Lumpectomy Lounge....let's talk!

JerseyRenee01

Melclarity:

I am ER & PR + 90%. The HER-2 wasnt tested. He said it not necessary but we can take a look if wanted to. We would need to get my slides & it would delay surgery. I was only inquiring on the HER-2 just to see if I was a candidate for the vaccine.

mustlovepoodles

JerseyRenee, My initial biopsy report came back ER+/PR+, but the HER was equivocal--neither positive nor negative. So I elected to go forward with a lumpectomy. They sent the tumor off for testing and Oncotype DX. This time my stats changed to ER+/PR- HER-.

Brightsocks

After your lumpectomy when the doctor comes in to see how you are doing? Did they tell you anything at that point? They would know about the nodes at that point? Do they say anything else?

JerseyRenee01

mustlovepoodles:

Ok this process is not only new to me but unfamiliar. So if I didnt do the HER-2 test now before surgery it would then show up in pathology report from Lumpectomy?

mustlovepoodles

Yes, they will look at HER2 status when they get the tumor. Sometimes the biopsy just doesn't have the amount or quality of tissue to get a good look at everything. At least, that was true in my case. They get the whole tumor out during lumpectomy, so the quality of the sample is much higher.

PontiacPeggy

Brightsocks, I got the path report, including the lymph nodes 2 days later. Perhaps other centers do it differently and test on the spot and then do a more definitive test afterwards. BTW, it apparently isn't uncommon to wait a week or two for the path report (far too long in my estimation).

HUGS!

LoveMyVizsla

Mine didn't test on the spot. It took 5 business days.

HappyHammer

Poodles....they knew my HER2 status as pos after core needle biopsy result mtg....will always love my surgeon for coming out and sitting on a stool lower than the rest of us...."so, the news is not what we wanted to share,,,"....but, then she did share and had a plan...and, she has been just so caring and bold ever since that day.

PontiacPeggy

That's one good surgeon. Makes you glad you chose her, doesn't it? Very thoughtful.

HUGS!

HappyHammer

Jersey- think you def need to know HER2 status....that will prob drive your treatment in terms of chemo/biological drugs....it did mine for sure and I am just 9 months behind you ( am ER+/HER2+)

....please ask them!!

HappyHammer

Peggy....yes! She is wonderful and I've gone to her twice in past 2 weeks with skin stuff and swollen node and she just does what she does and it has worked....she is in NC and if anyone is in that area and needs a fab surgeon....let me know. There is also a great oncologist who was one of two docs in NC to run the clinical trails for perjeta as a neoadjuvant drug for HER2pos folk prior to FDA approval in 2014...great doc and WONDEFUL onc nursing staff for chemo- located in Hickory, NC.....they are great!

Melclarity

Jerseyrenee

Yes exactly lumpectomy is the best way to get all pathology results including her- or + this is how I got full results as I said earlier, my needle biopsy showed nothing. My BS wasn't convinced so I did lumpectomy, thank goodness I did.After surgery you will know everything.

Hugs

Melclarity

Jerseyrenee- happy hammer is absolutely right, once you know your her2 status only then can a plan be put together.

Xx

Nash54

Bright socks....I knew right after surgery my node and margin status.  They told my husband while I was still in recovery.  

614

Everyone here is so helpful, caring, and wonderful.  Thanks so much.

Good luck to all of you currently going through tx and to those of you who are about to start tx.

Contrats on finishing chemo!

Dear Annie:  I am a school counselor too but I work in a high school.  I love it.  I work in one of the poorest communities in the nation so it is very rewarding to work in this school.

Dear JerseyRenee:  That letter is standard operating procedure.  I got one of those letters too.  I told the staff at the breast center that sending out a letter like that could confuse people, possibly delay tx, and may cause significant harm to people.  They shrugged me off and said that they must send the letter.  I tried.  I threw my letter out.  The letter said that I was fine and that I should come back in a year.  I had a biopsy scheduled for that week.  Unfortunately, I knew that the letter was rubbish.  Many women think that they are fine when they are not fine.  A lady in my support group got one of those letters.  She thought that she was fine.  About 6 months later, her nipple inverted.  She is a "snow-bird" and went to a center in FL.  Her original center was in Philly.  The RO looked at her previous records and told this woman that her cancer was most likely present when she got that letter and she was never notified about the suspicious area.  She believed the letter and thought that she was fine.  Her stage was worse as a result.  SCARY!!!!!!!

Dear Molly:  WOW, WOW, WOW.  You are so lucky that you dodged the chemo bullet.  Timing is everything. Good luck.

Sear Sloan:  I have no side effects from the Arimidex/Anastrazole.  I don't know about osteoporosis because my next scan is a year away.  However, I feel fine so I don't have other side effects from the meds.  Thank God!

Dear ChiSandy:  I hope that you feel better and that you can sing again soon.

