MIDDLE-AGED WOMEN 40-60ish

marlegal

Another quick pitstop to say HI and hope all are having a good weekend, side effects and fears aside. I love that our thread continues to get new members, but it makes it hard to catch up when you only have time on weekends. I miss my regular catching up and knowing what's going on with everyone but reading five pages in a sitting doesn't work well for me, so I have to settle for some quick scanning of a page or two. Always know that I think of my good buddies often and love reading the posts I can.

Eli, your topper this week (swan) goes well with my avi!

Newbies...I hope your journey is a good one and that you get all the info you need, whether from us or from bc.org in general.

Love and hugs sistahs.

Dianarose

Have an appointment with my MO this morning so I got up early to go over things and write down all my questions. I pulled out my last path report that I was given and was told it was the report from the mastectomy. I had put it away with all the other crap because it was ugly and I didn't want to deal with it. Well, I noticed some things that were just not right. It said the specimen was collected on 3/15 which was my lumpectomy date. It also said the specimen was from lumpectomy. The date completed said 4/15 (mastectomy was 4/11). I thought is was weird that the sizes, grades, etc... were exactly like the lumpectomy report, so it is one of two things. Either they gave me the wrong report and I got an ammendend lumpectomy path report, or they sent out the tissue from my lumpectomy and not the mastectomy. Either way I am really upset this morning. When I asked the BS for a copy of the last path report she is the one who handed it to the office help to make a copy. Now I wish I hadn't shoved it in the desk drawer and found this mistake earlier.

I want off this roller coaster !!!!!!!!!!!!!!!!!!

2FriedEggs

Dianarose That must be really frustrating. This whole rollercoaster thing is bad enough with out having screwed up paperwork. I hope you get it squared away today and that it turns out everything is much better than you think

Dianarose

I am almost certain I have the wrong report because they told me there was a total of 17 positive nodes and all I can come up with is 4. Also she said there was a brief paragraph about the left side having no cancer and I can't find that either. I am just tired of mistakes. There have been way too many with me. You have to be on top of everything and read everything a thousand times. It's hard when you are already an emotional basket case.

barsco1963

Dianarose - I hope that you are able to get everything straightened out today. You have enough to worry about. Good luck - keep us posted.

Dianarose

I am stressed enough not knowing what the plan is going to be with an Oncotype score of 6. I know I have a lot of postive nodes, but I just can't see how chemo is going to make a difference when it's the same cancer.  I am getting a dam headache.

Meece

It is so frustrating when you read your medical records and there are mistakes.   At least you can question it today.  Offhand I can rememeber scanning my Rad Oncs reports and seeing where he commented that my port site looked good. I NEVER had a port!  Whose chest was he looking at???  I've also had reports which said I had an ultrasound on my right breast when it was a diagnostic mammo on my left one.  It appears that we have to be our own proof reader on our medical records.

Dianarose

Meece- it is dam scary. The first surgeon I went to had me scheduled for a left breast lumpectomy in January. It was the right breast and he had done a lumpectomy on the left breast over 7 yrs ago. I found a new surgeon.

Meece

So far none of the errors I have found have been that dangerous, but any mistake in your medical records is bad because it can affect future tx.

2FriedEggs

Dianarose-thats crazy about the surgeon scheduling you for the left breast again. Glad you found a new surgeon. Kind of reminds me  of years ago when my obgyn did my hysterectomy .  About  two years later when I went in for a yearly exam he ask me " when is the last time you had your period." I told him "I haven't had one since you took out my uterus!" He seemed a little embarrassed lol. But let us know what happens today with your reports. We'll be thinking about you.

Kleenex

Dianarose - I haven't been on here a lot for a WHILE, but I used to be one of the regulars. I had ILC with an oncotype of 11 - 2 sentinel nodes were clean, and I had a 2.1 cm tumor. Highly hormone receptor positive. Chemo wasn't offered by the medical oncologist I ended up with (she is part of a team with the breast surgeon and radiation oncologist - they're in a "Breast Center") because I'd allegedly get only a 1 - 2% benefit from it. BUT I originally saw an oncologist who'd said that he was completely going to make the chemo decision for me based on SIZE. There are so many different approaches. In addition, there's the matter of your cancer being ILC, which is the neglected stepchild of the breast cancer world. The tendency is to treat it just like IDC, but from the little available on the subject, it has some differences in how it grows and behaves...

