February 2012 MX

vicky3blum

Hi. I just found out that my surgery for my MX and lymph node testing is in the morning of the 27th. I am so nervous but so glad that finally something is going to be happening soon.  I'm worried about my youngest son [18, i am an old mom, 57] because he  has horrible neurological problems that cause[among other things] excruciating pain[he has passed out hundred of times in one day during his worst periods]  he was doing much better but with worrying about me[ and the fact that we are about to lose our house and move to a camper where he will be far from his one friend]  I'm so worried about him.  Actually, I'm just plain scared about all of this.And depressed.

barbiecorn

Nel - I am so sorry about your ex - I cannot understand how bad sometimes this timing is - Listen, seriously - I am two weeks out of BMX on Weds. and the waiting was the worse part.  You will be fine and if you are fine, so will your children be fine.  Big hugs and prayers to you.....

barbiecorn

Vicky - my prayers are with you and your son!!!! Once the surgery is over, you will feel so much better.  The waiting is the worse. 

cajmi

Nel,

I'm so sorry that you have all this added stress right now!!  It really is so much better when it's done.  Do you have xanax that you can take?  It does help!!!

Maybe it will be a blessing to have your brother-in-law there.  You will be in my thoughts and prayers!!

Vicky,

I'm also sorry to hear about your difficulties.  It is a good feeling to get a date cuz then you feel as if you're doing something.

There is a site online that helps coordinate care, meals,rides and shares information with the people you enter in to it.  If this is helpful the site is lotsahelpinghands.org.  It is free and we used it for my surgery as my husband hates to talk on the phone.  If you have people who are willing to help, it is a great way to coordinate it!!! 

I'll keep you in my prayers,

Carolyn

mma59

Waiting is definitely the worst part!  I also never used anything that I packed.  Discharged the next day.  7 days and now I am taking 2 500 mg tylenol.  still uncomfortable but not really pain.  My surgeon also expected my nodes to be fine but one out of the four she took had cancer so now I go back next tuesday for out patient surgery to remove more nodes.  Which of course means another drain!  Got one of my two drains removed today.  Did not hurt just felt weird.  The best part of today was that i got to see my roommate from surgery at the PS!  Only spent 24 hours with her but we will always have a special bond.  My husband has also been amazing!  You girls waiting try not to worry.  You will be home and on the road to recovery before you know it!

Deborah2012

Hello All,

Okay Roster report:

Waiting to hear from Pelican Girl, Sadie524, Likeachickadee, elliegk, dragonfly, Galsal, winnie thepooh.  Hope all went well with Lynnbrooks1, Layla2525 and good wishes to Lydia1961 for tomorrow- our lone VD surgery pal.

 So glad to hear Rose_d post! Whew.

Had one drain removed today (2-3-12 was surgery).  No pain- and fast. One drain to go.  PS was "amazed" at rate of recovery- TE condition, and range of arm motion.  That made me feel really good. HIghlight of my day.

Happy Valentine's Day to all! 

Deborah2012

Ddeal14

Hi ladies, I will be joining you. My bmx and immidiate te is on march 14. I am scared to my bones. Today, I received the pre surgery tests. Lymphatic scan. I called my bs to ask about it, the injection...I am terrified. Crying and sobing all morning. I have been reading in this site for a week or so now, today is the 1st time I post...I felt so desperate. I am 41 ys, I have 2 small children and diag. DCIS stage 0, grade 2 in left breast, I decided to take the other 1 too, so i don't have to go through this nightmare again anytime soon. I am needle freak, don't realy stress about the surgery and recovery (I know there is going to be pain in there), but the poking needle in my aerola is freaking me out, any of you feel this way? Miri. Can anyone who had the surgery tell me about that pre surgery test?

mma59

Ddeal14, I had my MX on 2/6/12 and the injection feels like a sting but as fast as you feel the sting, a few seconds later it's over.  Don't worry!

november

Good luck to everyone going for surgery this week; you will do fine

Ddeal14

Thank you so much mma!

