2013 Sister Warriors
Comments
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Hi ladies
Dont remember if I posted on here before or not
Usually pick a topic scan thru it and log out. Today something caught my eye...had a lumpectomy july 18 and figured the next move was on to radiation.
Even though I have read everything I could about bc I guess it didnt really sink in about the margins not being clean. Just assumed everything would be fine....surgery done...next
Gonna book my follow up appointment today and I guess I will see what the next step is...0 -
Hey everyone,
My mother is doing better, and she is starting to get her feeling back (which includes feeling like their is a wire in there) I am glad we went to Moffit, after all. The tumor was too close to the surface which ruled out intrabeam.
So, now there is the question of RAD scheduling and delivery options. Dr. Corea (The fabulous Radio Onc from Moffit) offered the 1 week, 2/day superfast treatment, a 3-4 week option and finally the traditional, tried and proven 6 weeks.
Here is the interesting part...we met with a dr from Tallahassee (for the final phase of hormones (arimidex, tamox, etc.,) that was mentioned by Kiluk, but this guy was completely against the 1 week treatment and said that it has not been studied that well, etc.,
So, we called Corea's nurse and she said that this was not true and that it was a great option and that Corea would not have offered it, had she not felt it would be a great option.
Does anyone have any thoughts related to RAD treatment options?
I hope you all have a great rest of your week...
Keith
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Rmlulu-- believe it or not, I'm already onto the second foster dog! They get adopted pretty quickly. Both these dogs have given me plenty of fun experiences and laughs along the way. But what I do need now is more sleep (early morning and late evening dog walks)!
The ride is awesome, thanks for asking! Sorry to say, but I don't miss my old car one bit (despite having it for 10 years). Sgc--happy belated birthday! Love the days where BC doesn't cross the mind. Hopefully you got great news from your doctor's office and a path to move forward. Glad your FIL is doing well and taking the cancer bull crap by the horns! As for the hubby, we all sometimes can look over the impact on our significant others. Mine's was always trying to keep a strong face in front of me so I wouldn't worry, but you can see the toll on them that cancer has too. Keep him laughing....and let us know if he does rock the bald as well!
Diane49-- welcome to this awesome group (if we haven't done it earlier). I'm sure you've gotten your pathology report from the surgery already right? it should tell you if you got clean margins or not. Hang in there, one day at a time in knocking the BC beast away!
Tallydiver-- glad to hear that your mom is doing better. I didn't do rads, so I don't have answers to your questions, but hopefully someone else who had rads will chime in!
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I'm sure you are all a lovely group of ladies, but I can't say I'm thrilled to be joining you.
Found lump at the end of June. Knew immediately it was cancer. Was away for several weeks, so couldn't have tests done until end of July. Mammo, u/s and biopsy confirmed - IDC in two spots in left breast. <sigh>
I'm 40 yrs old, married with 2 kids (11 and 7). Haven't told the kids yet, since I just found out for sure last night and I'm too emotional right now. Sending results and imaging to clinic in Dallas and hoping to get appointment next week.
This sucks!
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Oh Lighthouse,, so sorry you have to join our group on these boards but if anything is positive about this crappy disease it is these boards.. they have helped me so much! I had my mx April 16th so am kinda new to all this as well, but lots of gals here have so many great ideas and suggestions, I wish I had posted here before my surgery but all I did was read, read, read, I spent the nite before my surgery reading everything on here I could find. Try to take a deep breathe and get as much knowledge as possible before you have to make a decision on your journey.. I understand how scared you are and that you have young children, that is the worst part of this damn disease, some people think I chose an extreme method when I decided to have my left breast removed but I wanted to get this stuff out of me so I chose the mx, it has to be your decision and no one else's, but it is also ok to have some input as long as others know it has to be your decision in the end. you will do fine, I know that sounds crazy to you at this point but my surgery was the easy part.. I could have left hospital the same day but I chose to stay one night, never used any pain meds, just tylenol the whole recovery. Everyone here is pulling for you and helping you down the path! Take care. Keep us posted on your stage, grade etc. wishing you all the best!
Linda
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Lighthouse lady-- sending lots of hugs your way! This is truly the club that no one ever wants to join. You're allowed to feel all the emotions, the wtf I have cancer, especially at your age, and a whole range of feelings/thoughts that you never thought you would have. Make sure you take someone with you to your appointments, to take notes, as it gets to a point where there's only so much you end up hearing. Hang in there, it does get better, and keep us updated and don't be afraid to ask questions.
