August 2010 Mastectomy

lago doesn't the breast cancer start at the sentinel node and then spread? so if it is not in the sentinel node there is a very good chance it did not go anywhere else.

lago i don't think so because they usually just check the first node and if there is no cancer there they stop, if there is they keep taking nodes until they find one that doesn't have the cancer. Also I was told if it's not in the nodes it's not likely to be anywehre else but . . sometimes they find it in the node when they do more testing after the surgery and they have to go back in.

There is always that chance that it did get to the node or somewhere else but it's so small it can't be detected which is why they then often prescribe chemo and/or radiation depending on the size of the tumor type of cancer etc.

 At least thats how i understand if anyone disagrees correct me if i am wrong. 

Robin: I had discharge so technically I found it. I discovered this the day before my yearly scheduled mamo. I called my (now former) gyno and she sent an order for an ultra sound too.

My former gyno did not feel my 5.5cm lump in my former A cup breasts 5 weeks prior to this! I know I had dense tissue but the tech doing the ultrasound freaked out when she felt it. My former gyno led me to believe it was a papilloma so I never even checked to see if it was a lump till after the ultrasound (that day).

After the mammo/US it was advised I get both a biopsy and an MRI. I reported the discharge the day before my mammo. That's why it was changed to include a US. I had already scheduled my yearly mammo 5 weeks after my gyn appointment.

I never heard directly from my gyno till I called the office after my biopsy and left a message that I had breast cancer and I was leaving the office and I don't want to hear from her. The next day she called telling me how bad she felt and that she should have called me. She actually didn't even know I went in for a biopsy because some other doctor in her office that I never met before read the report from the mammo/US.

Then the day before my surgery (6 weeks later) I get a package with 2 copies of my medical records and this CYA letter trying to sound nice but you know it was written by lawyer. She's must be scared I'm going to sue her or something.

Yeah I'm still very pissed off at her. I was pretty much left to figure all this out on my own in the beginning… at the time you need the most support from your doctor!

First thing in the morning, last thing at night -- I read all the posts and updates from my August friends --

 Paula -- I know what you mean when you say we all have a connection.  So thanks Nancy for getting us all together! 

Lago --YEA!! negative nodes-- never thought "negative" could sound so good! 

Brokendreams -- GO Team Amazing Grace!

RobinLM, Lago, Winterstorm -- I am also 3 weeks out from surgery on Tuesday. I saw PS on Monday and got my drain out and start my fills next week. I had 100 cc put in during surgery and will have a total of 450cc ( I'm going to put 450cc of water in a plastic baggie and weigh it!) so I have 350 to go at 50 a week -- Groan!  That's seven weeks!  I thought I had done a lot of research, but I did not realize how long this will take and also how uncomfortable the TE is -- tight and sunburny (new word!).  Oh well, in the greater scheme of things,the recon is just a little bump (no pun intended) in the road of life.

Carrol2 and Lago -- speaking of nodes, I am also curious about the protocol of sentinel node biopsy and further lymph node dissection. I went on a site -- PubMed ( information from medical journals that can be a bit too hard to decipher--I don't know if it was really helpful --it may have just added to my confusion!).  At any rate, my surgical pathology showed one of two sentinel nodes with isolated tumor cell cluster (ITC) which BS said is not uncommon with core biopsies. She said there was no regular node involvement and is considered node negative. My onc said same thing and because it was "node negative", I was able to get the OncotypeDx which I find out about on Oct. 4.  Did anyone ever feel they wanted to do chemo, just to make sure, even if there Oncogene studies were below 18?   I have yet to speak with the BS who left this info on my voice mail and then went on vacation.  She said to e-mail her any time, but I did not want to communicate by any other means than direct person-to-person!  So, I have to get all my questions together and call her now that she is back.  

