August 2010 Mastectomy

Nbb1032

August 2010 Mastectomy

Nbb1032

Welcome Anne068,

I see you were just diagnosed in July!  Wow, that was fast.  Because you are Grade 3 (like me),did they not do ultrasounds, pet scans and breast MRI?  That is what delayed my surgery. In any case, I'm glad you got in so quickly - less time to worry about everything.

Just had all my pre -op stuff done yesterday and except for the breast cancer I seem to be pretty healthy.  I asked for a prescription of 4% Lidocaine to put on my breast before the Sentinel Node Tracer shot (which I get the day before on Aug 3rd).  Luckily, Johns Hopkins puts lidocaine in the shot also.  All the posts here say it is very painful.   Just a little tip for all you August people.

Keep signing up and we will get through this together! .

KorynH

A little tip someone gave me that was helpful. Take a lanyard or a couple of shoes strings and a safety pin to hospital with you. That way you can pin your bulbs from the drains to something under your clothes and they won't be hanging down.  Makes showering easier too.  Also, my friend Cherie makes shirts for mastectomy patients and sells them at www.HealInComfort.com These are very helpful in making it easy to get clothes on and off, velcroes down the center front and super soft and comfy. Biggest piece of advice I'd wished I had (and didn't get) was to do the physical therapy exercises from the start (as soon as pain is manageable). It would have spared me months of painful tendonitis on my arm where nodes were removed....would have given me range of motion it took me a long time to get back...best of luck to you all!

Carlatap

Hi Nbb, Ann, and Koryn, I'm having a double mastectomy August 11, with a TRAM flap reconstruction. My sister had the exact same surgery done a month ago. Watching her go through the first few weeks have been difficult b/c of some set backs. We both have the same ps and I'm having mine done in the same hospital. But both of us feel that its the best thing for us b/c of our BRCA+2 status. I've gone through the breast cancer journey twice already, and she has gone through it 4 years ago. I'm glad we both live in the same city so we can be there for eachother. I'm hoping for the best for you too!

Carla

Nbb1032

Thank you Koryn H for all your great tips and for taking the time to educate us "newbies".  We really appreciate it.   Did you go somewhere for physical therapy or did you do your excercises at home?

 Welcome Carlatap.  I'm sorry that you and your sister are going through this at exactly the same time.  My sister had her BMX last summer so I also have some experience watching someone go through this horrible process.  I am also using the same BS and PS as my sister.   Good luck with your flap procedure.  I wanted to get a DIEP flap but couldn't get on the schedule quickly enough.   Keep us posted.

RobinLM

Hi Ladies,

I have been waiting for a couple of months to get a date for BMx with immediate reconstruction with implants, and have been posting on june and july in vain hope.  Finally I have a provisional one - 31st August! Not completely confirmed yet - but I'm hopeful

Thanks for the link Koryn, I have been told absolutely nothing yet about the Op, how I'll be afterwards etc....

Robin

Anne068

Yes, they've done two ultrasounds, mammograms, and an MRI. No pet scan. I have another mammogram and ultrasound on July 28th.  The BMx and a "Sentinal Node Biopsy" are to be done on August 10th.

I think its happening sooner because I wanted it to!! They are *concerned* about the mass in my left, and on the right, they only know that the margins were "dirty". I opted to wait for the reconstruction, as it would have delayed the procedure. My number one concern is getting rid of the cancer.

I can worry about a new set of ta-ta's later.

Besides, I havent heard good things about the only one PS who does DIEPs in Cleveland. So I will most likely be traveling for that.. to somewhere else. I have no idea where!

 One thing at a time, I suppose.

 I'm trying to get stuff done around the house, and prepare for the surgery... my pre-op is on the 28h of July.

Nbb1032

Welcome RobinLM!  Sorry you are having to wait so long for your operation.  The waiting is very hard I know and sometimes you just want to get it over with.  I hope you won't have to move over to the Sept page!  Let us know when the 31st is confirmed.

Anne068, I couldn't get on the schedule fast enough for the immediate DIEP either so have "settled" for the TE w/implants.  My PS said I could still have the DIEP later and that he almost always puts the expanders in first anyway(two stage recon) instead of doing the immediate DIEP but of course that means another surgery.  There are so many decisions to make.  We can only hope we are making the right ones.   I have gone back and forth so many times as I'm sure you have.   We will get through this!  

Anne068

That was going to be one of my questions.... If I could do TE with DIEP, or only with implants.

Also, can I do the TE later? Or did I  miss the boat, because I'm not having it done at the tme of my BMX?