I hope you got some good answers from the oncologist! Your pathology reports sound very confusing and inconsistent. It is interesting to me that your Oncotype came back as a 6 and yet it was allegedly in all of the nodes they tested. It STILL may not mean that chemo would help you: one of the anti-hormonals may be the best thing if it's typically highly hormonal ILC... But some women with ILC get a good, visible response from chemo. Have you been over to the ILC forum?

Keeping my fingers crossed that you get good answers and a plan.

Coleen

prayrv

Hey Colleen

Nice to see you again.  Hope all is well.

Hugs,

Trish

cmbear

Hi Coleen!! Glad to see you pop back in.

Dianarose--how did your appt go today? Sure hope you got the answers you needed.

Saw my dentist today and my hygenist was so impressed about how good my teeth and gums were( except the bare tooth that i have "sawed" along the gum line over the years. Nice to know things are getting back to a semblance of normal. Yeah!! For healthy teeth!!!

 

Dianarose

Had my appointment with the MO today and it really sucked. They had given me the wrong path report and he gave me the right one today. Now I went from stage IIIa to IIIc. He basically said he has to offer me chemo but based on the onco score the only thing he would probably be giving me is side effects. He also said that based on the nodes I probably have some undetected mets somewhere. I felt like he was just writing me off. So based on what he said it would be radiation, ovaries out, hormonals, and he won't write the script for Metformin, but instead wants to put me in the trial. I don't want a GD placibo based on my path report. I think I am going to get a refferal to Dana Farber. He is going to see if I can get in the trial for the BC Vaccine, but said I might not qualify because I didn't have clean margins. It has not been a good day at all. I am so depressed.

I am having a hard time accepting all of this. What really sucks is I feel great and he basically made me feel like he was giving me a death sentense. How are we supposed to stay so positive when the doctors aren't.

elimar86861

Hey, Dianarose, I had been waiting all day to hear from you, and now feel at a loss to comment on the general suckiness of the whole situation.  I think you could benefit from hearing a second opinion from Farber.  It may not change a thing, but maybe it will add to your confidence level if you do skip the chemo.

The 17/17 nodes is serious, and it would be worrisome to anybody.  Moving to stage IIIc does sound worse, but remember it is a guidline for treatments and I don't even think it changes yours at all.  Such a shame that your Dx had all the extra weirdness associated with it, but we are still with you and trying to help make sense of it all too.

Dianarose

Elimar- he also said that before the Oncotype test everyones treatments were based on stage. Now that they have another tool they don't know what to do for those who get little or no benefit from chemo. So many women have had and continue to go through chemo for not. It is sad. I just wish they had something in it's place. The nodes are really a double edge sword. With clear nodes you feel safer that you don't have mets. With positive nodes you are scared that they didn't stop there and at the same time you are glad that your nodes did their job. It's all a mind game.

I am going to call my reg doc and get a referral to Dana Farber. One thing that made me nervous with this MO is that he is head of the clinical trials for the hospital and I am the one who told him about the trial with the vaccine. He had to leave the room and go look it up. One of the other trials he showed me I didn't even qualify for and he was telling me about different drug options and then said that most of them are only available in Austrailia, well Why tell me about them.

Momine

Diana, so sorry about your sucky doc appointment. That is really terrible that they gave you the wrong path report, and the MO's attitude stinks. I definitely think you should get a second opinion.

Paula66

Diana I do hope you get a 2nd opinion. 

Meece

So sorry for the bad day, Dianarose.  Go for that second opinion!

lisamarie68

I love ya dianarose ... on my way to PS today hoping my drains come out . I am still in so much pain cannot take it anymore

elimar86861

lm68,  I don't know why so much pain.  Hopefully the doc can figure it out & HELP.  Also, that you you return drainless.  (I'm so glad I didn't have a typo on that last one.)

madpeacock

Was away for the weekend and then crazy busy yesterday, so trying to catch up...

Lisamarie - hope you have a better PS appt today and get those blankety-blank drains out! 