Ddeal14

Thank you so much mma! And good luck to everyone, I keep you all in my thoughts!

mcm24

I am 8 days post-op and things are improving.  Like my "roomie" mma59, who I instantly bonded with, I too had one drain removed yesterday. I was very nervous about it, but the doctor talked me through the whole thing and I didn't even know she had already taken it out! And then I got to go reassure my friend in the waiting room that it would be a piece of cake!  I slept in my bed last night and did very well. I still have to have my hubby lift my head and shoulders up in the morning to get up and I am very tight in the chest in the morning. I got scolded yesterday for not doing my exercises as much as I should and adapting a bad posture of rounding in. So I must work on that.  One piece of advise for those of you about to go through this. If you have a lot of people offering to bring meals or help out in some way, ask a close friend to be your meal organizer. Then you can refer people to call her when they want to get on the calendar for bringing a meal. Your friend can organize it so that you don't get repeat meals and more than one meal in one day. I ended up with 4 pans of lasagna! I appreciate anything that anyone brought, but if I had had someone to organize all that it would have eliminated the repeat meals.

To Ddeal14, somehow I escaped having to be awake for the needle through the nipple ordeal. My doctor had said that sometimes you are under when it is done, and sometimes not. I stressed to her how done with needles I was and that I really wanted to be under when they did that. So apparently I was under or heavily sedated, because I do not remember any of it. I too took my non-cancerous left breast off because I could not envision a lifetime of biopsies on that breast, and I wanted to deal with all of the surgery at once and be done with it. It was an agonizing decision but I do not regret it. Good luck to all that are awaiting their surgery date. It will all soon be over and on to the next steps. Like mma59, I have it in my lymph nodes, too, when they didn't think it was. So I will be seeing an oncologist and radiology oncologist soon. Thanks to all of you for sharing your stories. This is the best support group!

rachelvk

I just thought I'd jump in and wish everyone good luck with their surgeries and recovery. I had a bmx in October and am about halfway through chemo now. You can get through this. One major recommendation - if your surgeon hasn't already arranged for some type of physical therapy, please ask for it. It makes such a difference when you have someone encouraging you to move and showing you the types of stretches you're allowed to do to help you regain your strength and mobility, as opposed to having the doctors just tell you "Don't lift more than a gallon of milk." Also, my PT works a lot with cancer patients, and he was great at motivation, and also one more person checking up on my TEs and making sure everything was healing correctly. All the best!

BeyondMe

MCM24 / Ddeal14 - I am 10 days post Mx and each day gets better, have to agree with most of the post that waiting is the worst experience, having family and friends pre/post ops does helps too.

I am now waiting to meet BS to discuss my final pathology report and treatment plan including hormonal therapy. I am DCIS/IDC <2.5mm and LN negative. Have you been advised to take Tamoxifen by your physician as I am just concern with side effects and all...like to hear anyone out there thoughts on this post ops and moving to treatment plans...

 Wishing all speedy recovery and those waiting best of luck in your upcoming surgery. 

cajmi

Hi Ddeal,

I didn't have the lymphatic scan, however I had just about the same diagnosis as you have.

I had my BMX on FEB 1 and it was so much better than what I expected.  I did have immediate reconstruction with the old school pedicle tram.  I've had very little pain, and what I've had has been from the ABD donor site.  Maybe you can get some imput from the gals with TE, as it sounds like they can sometimes be uncomfortable.  I just wanted to reassure you that at least for me, the waiting was the worst part!!!

Feel free to send me a personal message or ask any questions.  I'lll keep you in my thoughts and prayers!!

Maybe they would give you some xanax or something like it for the lymphatic test.

Take care,

Carolyn

Dixiemine30

Good luck to all my February sisters this week!!

Waiting really is the hardest part......

wrsmith2x

Had my preop and CT Angiogram yesterday to look at my DIEP flap viens/arteries and doc says they look good.  In fact he may be able to do a SIEA instead.  It was funny...he said, "They look so good, I'm excited to get in there and do my work!"  LOL.  Funny.

Anyway, I go between wanting to throw up and being so ready I want it done today.  But the pain has made me really want the girls gone.  I am mostly ready for Thursday AM to get here soon.  I wish all you ladies Good Lick with your surgeries.  See you on the other side!

Namaste'.