Sooo many questions, and not enough answers.  I wont know my stage unil after the surgery. Then they will be able to tell me if lymphnodes are involved, and if so.... then I don't know? More tests to determine if the cancer has spread beyond that I  suppose. 

 I have no idea if I am making the right decisions, I just feel like everything is happening so fast, and my world has been turned upside down. As I'm sure everyone does.

Until two weeks ago, alll  I knew about BC was that they wear pink ribbons, and walk. Now, I know more than I ever wanted to, and still, not enough.

Yes, we will make it thru this.  We must remain positive.

 It helps to have a support group. 

Nbb1032

Anne,

 You can do TE's later but you might want to at least ask if your BS needs to  do a "skin-sparing" mastectomy, if you plan on being reconstructed. (not sure about that).  Try going to www.breastreconstruction.org .  It was very informative for me and might answer some of your questions.   Let us both hope that our SNB shows zero cancer so we both remain a Stage I..  

 I have had since middle of May to digest all this information - If you were diagnosed only beginning of July, I can understand that the world must be spinning for you right now.     If there is cancer in both breasts and you are a Grade 3, you are probably making the right decision.  Get it out of there! 

My big fear is that I will be needing chemo and will be stuck with the horrible TE's in my chest for 6 months or more before I can have an exchange.  So, there are so many things to take into account and so many factors influencing our decisions.  We can only do the best we can with the information we have a the time.  That is what is good about these discussion boards - we can learn so much.   Hang in there!

Nbb1032

Greetings! 

Wow!  It's almost the end of July and we only have 4 signed in for August mastectomys.  Are all the BS and PS's on vacation this month?  I wonder.   If you are out there just reading posts and want to join our little support group, now is the time.

Also, any end of July people who want to move over to August let me know.

Have a great weekend everyone!   (I only have 10 days left and I have so much to do!)

RobinLM

Nbb - thanks for adding me to the list! Its really cheered me up seeing my name 'in print'!! Looks like a real apppointment!! I hope it's one I get to keep.

Hope you are all having a great weekend 

Robin

taranebraska

Hi all -- I'm scheduled for BMX on Aug. 10, same day as Anne.  I am not doing reconstruction -- I am not a candidate for some options due to being a Hodgkins disease survivor (1997) and radiated on my chest and abdomen. 

I had a lumpectomy August 2009, but should have removed my breasts then.  New spots on mammo in June, finally got an MRI - and I've had it.  I'm hoping to talk to my BS again and make sure he's on board with giving me good scars.  I told him I didn't want reconstruction, I was hoping to pick out some great tattoos instead.  He laughed.  I talked with the PS and he seems convinced that I can always add breasts later.  I'll spend this week confirming I'll get good scars (gees, some of the pictures are nasty!) and that if after a couple years I really need my tatas back, I can get them.

I'm so glad you all are here - and we can stay in touch as we approach surgery and recover.

Nbb1032

Welcome Taranebraska!

I am so sorry that you are having to go through this again a year later!  And I'm glad you beat the Hodgkins Disease - Wow!  You have been through a lot already.  We will support you any way we can - maybe we can help you pick out tatoos! 

May I assume you are from Nebraska so I can add it to my list?

Again, welcome and sorry you have to join our little club.  

taranebraska

yes, please add me to the list, I'm in Omaha Nebraska

RobinLM

Nbb, I took myself off to the private BS in Edinburgh (2 hr drive)yesterday, he can do my Op on 24th Aug.... don't change me yet though, waiting to hear if the 31st is firmed up. It has cheered me up a bit to have a back up plan

Carla, so sorry to hear that you and your sister are affected by the BRA gene..... you are being proactive and taking control which has to be the way to go.

Robin

Nbb1032

Robin- Hope you have some luck in getting your operation moved up.  Which BS will you feel the most confortable with?

Well, girls it is only one week until my BMX and I am starting to get a little freaked out.  The whole thing seems a little surreal.   The only reminder that I have cancer is the soreness in my armpit where they did the auxillary node biopsy (negative).   I am rethinking whether I should have them do an ALND if they find cancer in the SNB.  There are still so many decisions coming my way.  I am only ER 15% positve and a grade 3 so most likely will be doing chemo anyway.  I wake up nights trying to make a decision - I would hate to have chronic pain the rest of my life.

