May 2013 surgeries

AnnBR

I had something puzzling happen this afternoon when I was at my oncology appointment and I can't get it out of my mind. I am being treated by a local oncologist but my recent MX and tissue expander surgery was done at the Mayo Clinic in Rochester since that is where I am having my DIEP procedure. My oncologist saw me today for the first time since the surgery and I was anxious to visit with her about my pathology report. She asked me if the Mayo doctors recommended radiating the area that was removed and I said, no, they didn't talk to me about any follow up treatment. I guess I assumed that was her area but now I wonder if I should visit with an oncologist at Mayo, just to make sure. I guess it seemed kind of funny that she would ask me that, since I thought she would be the one to figure out if I needed further treatments. The area of DCIS was at the outer edge of my breast, so maybe rads would be a precaution. Of course I didn't think to ask further questions until I got home and started thinking about it. I don't know....



I think I'll call Mayo tomorrow and ask to see one of their oncologists. I have to go for a fill next week, so perhaps I can work in an extra appointment.



Ann

GoWithTheFlow

I see two oncologists.  One is a medical oncologist (who was in charge of chemo), the other is a radiation oncologist (who is in charge of my radiation).  They do work together along with the breast surgeon and plastic surgeon if you are doing reconstruction.  

cateyz2

Ann , from reading your diagnosis and treatment history I wouldnt think you would, maybe your oncologist beleives in overtreating?? As I was diagnosed with DCIS and opted for BMX and there was no lypmh node involvement 0/2 my breast surgeon told me there was no need for radaion or hormone. For this was the outcome I was praying for and why I chose to have the BMX. The only thing my BS did say is that because there is a very small amount of breast tissue left since I opted for a nipple sparing bmx I have a very minute chance and he said I would follow up with MRI in 6 months and then once a year after in place of mammogram

ckmoss

Ann- my oncologist said the sane thing Cateyz said..if lymphs clear..no need for radiation... Wierd she would ask though

Isellrejer

The peek-a-boo is for women like me that had saggy boobs. My PS said he is the only one that does this surgery. He takes out at least half the skin, takes nipple and areola off and moves them up 2-3 inches cuts a hole then sews them back on into the hole. Right now I am totally flat to concave except for my nipples. He will put the expanders in once I am healed.

AnnBR

It WAS weird, especially since she never questioned the side that had IDC. That makes me think it has to be the location, perhaps it was close to the chest wall. I need to get to the bottom of why she asked me the question. For my peace of mind anyway.



Ann

mshelton

Ann I'm being recommended for radiation because the path report from the mastectomy showed a "close" margin to my chest wall instead of the "clear" margin.   Do you remember if a clear margin was mentioned in your path report?  Hope it's just confusion in communication between your drs.  I was told that different pathologists have different definitions of what is a "clear" margin.  My Oncologist said they went by having at least 1 mm of regular tissue with no cancer.

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AnnBR

mshelton, thanks, perhaps that is it. I will follow through and find out what prompted the question.

Run4Us

AnnBR... I would make an appt at Mayo and see what they say.  I know it is unsettleing when the Dr says something that we weren't expecting and we leave the appt. with more questions.  Try not to lose sleep over it..you will get to the bottom of it!!

CateyZ... I'm going Thursday for my first fill and now I'm wondering how much my Dr put in when I had my expanders placed during my surgery.  I never thought to ask, so I'm glad you brought it up.

AnnBR

Cateyz2, HAPPY BIRTHDAY!!!!!!!

GoWithTheFlow

Happy Birthday Catey!

AMBNH

First, Cateyz2, Happy Birthday!



AnnBR, I think you are doing the right thing in speaking with the Mayo doctor. Sometimes it's necessary to step in and be our own advocate when there are multiple medical providers.



The Fill: was MUCH easier than I thought it was going to be. A tiny pinch when she inserted the line in each port but that's it. I'm sore now but nothing too unbearable in the least. She put in 50 CCs in each side.



Have a fabulous afternoon, Ladies!

AnnBR

Thanks AMBNH. Glad to know the fill wasn't too bad. When I was in surgery, they filled one side with 50 ccs and the other with 150 ccs. I get my next fill on the 20th.

I called Mayo first thing and spoke with one of the secretaries about my concern. She said she'd pass the message along to one of the doctors. I also had an appointment with a genetic counselor this morning to go over my family history and determine if genetic testing should be done (yes). I happened to tell her my concern and she asked to see my pathology report. When she finished, she said, "well this IS confusing." She told me that I definitely need to follow up with someone who can give me a clear picture of what the report said. So I wasn't the only one who was confused.



Cateyz2 I hope you are having a wonderful birthday!



Ann

Chinneymae

Happy Birthday, Cateyz2!!

cateyz2

Thank you ladies for the Birthday wishes, so far the day has been good, daughter came over and she took me grocery shopping, have to say got a little worn down but she dropped me off at home and will be back around 3pm to make me dinner.

Ann, keeping my fingers crossed for you that there will be no need for radiation!!!!

ckmoss

Just got home from port. I thought they said "sore"..it is killing me all down my arm. They gave me a shot of morphone and a lortab in recovery..then told me to take percocet and presc ibuprofin when I get home..am very..uh..woozy..but still can feel ..has down to low roar..but that was awful awful painful

Chinneymae

CK: I hope you start feeling better soon.