Ddeal14

Dear Carolyn, thank you so much (I would send you a private message, if I only knew how). I am so consfused, my bs office told me that its standard procedure to take out LN (dont even know how many) in ANY case of mx. But yours were not removed, so why r they saying that? Just so confused. I am happy you r feeling great (it gives me a lot of hope). I wanted the same type of recon. that you had, but my ps is against it...why? I have an appointment with him on the 28th, so I will look further in to that. Who needs another surgery for the exchange? And already told him I won't have filling, so what ever he puts in the surgery, that what I will have (even if it's a cup a. I love hearing that you are doing well and thank you so much again for replying to my post, it helps so much.

vicky3blum

I hear so many women who are worried about losing their hair if they need chemo.  i won't know if i i'll need it until after surgery.  maybe if i do then the thought of losing my hair might botherme but right now all i can think about is what they will find with the lymph nodes.  it might be a little different for me though.  My SIL was telling me that they can make wigs that look identical to your own hair.  I asked her why i would possibly do that because i could just glue gun straw to a cap and it would resemble my hair. lol i don't know why i'm posting something so stupid.  I'm just so scared and rambly.[but my hair really does look like straw]

mcm24

I got calls from both a radiology oncologist's and an oncologist's office to schedule appts. today. I thought I would see the oncologist first to set up a treatment plan. I was under the impression that if they took all of the breast tissue and got a good margin, that I would not need radiation. I did understand that if they found it in my lymph nodes that I would need chemo. So  I am not sure why I am seeing the radiology oncologist first, before the oncologist. I also thought that they sent all the tissue to a special lab in California and all of the treatment would be determined by what they found there. I am anxious to see my BS next week and get some answers.

I would have to say that the two worst things right now are the TE's and the drains. Ok, I need a nap!

mma59

mcm24, I thought we wouldn't need radiation either but I guess it's because of the lymph nodes now cause Dr. B mentioned something about that to me too!  She said what she finds during my next surgery will determine my course of treatment, i.e. radiation and/or chemo!  What are we going to do?  We don't have many options!

Deborah2012

Hello Beyondme,

Our surgeries and diagnoses seem very similar.Rt.MX 2-3-12, IDC grade 3 1.3cm ER+PR+Her2-(4 o'clock position); DCIS grade 1 ER-PR+Her2-(yes, different from IDC- 11 o'clock position).

My final post MX pathology report came back negative for all three nodes taken. I meet with oncologist this Thursday.  Pre-op, my onc said she anticipated my nodes would come back negative (they did) and thought it likely I would escape both chemo and radiation.  Hormone blockers would be discussed.   I am sooo relying on her not altering her pre MX results with post MX pathology data.

Please post what your onc says as we have similar dx.

thanks.

Deborah2012

 BTW, I have a TE and one drain left.

Alicethecat

Hello Ddeal14

I appreciate your fear of needles but my experience is, if you don't watch injections going in they don't hurt.

The worst part of having a mastectomy is waiting for the operation to take place.

Have a look at my posts from last week. You'll see that I did not need any painkillers immediately afterwards and had no drain. I have only taken one painkiller since leaving hospital last week and that was because of slight bruising.

I salute anyone who has gone through childbirth. That seemed too scary to me!

With every good wish

Alice the Cat

farmerlucy

Katie P - tell me about areola sparing! I just now heard about it. That is an exciting possibility. Did ur doc say anything about increased risk if you leave the areola or is it just skin?

Pelicangirl

pelicangirlSpeechpro reporting in finally. I have had a rough time of it. I was in hospital 6 days due to complications from a respiratory infection. Also ended up having DIEP on left as planned but surgeon had to do a Tram flap om right ( my cancer side )due to complications from a hematoma from a green filter put in week before related to my clotting condition. Care in the hospital was BAD...we had to hire sitters to stay with me at night bc my husband was hospitalized for complications related to his own cancer and we couldn't trust hospital staff to look after me. I am finally improving now that I am home. More bad news yesterday when I found out I have a malignancy in one of the sentinel nodes in the right side. I now have another surgery at end of feb to remove that tumor and biopsy all the ancillary nodes. Then about two weeks after that yet another procedure to remove the filter in my vena cava and simultaneously put in port for chemo. Looks like I am in for a long road ahead.



Here are some tips for those with surgeries coming up.

1. Demand anti anxiety meds before and after if you are the least bit claustrophobic. I talked this over at length with my surgeons before surgery yet still ran into an asshole of a nurse in ICU who scoffed at me when I panicked due to the tight girdle. Only after I hyperventilated and my Oxygen stats went down did she take it seriously and call the doctor who prescribed Valium every 6hours.

