on both sides so went back for my bmx. A lot of the suggestions above are excellent.

You will have tiny dinosaur arms with limited movement and strength. Dont plan on being able to lift them high up. Put things on the counter, moved your coffee pot closer to the edge, use a plastic travel mug cause its light, etc. I couldnt even pull open the fridge for awhile.

The pillow thing is huge. Have lots of various sizes available and prop your arms up, and have many behind your back. You will basically almost sleep sitting up for a few days at least, and then slowly move back. Side sleeping will be out for maybe a few weeks, but then it will come! I used a very small pillow between my te , so the 'top' one doesnt 'fall' onto the 'lower' one, and that helped when I could side sleep.

I couldnt shower til drains were out. Each dr is different. Get lots of wipes if yours wont let you shower.

Hopefully you have someone to help the first week or two. When you need to get up have them put their arm or hand on your back and push you forward, then you can wiggle your legs and stand...have them help you dress, clean up, etc...

But it all goes by! Just because you can doesnt mean you should!

Thanks again MamaDarrling for agreeing to make this the November 2014 Surgery Sisters thread!

Here's some good information for you and future posters to help prepare for your surgeries:

Check out some good info from the main Breastcancer.org site on Surgery, including:

• What to Expect with Any Surgery
• Lumpectomy: what to expect, side effects, and questions to ask
• Mastectomy: what to expect, side effects, and questions to ask
• Lymph Node Removal: what to expect, side effects, and questions to ask
• Reconstruction: all types of reconstruction, what to expect, side effects, and questions to ask

Also, the Treatment Side Effects section is a great resource for tips to help manage any side effects you may experience.

Also, you may find it helpful to chat with ladies from past months' surgery threads, to get first-hand stories of their experience; see the October 2014 Surgery thread.

Hope this helps and good luck with all of your surgeries!

--Your Mods

Hi everyone,

My double mastectomy is on November 11. Three more days! I have IDC in the left. I will be getting expanders as well as my infusaport during this surgery. Then in 4 weeks I start chemo. It will be 20 weeks of ACTH.

I'm nervous! I'm happy to have this site and support.

Hi there, I am having my surgery (BMX, SNB & DIEP Recon) on December 5th, so I don't think waiting to join the December Surgery Sisters will help keep me going.  I hope no one minds if I join.

This is a sucky journey, but we are all stronger than cancer.  I am 35 and I actually found mine because I was getting a breast reduction, so I get the "free boob job" comment all the time.  People mean well and I try to be gracious and remember that if I had my 1st mammogram at 40, like I was supposed to, I would be facing a very different battle.  I do consider myself lucky because it was found at all.

My goodness, these stories stir my soul. Edukes1002 and mom2threeboys thanks for sharing and for joining us. Everyone has such unique situations but yet so many similarities.

Mom2, I can see why you would feel anxious. That is a hectic and rather nerve racking agenda you have there. Then throw in the holidays, kids, etc...... Yes, you need some support for sure. I am a teacher and just preparing to be gone has my panties in a knot. I tease that teachers should be exempt from cancer because preparing for a long term sub is ridiculous. Every lesson for everyday has to be planned, every copy made.... You get the pic. Bottom line - nobody has time for this but sheesh, you need an exemption - only one cancer and only one focus!

I am having BMX with TE and Implants, also a SNB. I figured the would do a DIEP recon but they are not. Recovery time will be less and that is nice. How did you all decide what procedure you were going to go with? Luckydog42 I remember reading it was healing time for you. The doctor really didn't give me options but I think I am having what is best for me.

I am surprised at how young many of you are. I turned 40 in July and hence the birthday mammogram. I have a friend battling stage three BC and she challenged her friends to be screened. Because it was my time and I wanted to be supportive, I made the appt. I was told it was normal to get a letter for a second screening and not to be worried should that happen. Okay, got the letter and didn't worry much. At the second appt I smiled and told the tech no worries here. I remembered what you told me. Then the 'look' happened! That led to a needle core biopsy and my diagnosis. So on Sept 3, I was told of the DCIS and here I am. Since then I have had a scare on the opposite side and a ultrasound guided biopsy. All is good except I think the clip they placed fell out of its site and now I have a bump that doesn't belong. No worries... The doc said the boob is coming off so we will just leave it. (They are just so funny, aren't they.)

Keep you stories coming. I feels wonderful to have a safe place to be with people who know what this feels like. Happy Sunday

Thanks for the welcome, ladies. I'm glad to be here for the support and to gain so much knowledge from those who have walked this path before us! Awest, you are right, need an exemption for teachers :-) With our youngest now in college we think most teachers juggle so much work already and I can't imagine adding cancer and recovery to the mix. Hummingbird, thanks for the suggestion about a jacket with inside pockets. And TJG2, I'm heading to Target this morning to get a study pillow to help position me in bed.

I am probably older than many of you (58) and had my first mammo 3 years ago - totally normal but noted for dense breasts. 2nd mammo last year noted an area of concern on my right breast which after diagnostic mammo was only a surgical scar (previous open heart surgery to repair a congential defect that wasn't found until I was 55 - go figure?). This year's mammo noted an area of concern on the opposite breast. I had lost quite a bit of weight over the last year and thought it was perhaps just folding of my breast tissue. Like you, Awest, was confident it was not anything to worry about but went back for the diagnostic mammo. Knew I had trouble brewing as soon as my preventative cancer doc (who does all my annual screenings) showed me her PC screen with my mammo displayed, Last yrs. mammo showed 3 scattered microcalcifications in L breast, but on the new mammo I saw hundreds of little pinpoint sized calcifications lined up like soldiers in my milk ducts. Knew at that point what it was, although not official until after core needle biopsy samples (3 out of 6 positive for DCIS grade 3). Was most surprised by the fact I had gone from 3 scattered microcalcs to a large mass of them (3.6 x 3.6 x 1.2 cm) in just one year.