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Lighthouse Lady - welcome...but yes wish you did not qualify to join our club:(
This is an amazing group of warriors...this site has the best info so no mr goggle.
Cuetang is right...find an appointment buddy, take your list of questions and have AB write answers and ask when your head goes €#\€M...PTSD shell shocked at times so backup support helps.
You will know when to share...sending calm confident thoughts and prayers.
Join the TX Hill Country thread there are warriors in the big D.
Breathe, ugh c...but we are strong fierce warriors. You will be fine. Focus on today.
Now go blow some bubbles, wiggle your the in the grass, (((hug)))your family.0 -
Sorry you are joining us lighthouselady, but hoping we can be of help and support for you. Please ask questions if you have any.
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Lighthouselady I am SO sorry to hear about your diagnosis. Damn.
Once you get through the grief stage and start working on your game plan to start kicking those cells out of your body, we will be here for you.
There are options each step of the way, and the girls on these posts helped me consider each one carefully.
You are not alone,
BIG hugs0 -
Hi ladies,
I have IDC have had surgery June 12, 2013 for lumpectomy/partial mastectomy - margins weren't clean first try when they checked tumor with mammogram, so she went back in and took it down to the chest wall muscle and got clean margins. Had Sentinel Node Biopsy - node 1 clean but 2 & 3 had cancer - extra nodal extensions meaning spilling out to surrounding tissues. Node that they felt during ultrasound and tried to do 2 fine needle biopsies and core biopsy unsuccessfully on also had cancer but it hadn't burst into tissue so likely why you could feel it. Surgeon scooped out a significant area doing axillary node dissection. Out of 11 nodes, 5 with cancer, and all but 1 had the extra nodal extensions. Cancer in breast showed extensive cancer in the lymphatic & vascular systems. But oncologist said that the actual node involvement is the more serious situation putting me high risk for recurrence so I am on dose dense chemotherapy regime: ACT - 4 of Adriamycin and Cytoxin over a 8 week period followed by Nuelasta shot the next day for boosting white blood cell count in bone marrow. Then to be followed by 4 dose dense Taxol over 8 weeks. Then 6 1/2 weeks of radiation to breast and nodes. Then the hormone treatment because I have positive receptors for Estrogen. Likely course is Tamoxifen first to build up bone density since I have Osteopenia then do the Aromatase Inhibitors. I am mostly over in the July 2013 Chemo group as that is where I am am treatment wise. I got my chemo port on July 1, healed then started chemotherapy on July 18. Although you CAN get port and first chemo same day, my oncologist said to recover first and there was time. Glad I did because you need good immune system to heal from any surgery and it was tender getting used to it. But, so easy!! You use a coating of Lidocaine to numb the poverty area and can feel only the pressure of the nurse pressing down to put the needle attachment into your port. Then the chemo goes directly to a large vein near your heart instead of burning the veins in your arms. If you have nodes removed, they cannot use that arm for blood draws, chemo infusions or even blood pressure checks. So imagine the poor arm going through chemo and blood draws every time. Really glad I went with port although my eyes filled with tears when my surgeon brought it up at my post surgery drain removal appointment. I just didn't want another surgery. I had GA and glad because I could not have handled the stress of being awake having the port put in my chest and the catheter threaded through my neck. Doing ok managing side effects. Wishing all of you sisters the courage to take this one day at a time. Oncologist said to shave head after 2nd chemo. I cut my hair really short Sunday because Saturday it was beginning to fall out running my hand through it shampooing. Tuesday night my scalp hurt like I had sat out all day at a ball game with no hat. Got my head shaved Friday after my Nuelasta shot and much better, headache greatly diminished. We will get through this! {{{{{HUGS}}}}} Sheila0 -
Sheila It's Overwhelming!!!! But we have also been there too. ((hugs)) It's hard. Scary. But here is a good place to be. We are all sharing this new dimension to our lives. We will overcome.
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Hi ladies, I'm done with my chemo and only have one week left of radiaion. I will be getting Herceptin until February 2014 but here is my question. Has anyone had itchy, goopy, crusty eyes at this point. If I try to wear my contacts they dry out and I get blurry vision by midday. Any suggestions? I keep trying eye drops and allergy pills but no real relief.