To the person with the cold arm and goosebumps:  Sorry I forgot your name.  Go to the doctor immediately.  That may be a serious side effect.  If it is nothing, who cares that you went to the doctor.  However, if it is serious then you must get tx immediately.  It doesn't sound good to me.  Maybe that is because I was just reading the pamphlet that comes with my Anastrazole.  It mentioned that a serious side effect is cold hands.

Radiation for me was easy.  I felt totally fine except for the second to last day of radiation.  I felt as if I were in a cloud/fog on that day.  I felt that I could walk into traffic without realizing it.  I was totally out of it.  I was planning to go back to work immediately after radiation.  (I would have worked through rad tx except for the fact that I was treated in Texas and I live in Florida so I had to take off from work during my rad tx.)  However, I took the next week off as a precaution due to how I felt on that day.  I have a 2 & 1/2 hour round trip commute (and sometimes longer) to/from work and I was nervous about falling asleep at the wheel.  It turns out that I only felt bad on that 1 day.  I did have radiation fatigue approximately 1 month and a half after my radiation ended.  It went away quickly.  I did have minor skin irritation at the end of radiation but not bad.  I was good about using the creams.  My skin turned red and peeled.  Nothing terrible.  Itchy.  Went away quickly.  I did not have tattoos.  They used magic marker and put tape over the markers. 

I have a terrible allergy to bandages as well.  TEGRATOL (however it is spelled) is a clear tape that does not cause a reaction for me.  It is expensive but worth it to avoid a rash.  Good luck.

I would like to answer/respond to everyone but you would all get bored.  My post is already too long.  I just want to send positive thoughts and wishes to all of you.  Just know that you are all strong and that you will get through this. 

When I wrote my last post, apparently, I missed a few pages.  I thought that I had read everything but I missed about 3 pages when I responded.  Sorry for missing a lot.

Thanks again and Happy New Year to all.

I am staying home with my dog who is TERRIFIED of the fire works.  I cannot go out because I can't leave her alone.  My boyfriend will be coming over to my house so that will be really nice.  My kids are going to their friends houses to ring in the new year.

I am wishing everyone a healthy and happy 2016.

 

 

Brutersmom

614 and JerseyRenee The letter is probably the result of physicians failing to communicate with their patients as happened to me many years ago. Fortunately I always have test results sent to my family DR as well as the specialist. who addressed the issue about 4 months later. Fortunately it was nothing serious. After that Incident I always request a copy of the test results be sent to me as well as the physicians.

LOL I haven't felt good the last few days. Nothing specific just not right. Vague symptoms. Think it might be related to all the days of rain and fog we have been having feeling cooped up and also very busy and extra stress at work which is unusual for this time of year. I so want to see some blue sky. It has been a while. Went for my annual blood work I added every Dr. I am seeing right now to physician's who get a copy. I figured if there is anything wrong one of them will find it. If not I will when it is posted to my online medical chart.

PontiacPeggy

About 2 years before I was diagnosed, I got my annual mammogram at the hospital where I'd been getting them for 20-25 years. Usually got the "everything's okay" letter within a couple weeks. Two months later I got a letter saying I should come back in. I was royally PO'd. I even called the hospital administrator and complained. They fell over themselves trying to explain away something that couldn't be explained away (the radiologist was on vacation, the one covering was overwhelmed, blah blah blah). I went to another center and won't set foot in that hospital now. There was no excuse for such a long delay. Luckily I have another hospital just as close. It was the hospital where both my sons were born, where my DH was taken after his widow-maker heart attack. But the level of care had seriously declined in the 3 years after he was there. I felt I could not trust them anymore. But found the best team for my BC at my new hospital.

JerseyRenee01

the secretary just called me. She said soonest they can me back in to see BS is on Jan 12th, 2 days before surgery. I discussed the HER2 Test to be done & she said Nurse not in til Mon to send a script for it.

At this point I feel like I am on their nerves. That not my intention at all. I am just trying to gather as much info as possible. She reminded me this could delay surgery too.

I dunno maybe I need to just forget about the extra appt seeing him on 12th & go forward with surgery on 14th.

I have nausea in my stomach from my nerves being a wreck over this.

Annie88

Peggy-Your experience w/ your mammogram is terrible. I really can understand why you changed hospitals afterwards. When my mammogram at my Drs office came back irregular I was referred to the breast center at my local hospital. They were unable to get me in for a whole month, so I called daily to see if there were any cancellations. I was able to get in sooner due to my persistence, however after being the first patient in they told me I had no appointment. At that point, I told the girl that I would not leave until I got my biopsy. I later overheard others having the same experience-no appointment. They were having some kind of glitch, but very frustrating. I now go to Houston for my mammogram and check ups.

Jersey-Hopefully your BS will communicate with you after the surgery about the pathology. Mine told me that he would consult with my husband after the surgery was complete. He discussed how everything went during the surgery and what to expect in the days that followed. The Oncotype DX took a few weeks to come back. The Her2 should be tested with the pathology.