At MD Anderson you can either meet single file with separate appts for each provider (breast surgeon, medical oncology and radiation oncology) or you can choose a team approach in a single clinic appointment. I did that and loved it as it was much quicker and gave me "one stop shopping" in terms of all my questions. In one day, met individually in one office with each of them, they all conferenced as to the best approach and then all met with me again as a group to chart our course. While waiting, social work stopped by to explain their services and to introduce me to other services such as their Integrative Medicine department. It was very comforting to me to go from having so many questions to having a plan to address them in just 3-4 hours.

Although I was a good candidate for a lumpectomy, it would have been quite disfiguring and would require some reconstruction. I had 3 cousins with and in their cases they wished they had done MX instead. So, I considered that along with the fact that my latest mammo showed some scattered microcalcs in the nonDCIS breast, just like my mammo on the DCIS breast had shown a year ago. My onco team all laughed when I said to cut these puppies off and send me to the build-a-breast workshop for some new ones. Of course, it is a long road and they will never be the same, but for me it is definitely the right course.

I dealt with the waiting by making several road trips to visit our sons at college (1300 miles round trip...haha). It kept my mind off of the cancer and waiting game and brought a little control back to my life. I'm also seen by Integrative Medicine and they have several resources (most are no charge or covered by insurance) to reduce anxiety and promote healthy lifestyles before, during and after cancer treatment.

Thanks for being here, "sisters"!

Hi! Yay! A group for nov surgeries. I had my umx last tues with TE and ALND. My lumpectomy back in oct had bad margins and showed 3/4 sentinel lymphs involved.

My second surgery went well but took a long time. Pain is manageable. But the drains are annoying. 2 things I found are drain holders on amazon and wonderful fleece lined zip up sweaters that have inside pockets at Eddie Bauer outlet. I live in these!! The pockets are awesome to plop the drains in.

My stats aren't up yet cause I get my final pathology tomorrow. I'm nervous about it. Right now what I know is

2.4cm IDC with extensive dcis. I had 3/4 lymph nodes with 5mm mets one with extra modular extension. I also have extensive LVI which scares the crap out of me.

I am a 42 year old mom to 4 boys ages 2-12.

I plan on having my good side taken during recon.

Looking forward to having a group to fight this with.

Nursie- not going to pretend I really know the answer to your question but I read on a surgery site that a period will not change surgery. They said no problem, a nurse will change your pad during surgery if need be. So much for privacy, right?

Welcome Jovigal. I wish I knew more about what all the codes and diagnosis mean that you and others have posted. It worries me that I don't know much even though I've been reading up for a couple months. Best wishes on your path report tomorrow. I am glad you here to tell us what we need and what to expect.

Best of luck on your surgery tomorrow, Nursie!

Hi November sisters! I'm scheduled to have my MX on November 20th. It was supposed to be in October but I got really sick 2 days before surgery ended up with walking pneumonia so now I'm a November gal. I had IDC stage 2 node negative 18 years ago with TRAM reconstruction and chemo. This June (!) I found out I'm BRCA2+ and also came back with a suspicious mammogram, which led to an inconclusive ultrasound which led to a bilateral MRI which showed that the original area of concern was just cysts BUT found another area of enhancement with a BIRADS of 3. So, since I have the BRCA we decided I will skip the biopsy and have the MX and SNB with TE and a BSO (ovaries out) as well. Praying that my pathology comes back negative, I really, really don't want to do chemo again!!! I'm bummed that I'm going into surgery after being sick, I've always been in pretty good shape before, so going in after being in bed for three weeks has me a little worried... But it's got to be done! Dealing with this since June I'm very worried that if something IS there, it's had too much time to grow... Think good thoughts...

Yes I had mastectomy on left breast years ago and now I have an suspicious area in right breast but also just found out I have the breast cancer gene so am having right side mastectomy and sn biopsy... Once I know what I'm dealing with as far as breast cancer i will have to check for melanoma and colon cancer... Won't be a dull moment around here for quite a while.

Thanks. I only took the brca genetest because a family friend who is an obgyn insisted I do... I was SHOCKED beyond belief when it came back positive... No family history that I know of...

Awest.  That's the way to look at this.  I keep telling myself that 3 weeks from today, God willing all goes well, I will be cancer free.  So done with this stressing.  Hoping the pathology comes back the way they think it will and that I have no complications....just power through the surgery and focus on recovering.

How is everybody doing? Tues. will be 2 weeks since my mastectomy and ALND. I can finally reach my arm over my head! Like everyone has said the mx was the easiest to recover from. It's the ALND that's a PAIN! The TE are uncomfortable and odd feeling but not at all painful for me. I already had one drain pulled and I'm hoping the 2nd will go on Tues. Which is also when I have surgery AGAIN for my port placement. Lots of people ask about showering and driving. I started driving 1 week after sx (single mx) and full showers about 9 days after. Full shower felt wonderful!!

Again, I have to say best advice for me was the inside pockets. I've lived in my 3 sweaters that have those.