2. Be aware how much discrimination there still is against plus size women. I am 5'8" and about a size 18/20 or 22/24 depending on the style of clothing. My pre surgical bra size was 46C. I provided all of this info before surgery. The girdle they put me in for my tummy incision was so tight I turned black and blue with bruises around my waist and couldn't breathe. I begged fior a larger size and was told "that was the biggest they had." Same with the bra. The largest band size they had was a 42. I still have bleeding and oozing on my sides and under the new breasts from the overly tight band. I know I am not petite but can it really be possible that they have never treated a patient as large as me if not larger? My best friend who is close to 300 lbs had a DMX 2 years ago at a different hospital and they had no problem finding post surgical support garments for her.since getting home I had a friend get a Spanx girdle for me at Lane Bryant and have ordered some sports bras from Hanes Her Way and Woman Within that hook in the front and those will have to do. Still talk to your plastic surgeon if you are any size larger than 10 if you want to troubleshoot this ahead of time.

3.in addition to researching your plastic surgeon carefully, be sure to research the hospital he works out of carefully. My breast surgeon works out of a highly reputable institution but the PS works out of a nearby satellite clinic. Bc the PS's portion of the surgery was longer he got to pick which facility the procedure took place in. Th service at this satellite clinic was subpar in every way. I dread going back but it would be very difficult to switch surgeons midstream (fominstance' the PS needs to be on hand for my lymph node removal even though the BS will be performing that procedure bc PS knows wherenhe installed all the blood flow for the new breast).



hope these tips are helpful and that not everyone has had as rough a time as I have had. Finding out I needed more surgery has been tough. But we don't get much choices with this disease do we? Just gotta take it one step at a time. I am getting a little stronger everyday and will keep fighting this thing with all I have got! Will let you all know how the malignant node and axillary node removal goes ..tentatively scheduled for feb 27

Katiep1388

Farmer lucy- So basically the areola is more like skin, and the nipple is like the tree trunk all the ducts connect to, so if you still remove the nipple but keep the areola (assuming theyre very large like mine) then you can reconstruct the nipple from the areola skin and the cosmetic outcome is incredibly realistic! There was a study done in skin sparing MX where the whole nipple areola complex was removed and tested and less than 1% of the hundreds had desease in the areola, which is why they began sparing them.



I dont think theyre very common because you need a fairly large areola to be able to remove the. Nipple and then have enough areola to later recreate a newe nipple and still have areola left... But its a great option definitely

farmerlucy

That is exciting! I don't want to get my hopes up, but so glad I heard about it b4 next week! Thanks so much!

farmerlucy

Pelican girl, sorry you've had such rough time. I don't know why life has to be so hard sometimes. Praying the coming days are much easier for you. Also, thanks for the great tips.

Deborah2012

Dear Pelican Girl,

What a horror story you've lived through.  So much trauma to your poor mind, body, and soul.  I can't even imagine enduring what you've gone through!  I was worried that you hadn't posted.  Thank you for doing so.  Take care of yourself. Post only when you're up to it. We won't forget about you.  I'm keeping a list of those who haven't posted yet.  We're all in this together.

Here's my question: Do any of your physicians think that you might just have to let your body HEAL maybe even a tiny bit before they start doing the next "treatment" on you?  

I completely get your claustraphobia episode.  It'd be my nightmare.  I had one bad episode in the MRI tube and it was totally unexpected.  I truly have empathy for your feeling constricted in a garment and the panic of feeling confined.  

Thank you for sharing details regarding the health coverage & surgical facilities etc., too. Consideration for larger women were thoughtful, too.

I'm glad I didn't have to endure what you just have.  You have a great attitude. Frankly, I'd be mad that on top of the blasted cancer, all this other stuff happened too. Take it easy, girl!

Please go overboard on surgical gloves and individually packaged alcohol wipes when you have to clean drains and dressings.  When I questioned my PS about the infection rates, I recall him mentioning that for some reason larger women tended to have a higher infection rate with drains etc. 

Sending good will your way.

Deborah2012 

susanes

Hi everyone... I guess it's about time I posted; I've been reading long enough. My BMX with expanders will be Feb. 28. I have never really had surgery before, so all the personal stories here have been very helpful! I am collecting the things I think I'll need while I recuperate, but what I really need to know is: what exactly will I be able to do for myself when I get home from the hospital?? Brush my teeth? Get out of bed? Dress myself? Go to the bathroom?? As you see, I really am at a loss. I know everyone recovers differently, but it would help so much to be prepared!