January 2017 Surgery Group
Comments
-
cowboy up, I'm in the waiting room with you all as well. My appt with MO is Monday.
I'm a little over a week from my surgery, lumpectomy, and I feel like someone tried to rip my boob off. Apparently due to all the "reconstruction" they did to fill the hole. So I won't complain. 4nodes all clear! And they cleared the margins. 👍 Will definitely be doing radiation, meet with them on Tues. but won't know about chemo until Monday.
It's hard to keep up with everyone and all the posts, but I'm sending out bigs hugs and lots of support to you all.
0 -
What's the deal with pre-op (aka fear-op)? I wasnt aware that this might be hard too!
0 -
I had a fear at the pre-op that they would find something else wrong with me. That was my fear. It was actually pretty easy though.
DaniCalifornia, what is your grade? I am Stage 1 like you and Grade 2. I know some people who are Grade 3 that have to do chemo but haven't heard the results with anyone with Grade 2.
0 -
its almostnthe weekend-we made it through another week of recovering/waiting/appts/anticipation. what is everyone up to? this is me:
0 -
Cowboy - I was determined to be stage 1, grade 1 ... clear margins, no nodes .... Highly ER/PR + and HER2-. I even got a 2 on the Oncotype Test. You'd think I'd be on smooth sailing to the land of skipping chemo but my MO was spooked by my Ki-67 number (high at 23%, cutoff is 20%), and by "focal perineural invasion". So she is redoing the Oncotype before letting me off the hook. She said something awful like "if it ocmes back even a little bit higher yo uare doing chemo. I was thinking that a 2 is about as decisive of an Oncotype score as you can get. Hopefully the redo reconfirms the low score and she and I don't end up going rounds on this.
Just sharing that to say stage and grade aren't the whole story, there's a million things that could tip you into chemo land. As much as I really really really don't want to do chemo, I do admit that I really really really don't want a cancer recurrance so if it is clear that research supports my doing chemo to stay healthy I will do so.
0 -
Pyrrh- fingers crossed!!!
Had a talk with a 70 year old lady today, stage 4, six years today, and doing great. I was asking tons of questions. Get this, she had had her BMX with expanders on a Tuesday and was at a convention center walking around on that Friday. She was lovely to talk to, boy is she positive. I hope some rubs off on me. I've had a boo hoo day. My pathology report is tomorrow and drains out. I'm stressed. My ps did find positive nodes in the operating room, I don't remember how many, I think 2. Crap!! I'm trying not to worry.
0 -
They didn't tell me my grade and I forgot to ask when they called with my results after surgery. I've sent a couple emails since, but still have not heard back. I know I'm still considered stage 1 but grade unknown. And I'm triple positive pr/er and HER2.
0 -
My brain understands there are so many factors but that doesn't stop me from guessing. This is the control freak in me that just wants to know what the outcome will be. I am not good at waiting and I try to research everything to death so I think I know the answer. My appointment with the breast surgeon was cancelled last week so I don't know anything except the important clear margins and clean nodes. I saw the plastic surgeon but he doesn't have all the test scores. I just need to be more patient but it is so hard
0 -
Cowboy - Can you call your office and ask them to upload the pathology to your portal (if they have one) or email it to you? Mine emailed them to me within an hour of my phone call. At least then you (like me) can go researching all of the words that show up!
0 -
Dani - I am pretty sure the HER2+ instantly qualifies you for chemo that targets that type of cancer. They have a very specific drugs for that particular gene. The good news is that there is a lot of research on that one and they can target it directly with many different treatments. Here's a page of info on that: HER2 Status
0 -
Pyrrh, the Oncotype DX isn't in yet so I won't know until it is. I'm going to call the lab and see if it will be ready for my appointment on Wednesday.
0 -
cowboy, I am soooo the same way. And I literally just finally found out i am grade 2.
Pyrrh, that's what I'm afraid of with the her2+
. Targeted hormone therapy I can deal with, but I'm afraid of having to do chemo0 -
hi,
I think a lot of the pre op fear is the waiting for pathology afterwards and the unexpected that can happen to change the coarse of the original plans. I was initially told I would need no further tax aftervthe lumpectomy . But pathology found infiltrating DC so therefore, I was blown away thinking , now it is worse and now I need more surgery. I knew in the back of my mind itvwas possible , but told not probable. So for the waiting room after the procedures was stressful . My surgeries were both classified as minor so having had a thyroidectomy a couple of years ago , I was told this was nothing and it wasn't . But I just had lumpectomy and then the 2nd was an SNB. But other surgeries like these with drains and much pain , I cannot speak to . But these courageous women here will know what s what .