Carlatap

Yes, I'm starting to get a little freaked out too. There are a billion things on my mind concerning people and activities outside of this surgery that I feel need to be taken care of before the surgery happens and I'm down for about 6 weeks or so. Its worse than trying to get ready to go on vacation and leaving everything behind set in place in my absence. My sister has been able to give me an idea of stuff I will need in the house, like nonstick gauze, tape, extra wash cloths, exra bath towles, big button down blouses, and elastice waist large shorts and pants to wear while recuperating. Our upstairs bathroom is getting a make over b/c the bathtub and shower was no longer functional, and its taking longer than we thought.... All this other stuff, along with thinking about what this surgery means in my life can get a bit overwhelming. I just keep praying for peace, wisdom, patience, and a certain amount  of humor as I prepare for August 11.

I am also thinking of all of you who are not only going through the surgery but also processing the cancer diagnosis and what treatments are best for you right now.

Be strong,

Carla

RobinLM

Nancy, I'd definitely prefer the original one here in Aberdeen. He has been my breast consultant for everything I've had done over the past 12 years or so...... only snag is will I get bumped off the list at the last minute?? The thought of waiting ad-infinitum is depressing.... Tryin to keep the private Op in the back pocket to see what pans out

It's pretty weird we are only 5 girls isn't it

Nbb1032

Carla - I know what you mean about so many things to think about at home.  On one hand I feel I should be doing major physical things - the yard, wash windows, paint etc because I don't know when I will get to them.  On the other hand I feel like I should go out and have fun since I will be housebound for awhile.   And since I will be at my sister's in Baltimore recouperating I am preparing like I am going on a major trip/vacation (stop paper, mail, have people check on the house) except I have no exotic destination to look forward to.  Plus, I have a position at work that also must be organized in my absence and I have been working overtime.  Yikes!  Just writing this all down makes me tired!  And I hate when people say: " Everything is going to be all right!" when they don't know half of what is at stake.  I'd rather have them say, "you will get through this" or something. 

Robin: How will you get bumped off the list?  Is it because of your LCIS status? 

Only five of us - I think all the BS and PS's are on vacation this month.  

Anne068

Just 12 more days.  I've been alternating between cleaning like a mad woman, making freeze ahead casseroles, and taking naps.

I'm not sure if I need to do all l'm doing, or if I'm just keeping myself too busy to think.

RobinLM

Nancy,

Yes thats right. The recommended approach to LCIS in th UK is monitoring. I don't want to spend  my life waiting to get invasive BC. Because of this I had to undergo a psyche eval - June 21st. So, if someone comes along with invasive BC they will be considered more urgent than me, so in theory I could be bounced down the list on a reglar basis. That is the NHS for you

Carlatap

Robin, as I read how you may or may not be chosen to have surgery, I feel so spoiled to be living in the U.S. I really hope you won't get bumped from the schedule.

I've also been wondering if any of your PS's and surgeons have suggested any family meetings so that the family has a better idea of what the surgery and the recuperation looks like for the type of surgery we are going through. I will be in surgery for 9 hours, followed by 5 to 6 days in the hospital, and weeks of not being able to pick up things from the floor and reaching for things once I get home. My family was great when I went through chemo and radiation, and b/c of them I really tried to be strong. I continued to work, but on the weekends after my chemo treatments I ended up in bed hardly able to move or eat sometimes. I just think it would be a good idea for doctors to get the family together and try to help them understand how long a mom won't be their usual self. Its just that kids and husbands tend to think their moms are super women. My nieces were in shock when they saw their mom coming out of the recovery room after having the same surgery I'm going to have. . They are 21 years old (twins) and they broke down and cried when they saw how much pain their mom was in. They were not prepared for what they saw. It can be really difficult for family members.

What do you all think?

RobinLM

Morning Everyone,

There is nothing like that over here Carla, folks just seem to get on with it.

The NHS is basically free, it is paid for by taxation, but anyone requiring a treatment gets it without reference to taxes they've paid. There are waiting lists for everything, so despite having been diagnosed in march/april a lot of people, me included, have private health insurance and that is what my Edinburgh option is.

RobinLM

HURRAH!

My date is confirmed, 31st Aug here in Aberdeen!

Nbb1032

Robin, congratulations on your date being confirmed!  I'm so happy for you.  Now you can at least plan what you will do for the next 4+ weeks.   I only have 4 more days and now I just want it over with.  The waiting is really the hardest part I think. 

Carla, when I read you had aleady been through Chemo I noticed you were Triple Negative.  I was first diagnosed as TN but I have 15% ER weak which is not much to go on. I'm wondering if I should have done what you are did and have the chemo first.  Why did they do radiation if your tumor was so small?   I also noticed you had no positive nodes which is really hopeful and good.   Could you tell me what kind of chemo you were on?  That seems to be my next worry now.   I am also grade 3 so if I have no positive nodes next week I will have almost the same diagnosis as you.  

taranebraska

Yea for Robin!  Aug. 31!  I'm so glad you don't have to keep putting it off.  There's nothing abnormal about being totally stressed out over it, psyche eval or not!  (My paternal line of ancestors, Muir, all came from Scotland, Cambeltown area.)