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Thank you ladies. It is a comfort to know I am not alone experiencing this-- lots of loving supporting people in my life but you ladies and walking this same journey and I need to see you ahead and beside me. Thank you for your big welcoming hearts.
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SheilaB330-- I'm sorry that the results of the surgery didn't give you better news! However, you and your medical team are throwing everything in the cancer arsenal at BC. You will get through this! I'm wishing for minimal side effects from chemo. Hang in there sister warrior!
lovelikecrazy -- meh to itchy goopy eyes!
I hoping those SEs go away soon! 0 -
Thank you Cuetang!
Lovelikecrazy, my eyes are more dry since chemo plus all the other meds-- can't imagine contacts feeling good. So many things are temporarily affected by BC treatments. Can you maybe give your eyes a rest while having treatments and use glasses?
Hope all of your side effects diminish Aug 4! Another day ends.0 -
Hi Sisters --
I am going to jump in here. I have been posting mainly on the Lumpies Lounge, but I see that some on this thread are where I am in treatment. I am in a sort of post surgery limbo, waiting for test results and waiting for a plan.
I had microcalcifications show up in annual mammo, biopsied and found DCIS. BS recommended MRI before Lx. MRI found another area of IDC in same quadrant of left breast; the IDC (1.5 cm) was not visible on mammo or on US; had MRI guided biopsy to Dx. The two core biopsies in 10 days left my "bad girl" bruised and battered, with a hematoma the size of an apricot going into surgery.
Lx with SNB was a week ago -- clear margins and 0/2 nodes; saw my BS yesterday and she has ordered the Mammaprint test, and referred me to an MO who I will see in early Sept. She indicated that because my invasive is grade 3, I may need chemo (her tone seemed to say "probably" need chemo).
So I am here wondering if any of you have a similar profile and trying to wrap my head around the chemo proposition. My DH says just relax and wait for the test results -- I have been poked and hurt so many ways in the past 5 weeks, that a couple weeks with no dr. appts. is a welcome respite. I know he is right, but all the same, I find things to worry about..... Sigh....0 -
TeamKim-- congrats on the clean margins and no nodes! I know it's hard to do, but in terms of chemo, the MO will really be the one calling the shots. Or in my case, they did two reviews at the tumor board for the ultimate treatment plan before my MO would make the decision. I would definitely think about arranging for at least a second MO opinion as well so you can see if their treatments plans are similar or differ. The Mammaprint will also play a big factor into the final treatment plan decision. We all understand the feeling you're going through right now, but unforutnately I don't have any good advice besides hang in there! (hugs)
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TeamKim--what about taking the Oncotype test to help determine if you would benefit from chemo? Seems like your stats meet the criteria for taking the test. http://www.breastcancer.org/symptoms/testing/types/oncotype_dx
Hugs to the sisters that have recently joined us!
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ReneeinOH -- My BS ordered the Mammaprint test (similar to Oncotype) so that the MO would have those results when I meet with him in Sept. I asked which test would be the best and she said the Mammaprint, so unless the MO wanted something else once she contacted him, I guess Mammaprint is what I am getting.
Does anyone have opinions about which test is better?0 -
It's been a while since I posted -- so sorry to see so many new members of our club. I have finished my first three months of Arimidex and the most annoying SE is the hot flashes - but I can live with that. I had follow-ups with the surgeon and the MR a month ago and my first follow-up Mammogram. All was clear, but I had some swelling the drs did not like - so I was off to the a PT who does therapy for patients who have or could be candidates for lymphadema. Insurance agreed to pay for 12 sessions and after 6 she thought she had trained the swelling to move on to a new lymph node - I insisted that I see her at least once a week for a couple of weeks to make sure there was no new swelling, I see her again this Friday. I do not know why all post breast surgery patients are not sent to see a PT -- it was wonderful!! I am telling the MR when I see him in 10 days - he needs to send all patients post treatment! I will return to school for the fall the same day I see the Dr -- so life is a normal as it is going to be!
I hope all get the best treatment and care possible - this site was so helpful for me during the first weeks and months -- thanks to all!!
Jayne
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I've not hear about the Mammaprint test TeamKim. But, if it is similar to the Oncotype test, it will provide another tool to figure out whether you would benefit from chemo.
Jayne, glad you checked in, and to hear you are doing well. Congrats for getting through those rounds. Great that your swelling was addressed.
Tomorrow is my implant exchange. Have to be there bright and early--6 am.