Good Luck Pamela , we ate here for you always💪🏻
0 -
I hear ya, Dani. Big hugs. Just remember that we are all here for support through the whole process.
They keep telling me that it isn't as bad as I probably think it will be... Everything I've read on these forums lead me to believe that there indeed ARE side effects, but that if you do your research and stay ahead of them it is all very manageable.
Personally I'm resisting chemo with every ounce of my being, but if it turns out that the experts feel that I really should do it I will take a deep deep sigh and jump in with both feet.
0 -
Well. I just found out when I will have answers. Valentine'a Day I will meet with the MO. It could be a great Valentines Day or a crappy one.
0 -
Bring a box of chocolates and tell your MO s/he can have it if your Valentines Day remains great. LOL. (No, I'm not above bribery. And Yes, I understand that won't actually change a thing ...)
0 -
haha!! I tried flirting with my MO so I wouldn't have to take tamoxifen. Epic fail.
0 -
Ok, my day sucks! Not really, but I am a bit bummed. I was hoping to be able to have brachytherapy (5 days) and I met with the RO and he doesn't do brachytherapy and doesn't know anyone in the area that does it
. So in 2 weeks I will be hopping on the radiation train for 28 + 8 treatments. I guess since I have Herceptin every 3 weeks it's not like I am not in it for the long haul, but I was hoping for one aspect to be the abridged version... Looks like I get to institute another countdown! Looks like I'll be rolling those dice of yours a little longer Annoyingboob!DaniCalifornia- I am Her+ and am on Herceptin for a year. If you end up on this one, it doesn't have as many of the side effects as "ugly chemo".
I hope those of you that are in the Waiting Cabana get your positive results ASAP.
Love you Ladies!
0 -
Hi Ladies - I'm still trying to catch up with everything. I am in a bit of a fog still from the meds. Had to make a run up to the ER last evening due to excruciating pain in my right TE area and where the nipple used to be. It literally felt like fiery ice picks and I couldn't let anything touch it - not even my pj top. Thankfully they got me back quick and pumped in some diluaded. I seriously thought i was dying. They pulled labs and not infections - just appears to be nerve and muscle spasms. They think it's form the drain suction - just no where like what I want through before. Once I let it go a bit more lax it was ok. Saw myPS today and he's happy with progress, Im still having hard time typing and focusing so bear with me on the short update. Oddly enough, so far the cancer and side the nodes were removed from hurts the least.
Taking it easy today but really anxious to shower and wash my yucky hair/
Time to nap...
0 -
I'm not sure if I'm posting in the right group, please advise if so. I had BMX on 12JAN2017 with bilateral DIEP flap reconstruction. I had a total hysterectomy with ovaries in June 2016. Started HRT and 5 months later I have a 2 cm palpable tumor on my right breast at 46 YO. I had a negative mammogram one year prior as well as a breast exam in June 2016. I found the lump myself and got an appt with GYN and next typical tests, US (gyn), diagnostic mammogram, US, and Bx. Eventually had genetic testing and learned I'm BRCA2+. Crazy as I am the only person on either side of my family with BC. I had complications during my DIEP reconstruction and my PS had to remove part of my 4th rib. In doing so she came upon one of the Internal Mammary Lymph Node that was very large and hard. She sent it off to pathology for review and it came back Metastatic Carcinoma - 2.5 cm. I had 5 sentinle nodes removed as well. Not sure I understand it but the left side was all negative and the right side came back with 2 nodes with isolated tumor cells. I guess I don't know how those aren't considered positive if they see tumor cells in it. I'm sure I have indicated it incorrectly in my summary. Also, my diagnoses changed a bit from biopsy (single cancer of ILC) as it is now Infiltrating Pleomorphic Lobular Carcinoma, Grade 2, also, a second cancer with Lobular Carcinoma in Situ. The BS said I am likely Stage 2; however, PS says Stage 3 since it met the requirements of the "tumor of any size that has not spread to distant parts of the body but has spread to the internal mammary nodes (IMN)". I'm nervous that my BS is minimizing my cancer because I have the "ideal" kind of BC being that I'm ER+/PR+. The BS wasn't even the one that identified the IMN. I was sent for a PET scan last week and thankfully it was NEG. I was told I will now have to do radiation. I will meet with MO and RO on 2/8 at which time I will receive my Oncotype DX results. Hoping to get some answers soon. I'm having issues with the abd incision opening up and weeping serous. My PS said if it continues to open that she will have to pack it and place another wound vac. My breast also have the weird wave of feeling so tight and start contracting that it feels like I have an underwire bra on that is 3 sizes too small. Anyone else experience this? Also, she said I couldn't do any additional revision surgery for 6-9 months following radiation. That was quite a hit because if Chemo is needed it will occur before the dreaded 6 weeks of radiation. I feel like cancer just keeps trying to break me, but I will fight for my family (mom of 3- 14 B, 12 G, 10
. I just pray that the treatment they decide upon is the right one and I can put this awful year behind me.0 -
Hi WGraf, our group is happy to adopt you I am sure.