Speaking of doctors-- As soon as my biopsy came back, my gyn called me three times and sent me two cards-- really meant a lot. Yesterday, I had a follow-up with my family doctor of 23 years.  As I was driving to my appointment a big black cloud appeared out of nowhere over my head.  I realized that in three weeks, I had not heard one word from him-- and this is someone, I consider a friend as well as my doctor--someone who calls me with the results of a minor sinus infection!  By the time I got to his office, I was in meltdown mode, bottom lip quivering, an inch away from tears.  When he asked how I was doing, I told him right out how disappointed I was that he hadn't called just to say hi, how are things.  He apologized immediately and said he was very sorry and I think he truly meant it, but it's one of those things that leaves a little hurt-- especially at a time like this when we are so vulnerable (whether we can admit it or not).  And the night before, my 25 year old son's girlfriend asked if it was OK if she took him 2500 miles cross country with her to visit her family at Christmas! 

Well today is another day, life is challenging, but we are all in this together holding each other up for which I will always remember you all! 

(((HUGS))) Warmest thoughts always

Good to see you back sunnyblue

I had a bad dream before I went to see my oncologist. She said she wasn't going to give me chemo. I freaked since for me, HER2+ I felt I was given a death sentence. But it was only a bad dream. Oncologist is giving me chemo, Herceptin, hormone suppression therapy. So yes I always wanted chemo but that's mostly because of my HER2+ status.

BTW right after the radiologist called with my results from my biopsy I had to leave for an appointment with my internist (I did call my husband first). Of course I told him. Yes shed a few tears. When I was in the hospital these residents came  up to me and told me they were his residents and were checking up on me for him. I wasn't expecting that at all. (My internist office is not at the hospital). It was more than my (former) gyno ever did.

Hi all - checking in.  I've been reading but not posting til now - I have my 2nd TX of chemo tomorrow.

My scars are healing nicely from the BMX, but they are tighter on some days than others.  I am wearing a compression tube top every day though.  Things just start getting lumpy and more painful and tired if I'm not wearing it.  I'm up to having 4 now!  ($27 a piece from www.expandabandmedical.com).  I'm on a computer alot during the day, so my right arm, where the 2 nodes were out, gets tight in the arm pit.  I stretch and move it throughout the day.

Finally got a woman's phone number to look at prosthetic bras and forms.  I called my insurnace company, blue cross blue shield nebraska, and they couldn't tell me where to go!  They could only give me the providers for arm or leg orthotics/prostethics.  Finally my surgery nurse gave me some information but I still have to wait to see if BCBS will cover, and wait till I'm a full 8 weeks out which is early Oct.

Lago, carol2, on the nodes being negative - hopefully if we're node negative our odds are greatly in our favor for less chance of recurrence.  But, I'm not that hopeful until I'm 5 years out with Her2+, happy little blood cells can go anywhere.  Reading the Stage IV girls postings ( I KNOW I shouldn't) but boy, if it's going to come it seems to happen fast, and perhaps it was there all along in a piece of bone or brain. 

I'm really scared (yes, I did just say those words) about all of us and our next steps.  I too am so thankful for this site - we're saving our pennies to make a donation.  I know I should be positive - and I know we're all in different places about our chances ... hugs to all and recurrence and complication free from here on out - everyone.

hugs

Hello all

So good to hear from you all again.  Tara and Sunny, nice to see you are back.  I too read the posts here daily and keep tabs on all the August gals.  I have decided to never read the Stage IV posts again.  I get so depressed and a bit frantic.  During my initial CT scan, they found that I have a nodule in my thyroid.  No one seemed concerned about it, so I did not worry till my meeting last week with the Onc.  She wants to "work it up" immediately and so I have an ultrasound tomorrow and fine needle aspirate if necessary.  I am terrified that it will be bad news.  It seems I have had bad news all summer long.  I am usually so positive and easy going, but I have the most terrible feeling of dread.  I am back to crying late at night when my DH is asleep.  I feel so small and fragile.  This has really knocked the wind right out of me.  Sorry to be such a whiner.  You ladies are the only ones who really know what all of this feels like.