Like Carla, Anne, Nbb, I am not sure what I'm doing - Aug 10 is only 1.5 weeks away.  I'm cleaning and doing yard work like a mad woman, too.  I'm getting all the animals their stocked up on their meds and food.  My sister and husband will just have to fend for themselves. 

Once a day, it seems like everything stops, all the noise, any breeze, and I have to ask myself, "Am I really having to do this?"

I believe my real anxiety is the SNB, and the pathology report after surgery.  I've heard of and read too many posts here that there is bad news once you've taken your breasts off and they can really look at what's in there.  I'm not invasive yet, and my end goal is to never to have to have chemotherapy.  We all have our bright line, don't we?

Back to the what are we doing to get ready:  I even euthanized the 11-year-old cat I took in two years ago.  He's never been healthy although his previous owner said he was, but how can you tell when he's been living in the garage?  He wouldn't use the litter box cuz there's pain from his irritable bowel syndrome, and he's recently dropped a lot of weight.  Instead of a bizzillion more tests - I said goodbye.  I knew no one in my house was going to continue to clean up after him as I was doing.  But I was hesitating because I was comparing him to me, just cuz I lose my breasts, I don't want to be put down!

Anne068

Robin~ YAY! I'm so glad you got  a confirmed date!! Sometimes I think the waiting is the worst!

Tara~ I've been cleaning, cooking, etc too. Like crazy!  I just don't want to worry about what all needs to be done, My husband is going to have his hands full. As are the children, so I'm trying to plan ahead as much as possible.

 Like everyone else, I have no idea what I am doing. Its like I now know so MUCH about BC, and still not enough, every question answered, only leads to 10 more questions. At times, I just find myself shutting down, and ignoring it.

At one point my daughter asked if it was okay to tell people I have cancer, and my 1st thought was suprise and a "Why in the world would you tell people that?"  Then I remembered.... "Oh yeah. Right. I have cancer."

Sometimes it just seems  so surreal.

RobinLM

Thanks girls..... I certainly feel different, was in a horrible limbo for a while there, unable to do anything dynamic..... now I'm working to a deadline! EEEK...... my house is a tip!  

Luckily, my date coincides with when my daughter (14) goes to her dad - pretty lucky...... dealing with  young babies must be incredibly hard.....

I understand what you say Anne, it is surreal, unimaginable really, and yet we are all doing it......

Anyway, enough of the deep stuff, hope everyone is having a good weekend and keeping calm. 

 

Stonebrook108

Hi Girls,

I had LCIS and decided to have a PBM with direct to implants reconstrution back in 1/09. For me it was the best decision because I wouldn't have been able to deal with waiting for test resuilts every 6 mons. for the rest of my life.

 I just wanted to say that the surgery isn't as bad as you think. I was so worried about how much pain I would be in and it wasn't really painful. Just a feeling of soreness and tighness not any real pain. The worst part are the drains.

Nbb, my PS is one of the ones from www.BreastReconstrution.org Dr. Ron Israeli

If I can answer any questions please send me a PM.

Best of luck to all of you

Nbb1032

Hi Stonebrook108,

Thanks for taking the time to reassure all of us August 2010 MX girls.  Am I correct in assuming that nothing was done to any of the nodes?  Don't you have to check those periodically after a PBM?  Or, is that only if you have found to have cancer?  Just curious.

Robin, "keep calm" --- easy for you to say.  This is my last weekend - I leave tomorrow for Baltimore - and I am cleaning, packing, and generally freaking out.   I  am waking up frequently, second guessing my decisions so far and thinking about future "what if?" scenarios.   I swear, I will be so glad when next week is behind me. 

Tara - I too am also more worried about the SNB than the operation itself (by the way, I get the dreaded radioactive tracer shot the day before - 2:00PM this Tuesday) and what the pathology report will say and the decisions I will have to make.  Oh, so sorry about your cat adding to your stress level.

Anne - I totally understand how surreal this situation is.  I feel better than anytime in my life and forget sometimes that I have cancer.  My friends have been taking me out to lunch and giving me little presents and cards and it's like it's my birthday or something - very wierd.  

Carla - Thanks for thinking about those of us that still are processing the cancer diagnosis and all the decisions that have to be made.   I must feel really good that all that is behind you and all you have to worry about it getting well from your operation. 

Well, I better get back to my cleaning!

Nancy