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Renee - we're in your pocket {{{squeeze}}} today for exchange! Speedy recovery.
Jayne - glad you've finished active tx and AI is doable...ugh hot flashes:(. Our new normals who knew...yeah, on top of LE ...wish all received that follow up.0 -
TeamKim-- I think the Mammaprint actually tests for more genes (?) than the Oncotype does. I think it's more widely used in Europe, so that's probably why you don't read about it as much, even though it is offered in the United States. Either way, both the Mammaprint and the Oncotype will give you and your medical team the information that will factor for your treatment plan.
Renee--hope surgery went well!
Jayne-- good to hear from u!0 -
At home. Feeling fine. Exchange surgery is much easier. And no drains!
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Renee- So happy to hear your surgery went well!
Ladies: I am about to begin rads..6 wks 5 days per wk with 5 boosts! Ugh! Scheduled for mapping session on Wed. I am still so uncomfortable at the SN site under arm. Any recommendations?
I met with a hypnotist last week who has worked with BC patients...He has seen less skin irritations and reduced hot flashes and sweats too. Maybe another resource for us.
Sending hugs to all.0 -
Have you seen a physical therapist for your SN site? There are some PTs that work w/BC patients. Hypnotist sounds like a good idea.
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Welcome Diane and all the other Newbies to this thread or to breast cancer in general. I know it's hard to be in this Cancer Club, so to speak, but this site provides Amazing comfort and support...;)
I haven't been on this particular thread for a while but I just want to share a few things from my experience. My SNB from my R breast only showed DCIS, BUT after my lumpectomy, they found IDC. I had borderline margins so I had the choice to either redo lumpectomy to get cleaner margins & have Radiation OR do a mastectomy. I then had 3 SNB's on my OTHER breast (L) after dye MRI showed several (5) hotspots/ suspicious areas, even though mammogram/ ultrasound never showed ANYTHING--BECAUSE I had VERY VERY DENSE BREASTS. **This is a KEY issue, ladies.
I decided there was still a HIGH probability that I could have cancer in this other L breast.
So, that is why I chose to have a double MX instead of just another lumpectomy on my R breast. And, thank God I did cuz I ended up having IDC in BOTH breasts!!!
**I just want to share this--especially for those women who have DENSE breasts, which makes it VERY difficult to find/see cancer on all of the screenings/tests, etc...
Something to Consider when deciding on surgery options. Plus, I REALLY wanted to avoid radiation (normal after lumpectomy) if I could.
Thinking of All of you trying to make the TOUGH choices regarding surgery & treatment options.
Blessings,
violet...Ann Marie0 -
Hi y'all
Renee - congrats:)))
LiLiRI - you will do well in rads...each day is easier. I did 28 full plus 5 boosts...moisturized girl with miaderm and aloe...also did light stretches by laying on bed in similar position with arms...check out the 2013 Spring and Sumer rads threads.
Rads does not hurt...it is more the daily grind of showing up each day and climbing on the table...the actual zap lasts maybe 20-30 secs each direction with time between as machine rotates into position....used hydrocortisone and emul oil with a few days of jeans cream and aquaphor...I did silly countdowns 30 shades if pink, does radiation make my butt look bigger, drew stuck people praying next to my rad tats and a shark...just ask you rad team and do show and ask on Mondays and Fridays...think healing light:). You will do well!0 -
Thank you all for your responses.
The past few weeks have been a blur of tests and appts.
Update. PET/CT was clear except for left breast and axillary node.
Met with chemo Dr.looks like AC 4 rounds DD 2 weeks apart then 16 weekly TH followed by weekly H until I complete 52 weeks of H.
Then comes the pill I've heard 5-10 years on it. T if still menstruating another if menopausal.
I've chosen to attempt a nipple sparing bilateral mast. With tissue expanders and recon after chemo.
Won't know about radiation until lymph nodes are out.
Surgery date will be in early Sept.
Thanks again for your posts, they help when the fear begins to creep in.
Vivian0 -
Renee-- hurray for no drains! Hope the kiddos are all set up for school so you can relax!
Lili-Ri -- good luck with the rads. I second Renee's idea about a PT to see if they can work out some of the issues with the SN site.
Vivian-- we've all been there and will go through the emotional rollercoaster from time-to-time again (unfortunately). Keep us posted on your progress and feel free to vent here whenever necessary!
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