614-Where were you treated in Houston? M.D. Anderson? I have been in Houston at Methodist Hospital, as a family friend is a practicing Oncologist there. It is about 5 hours from where I live, but my inlaws live there. I love being a counselor too. Eventually I would like to move up to H.S., this is my 10th year working with elementary students. My own children are in secondary too, so I feel like I could relate to kids of that age well.

Brutersmom- I hope you feel better soon. Over the last couple weeks I had not been well, so I went to the Dr to have labs done. I must have had a bug, as the labs were good. It is not fun being under the weather this time of year. Rest and take care 😀..

Jclc83

Jersey, ER,PRand Her2neu tests are routinely ordered on every breast tumor case in the hospital where I work and in every hospital I've ever worked. I'm pretty sure it's done almost everywhere. That's partly how treatment is decided. The only way it wouldn't be done if the tumor turned out benign. The pathologist orders the test or your BS could certainly ask for it to make sure.

octogirl

for brightsocks: my bs told my husband while I was in recovery that she thought it looked good, but wouldn't know for certain until final path report. That was on a Thursday. She called me on Saturday to let me know she had gotten the report and all was clear, nothing in nodes. I really appreciated the weekend call, yet one more of many reasons I love(d) her.

Octogirl

PontiacPeggy

Annie, when I went to see my PCP (actually saw an NP) because I had a tender spot on my breast, they sent me right away for a mammogram (which was due). That led to a whirlwind of biopsies and ultrasounds. My PCP called me with the bad news like on a Tuesday evening and got me in to see the BS the next day! I had my lumpy on a Wednesday and the BS called me Friday evening with my path report! Octogirl, there's nothing better than a BS who understands that waiting is excruciating.

HUGS!

Brutersmom

Peggy I agree. The waiting is the worst. My surgeon was willing to do surgery right away or wait. I chose right away. No regrets did the second opinion afterward for treatment. Was offer lumpectomy or MX. Did the lumpectomy. I am actually glad i did because they were having trouble with the Her test coming back equivicol. Tested five different samples till they got a negative.

JerseyRenee01

Jclc83:

I just contacted Lab myself. They said they can run the test but just need script faxed over to them.

HappyHammer

Annie and 614- I too, am an elementary school counselor in South Carolina. LOVED it! Retired when my dad died unexpectedly and hubby returned from year in Afghanistan June 2013. Decided that it was "time".

Took on a part-time position at a short term behav mod program for elementary children in our school district. As you know, the parents were the ones who mostly needed the b-mod and the families needed therapy and agency help to get things going more positively. LOVED it- lots of job satisfaction when you can help make a difference in not just the child but the family. Took a leave from that position after the BC diagnosis but am hoping to return in Feb!

Brutersmom- hope you feel better soon and wishing for you some blue skies- it has rained for several weeks here- currently at 1 inch/hour. Wish we could send some of it to Cali as we are flooding everywhere...a huge 100 y.o. old tree fell across our back yard last week because ground too saturated to hold it up any longer (it had grown on edge of creek bank)...scary!

JRenee- sorry you are having so much trouble getting what you need done!

Agree with you all- waiting IS excruciating. There could be a better system since it seems to not be the case some places. It took 10 days to get the complete path from my core needle biopsy but it was due to the HER2 testing. Glad we waited though as I was able to have the neoadjuvant chemo. Plus, tumor had shrunk (is that proper English and, so lumpectomy area was smaller. They found the DCIS at that time.

Think you really need al of the puzzle pieces before trying to put together your comprehensive plan.

Sloan- are you using anything special on your hair as it grows out?

JerseyRenee01

ugh the Weather!!! I cannot tell you the last time we saw the Sun here in NJ!!! That sure doesnt help the mood!!

Sloan15

Happy Hammer - I just use baby shampoo. I was thinking today that my hair growth seems to have stalled. So, I bought Biotin chewables. We'll see if that does anything. What are you doing?

LoveMyVizsla

I think biotin makes hair and nails grow faster. I was taking it to counteract hair loss from methotrexate for lupus.

I was just about to head to bed last night when we had a small earthquake! Woke me right up!

I think I have a seroma going on. I don't think they would do anything about it since it doesn't seem to be protruding, but it is causing some discomfort. How long does it take the fluid to reabsorb

Sloan15

I read about your 4.5 earthquake. They had a 4.4 in SoCal yesterday. I gave a little heads up to my boys in case we have one in other parts of CA. I was in a 6.0 and 6.2 earthquake years ago. We lived in the countryside, so there was no damage. BUT, what they don't tell you about bigger ones is that they last for a minute or so. All the smaller quakes I felt were big jolts. The big one in Japan lasted 4 minutes! So, when I taught kids about earthquake drills, I told the kids it will seem like the world is coming to an end, but just stay put, get your head and neck next to something sturdy, and shield body from flying debris. I'd choose quakes over tornados because bad quakes only happen once in a while.

Melclarity

JerseyRenee - Get the Her2 test done if it makes you feel better, but honestly, it makes no difference this is all ascertained from your Lumpectomy and pathology results, this is how they determine treatment as JCLC also says. You're being proactive and not a pest! do what settles you.

x