Dianarose - Sigh. I just don't have words. Your onc would make me crazy. I second (or third?) getting a second opinion - if not at Farber, then somewhere local outside of the group you are seeing now. There are so many GOOD doctors out there who are willing to fight for you that it is unreasonable to keep seeing someone who doesn't care about you. I wish you were here in GA so I could refer you to mine. She's SO good...

cmblastic - I need my shades for your dazzling teeth! 

Talking about medical record errors - I'm a transcriptionist, and I hear the docs change things midstream all the time - left vs right, etc. I'll get through a report and they'll say "Please go back and change everything to LEFT instead of RIGHT." Since I transcribe pediatric neurosurgery, sometimes they change boys to girls (he to she) and with the funky names these days, I have no clue, so I have to flag it and have the office doublecheck.  One of my docs yawns a LOT during his dictation and does not repeat what he said during the yawn, so he gets flagged quite often...

dechi

Madpeacock,

I'm a medical transcriptionist also and concur with what you were saying about docs.  I don't have a yawning doc but I do have a burping doc!  Every single day he belches during his dictation.  I split a gut everytime I hear it.. 

cmbear

dianarose--I am so sorry that you are going thru this mess. You should definitely seek a second opinion. I can't believe a doc would say that chemo would do nothing for you but give you side effects. I had ILC and 6 months of chemo knocked a 8 cm tumor to NED. Lord knows what it did to any nasty "floaters" in my body. I know its different for each and every person, but I don't regret my chemo. Seek and learn all your options.

lisamarie--yearh for the drains out--boo for the pain. Hope your doc figures it out. And at least getting the drains out will make you feel worlds better!

cmbear

oohh burping and yawning. yuck. 

HAPPY MAY DAY LADIES! HERE IS MY BASKET TO YOU!

 

madpeacock

Hi dechi (waving)!

Well, we won't even go into the urologist I used to transcribe that dictated in the bathroom - complete with grunting - and then flushing sounds. Oy. And the other urologist who was having an affair with his nurse and she would sit on his lap while he dictated. He let her say things sometimes (he would tell her what to say...), and then she would giggle. Double oy. He left town shortly after that...

Then there are the orthopedists who think it is okay to dictate outside of the cast room. "The patient comes in with a BBZZZZZZZAAARRRRRRWWWWWEEEEEERRRR (sawing off casts...)"

Good times!  

elimar86861

Yawning, burping, grunting, flushing, sawing?  So professional!  Hahahahahahahahahahaha!

                                                    

Anonymous

Good Morning everyone, Has anyone heard from Janis?? I know she was having surgery, and was going to be in the hosp for a bit. Just wondering how she is doing.

dechi

Madpeacock,

 It's always good for a laugh, huh?  I've heard arguments, talking about getting wasted on New Year's Eve, all sorts of stuff.  

justmejanis

Lory...thanks for asking!  I just finished posting in another thread before coming here. 

I am doing much better than I was.  The surgery was so painful...doctor said my bowel was a mess.  I went home with a Foley catheter which I had removed Thursday.  I could not pee at the doc's office so the nurse had to show me how to use a catheter.  She sent me home with a bunch.  I was determined NOT to use one so finally ended up going on my own.  Thank goodness! 

The whole experience was awful to be perfectly honest.  I never shed one tear over my cancer.  I had a huge meltdown in the hospital after alarms kept going off and nobody responded.  Turns out my pulse/ox went down a bit and later Nurse Rachett told me the alarm going off in normal.  Really?  Nice of them to share that with me ahead of time.  Long story but by the end of the day the nurse had to call my doctor to prescribe something for anxiety.  I was about screeching out of the bed.  It was bad.  She was so inept.  I ended up reporting her later to the charge nurse and requested a different nurse for Tuesday day shift.  She had never even checked down south at my incisions.  When the night nurses came on they replaced a nasty bloody maxi pad that had been there all day!  I had no idea it was even there.  It was awful!

Anyway home now and super sore but doing much better emotionally.  I honestly do not know how I would have gotten through all this without knowing all of the love and support I got from you all.  THANK YOU!!!!!!

Much love and healing hugs to all,

Janis