I go to onco tomorrow to find out my oncotype dx score. I'm praying I don't have to have chemo.



Ann: I'm praying you don't have to have radiation.

AMBNH

Chinnemae, I will say a prayer that you don't need chemo.



AnnBR: you must feel good that you got the ball rolling on the path report. That little bit if self-advocacy can stop a small thing from spiraling. I will keep you in my prayers, too, for no rads.



Ckmoss, I'm so sorry you had a rougher experience than anticipated. Rest a d relax and I hope tomorrow brings relief to you!

Hang in there!

AnnBR

Awwww..ckmoss, hang in there.

Chinneymae, I will also be praying for you.

MaineRottweilers

Cyndie, I had my port last Tuesday and it's STILL killing me.  It was worse than the mastectomy.  I missed three days of work. Hope you are feeling better very soon.  I still hate the feeling of it---yuck but I will be, OH-SO-GRATEFUL for it on Friday.  Here comes CHEMO!

Good to see you all progressing so well and speedy recovery wishes and super woman strength to those who need it.

mshelton

Chinneymae--here's hoping for a low score for you!

MaineR..and ckmoss-  sorry to hear about the painful ports.  Hope they get comfortable quickly.

Ann--My path report was confusing too and med oncologist had to call the pathologist to clarify issues.  Doesn't exactly built up the trust.  

Saw the radiologist today, and he mentioned a couple of areas of concern resulting in the rads recommendation.  One was the one I mentioned earlier about the "close" margin in the path report; and the other was lymphovascular within the breast was positive for cancer.  I will have 33 treatments but have to wait for tubes, expanders to be filled and chemo if any.    Still waiting for the results of the oncotype on that one.  Did you have that test too?

AnnBR

The oncotype test was ordered for my first MX but not the second one. My score was low enough that chemo was not recommended.



I can tell I have a lot of fluid building up on my right side. I am seeing my local surgeon on Friday which means I will probably have to have it removed using the hideous looking syringe.



I am going to be whisked away for a few hours this evening by a crazy group of my closest girlfriends. I need a few good laughs.



Ann

cateyz2

Ann what are you referring to when you say fluid buildup?

ckmoss

Cateyz-HAPPY BIRTHDAY!! Sorry this is late coming but had hard time reading earlier..lol..I believe that she is referring to side of MX going towards her arm..or her arm..When you get out your drains, there is still some fluid bldg up because of lymphs removed...my surgeon says its best if you let your body handle the excess, but sometimes your body is not handling or slow to handle, and they have to drain it out with a syringe.  I had him do mine during port..as I was completely asleep.

Ann-Have you heard how accurate that onc test is?

ckmoss

Maine-Thanks for letting me know about your port. I had all these nurses saying its nothing..little sore..I thought they may have done something wrong. 

I've decided when Dr, Dentist, Gyno say "you are going to feel just a little PRESSURE.."  this means you are going to feel pressure and soreness...when they say "is just going to be a little sore"...means HURT LIKE HELL...It seriously felt like I was having a heart attact..hurt all the way down arm!

AMBNH

AnnBR, I hope you have a fabulous time with your friends. Forget about all this stuff for a while.

Chinneymae

ANBMH, ANNBR, and Mshelton: Thanks for the prayers.



ANNBR: I hope you had a great time this evening with your friends. I'm sure it was well needed and deserved!!

ckmoss

I don't know if ya'll have heard about www.GoodWishes.Scarves.org.  If you go to this website, you can request they send you a scarf for free.  I just got mine today and is really nice and very good quality. They, also, had a lot to choose from. The shipping says it can take awhile, but I got mine in 2 weeks.

I hope everyone has a good night!  You are all in my prayers!

AnnBR

I just got back from my night out with the girls and had a wonderful time We laughed our heads off and even shed a few tears. I am so thankful to have such good friends. In July I am having an "itty bitty no pity for the titty party" (because they tried to kill me) and I am going to invite all my girlfriends and female family members. We'll wear pink, play silly games (you can PM me if you want details) and celebrate the special bond that we have with each other. They may think the party is for me, but it's really going to be for them. It will be a blast. Of course I would love if ALL YOU ladies could come. Anyone want to take a trip to central Iowa in July!?!?



ckmoss, yes, the oncotype test is very accurate so I was glad when my oncologist ordered it.



cateyz2, ditto for what ckmoss said about fluid buildup. I've had it before so I recognize what's going on.



Hope everyone has a wonderful night.



Ann

GoWithTheFlow

CKmoss, sorry it's so sore.  I really don't recall mine being that bad.  Certainly don't remember any pain down my arm, but maybe it's just because you had it in after your surgrey and it's aggravated prior sore spots?  Hope it feels better soon. Maine, hope yours is feeling better soon also!

Chinney, prayers that you don't need chemo!  Here's to a low score (is that good?  I don't think I had that test done)

Ann, I was drained once.  The needle is small, the container to capture the fluid is big.  Didn't really hurt much because it's still numb in the area he put the needle in.  Hope it's the same for you!  Have a great time with your friends tonight.

I got a scarf from goodwishes a few weeks ago and it's beautiful!  Mine came pretty quick too!