Paula

Dear Paula--You never have to apologize for being a whiner here--ever.  That's why we are here--to listen when one of us is scared , when we are waiting for test results and frantic--we all know what it feels like to be alone late at night with our thoughts. We will get through this. 

I have some relaxation tapes that really calm me down--I will try and find out the names and where to find them.  A friend downloaded them on my Mp3 player before I went to the hospital.

 Also--up in the right hand corner of the page is "search"-- I put in breast cancer and thyroid and there are a few threads on BCO and it seems that breast cancer spreading to the thyroid is very rare and all of the posts I read had B9 nodules.

I, too have read stage IV posts and I agree that we should just focus on where we are-- we are very new at this and sometimes we do feel fragile and that's OK.  I think of the women I know who are 10, 15, 20 years beyond their diagnosis and they didn't even have all the advances and drugs and hormone modifiers that we have. 

So, Paula, remember we are all going to be just fine--I just can feel it --so I hope you are now in sweet slumber and tomorrow will bring nothing but the best news...

God bless you Lago for the excellent stats on nodules.  You too Sunny for the heartfelt post. Today things look better and I am sort of myself.  The Ultrasound tech said the  nodule looked "cysty".  I have to wait for the Radiologist to read the scan.  If he thinks it is suspicious I will get the FNA. 

On the bright side, I had my last fill so I am done till the reconstruction surgery.  The downer is that the foob is high and proud and the real boob is low and droopy.  Insult and Injury all on one chest.  LOL! 

Tara in Nebraska - do you have a Nordstroms near you?   I know they carry prosthesis products.  They will fill out insurance forms to give you too.  That's the only one I know.   I have blue cross/blue shield and they will pay for prostheses and mastectomy bras, camis & other products .   I believe all insurance companies are required to do that now - based on a comprehensive law passed a few years ago on breast cancer (covers all kinds of things - prophylactic removal of second breast for symmetry, etc etc).   I think you just need a Rx from your doctor - with procedure code & diagnosis code.  I haven't looked at any yet, because my mastectomy is scheduled next week and I think you have to wait 6 weeks to be fitted for prostheses?  Not sure.  Someone else may know that.

Hi Linda,

When I went for my first appt with my Onc, she did not have the results of the OncoDX, she called the lab and they said they had "run out of tissue".  We soon found that they had sent the tiny tumor and not the 2.5 one that they would base treatment on.  They resent it to the testing lab and I need to wait another 1.5 week before knowing.  Geez..It was kind of a waste of an appointment altho my Onc said if it were a high or intermediate score she would recommend TAC six rounds.  Thanks for the kind words, I am really hopeful that the thyroid nodule is B9.  I am still hoping for low numbers on the OncoDX too.

Paula

Oh sorry I'm good. I went to the port doctor yesterday. He agrees that I'm thin and very small so he's putting a kiddie port in. Guess that matches my training bra the PS gave me. Pretty soon I'll be bald. Basically gone from adult>adolescent>child>soon baby ;-)

So the port surgeon asked me how soon I wanted to start chemo since I didn't have a date yet. I said sooner rather than later thinking it took over 1 month to get a surgery date. So he runs down the hall to get things started and say "OK we'll place your port this Monday then we'll start chemo the same day or next"

So this morning the chemo nurse confirms I start this Tuesday, Oct 5th! But I will be done in February… my birthday month. Good birthday gift.

and my range is slowly getting better. Still have pain in my lower left arm when I reach. Physical therapist isn't sure what that's all about.

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 What's up with you Robin?

Robin: I'm getting my 3rd fill in 1.5 hours. Wow you're still on drugs. I never took any. Not even a tylenol. Granted I was pretty numb. I'm starting to feel my arm pits a little. right arm good. left arm still numb in the back upper area but still better. I have a little bit of the rubber band feeling but I'm still on the numb side. Exchange after chemo and if I need rads then 6 months after that (the earliest).