Sounds like you are having a tough time of the recover process, I am very sorry
There is a lady in a thread "Lumpectomy Lounge" (her name is something like mustlovepoodles) that had all sorts of troubles with her wounds closing up and ended up with a wound vac for a long period of time, perhaps you could contact her for advice.You can help us out in this thread and others if you go into your profile and update as much of your diagnosis and treatments as you know and make them public - that way that info will end up at the bottom of your posts and will help us all to relate to your situation. We have a lot of members and it's hard to remember who did lumpectomy vs masectomy, chemo or no, nodes or not ... etc.
Hang in there, I'm told there's a very bright light waiting for us all at the end of this (sometimes long and dark) tunnel!
0 -
Beachbaby - where in California are you? I find it crazy that there's no one that does it near you there. If you really would like to see if it's an option for you, I would call your breast surgeon and see if s/he has any other radiation oncologist to recommend. Could be the one you saw just doesn't want to lose the business.
0 -
So much happening today. Just talked to my breast surgeons office and got my Oncotype DX score and it was 17. Hoping that is low enough to do radiation and tamoxifen only. Feeling very hopeful right now.
0 -
Pyrrh, I thanks for the heads up. I think I have updated my profile to public now. Hope your able to see it now.
0 -
BeachbabyK, just sent you a private message with link to my RO in AZ. You can choose to have them coordinate accommodations while in AZ or you can stay at a donation home. You could even stay with me for goodness sakes! If this is an option you really want to pursue. I hate the medical run-around...please make sure you are comfortable with your decision...don't let them push you around! I'm having my catheter installed in Scottsdale AZ (DCISinAZ - at the Virginia G Piper Cancer Center) and then I will have my actual radiation treatments closer to my home. I live pretty far from Scottsdale so not feasible to drive there 2 times a day and 6 hours apart. I might as well stay in a hotel or the donation house! Anyways, there are tons of options and this may not work but I wanted you and everyone to know there are options if something is really important to you.
http://www.arizona-breast-cancer-specialists.com/out-of-state-patients.html Here is the link in case anyone else is interested.
0 -
Cowboy-up! That's great! Did they say no chemo?
Welcome to the new ladies!
Hang in there Shellybeans! Take good care of yourself and enjoy that nap!
I'll try to check in later tonight and see how everyone is doing...gotta get my work day wrapped up early so the PT can make me cry in a little while. She warned me that working on these cords is going to be painful. Hopefully like the rest of this, it's worse in my head than it will actually be.
0 -
FightingirlI still need to go to the MO to discuss it but it is a good result. Appointment got changed an hour after making it. It is now on the 17th. Didn't really want to go on Valentines Day anyway. Lol
0 -
Wgraf - welcome. my goodness. Quite the road you have had already! Sending you lots of love and luck on your wounds closing up.
I had a mastectomy/reconstruction and I also had a lift and reconstruction on the other side. I am two weeks out from surgery today and I still have the tightening and loosening tightening and loosening. My boobs feel like they are those anti-clot things they put on your legs after surgery! My plastic surgeon said it is common as the muscles spasm and get used to everything. Definitely seems like I have it more when I am doing too much activity. With three kids 16 and under, I can imagine you're probably doing more activity than you should, too!
Welcome to this group. You'll find lots of encouragement here!
0 -
Fightingirl - hugs!!! And lots of positive healing energy coming your way. Feeling reflective today also about my "new normal". Its a lot to process...just keeping breathing and take it one day at a time. And remember we are all here for you anytime you need to vent.
Thinking of you and praying for you
0 -
Welcome wgraf,
Sounds like you have had one heck of a ride already . You have definitely come to the right place. You will find many strong women here also fighting vigorously for themselves and their families.
Together we fight the fightbof our lives 🌸💪🏻
0
