Calling all TNs

Shopgal2

cocker sending you more healing vibes.

And oh no meadow. That is heartbreaking. So sorry.

Shopgal2

heading to my mo tomorrow for my 6 month pfc checkup. Hoping he can help me feel more at ease about the results of my mamo last week. The 6 month waiting is nerve wracking. Also hope that he says the same as my bs said last week.

On the checkup front is there anything I should be inquiring about at 6 months?

Cathytoo

Meadow...What devastating news and what a loss to all who knew him personally and professionally. It is rare to find such a caring doctor. My heart goes out to you and his family

LifeAloft

Meadow...so sorry to hear

Cocker...hope you are feeling better!

I had my lumpectomy yesterday, I'm feeling good and got some great news. The lymph node that had 3cm of cancer in it when this all started was cancer free!!! Now just have to wait for the rest of the pathology.

Meadow

life aloft, so happy for your news!

Thank you all for your condolences, Ally, yes, did not realize how much of my survivorship is tied up in that relationship. To make grief worse for their family, he was traveling to plan the funeral of his 8 year old grandson who just died of leukemia. Today is the funeral for the child. Can you imagine their sorrow. He was so wonderful, I am not sure how I will transition to a new Doc. For those who have, it helps to know it can be done

Angtee15

Meadow, what an horrific turn of events for your oncologist's family. Gosh life really can take a turn. Sorry for your loss.

Cathytoo

Meadow...this story gets more and more horrific. I am so very sorry for everyone involved in this tragedy.

ALHusband

Terrible terrible story Meadow. My condolences. A good friend of ours was recently diagnosed with an extremely aggressive, terminal brain tumor. He's holding his own. But what makes the story worse is just two weeks ago, his son, who has Downs' Syndrome, was diagnosed with Leukemia. We often hear the old statement, "God doesn't give us more than we can handle" but stories like these can shake our belief in that. But what solidifies that belief for us once again is when we DO come out on the other side of these tunnels. Everyone in here has been in a dark tunnel at some point or they probably wouldn't be here. We ALL came out on the other side. Your doctor's family will. Our friend's family will. So it's true...we CAN handle it! Not always easy...but we CAN...and DO!

Luvmydobies

Meadow you're in my thoughts and prayers as well as your doctor's family. Same goes for you ALHusband. Prayers for the family of that man! You're right that God is not supposed to give us more than we can handle and I truly believe that. I saw something on the internet once that said sometimes he gives us these heavy issues to bring us back to Him. I'm not saying that's what I believe but it's just another perspective. I'm so sorry to hear of these incidents though. May God comfort these folks in a way only He knows how to do

TulipsAndDaffodils

Oh Meadow, that's so terrible. I am so sorry for his family, friends, other patients, and you. I would be devastated to lose my caring MO under such tragic circumstances (or any circumstances, actually). So, so sorry.

Cocker,you are always such a trooper. I'm sorry you have to go through this!

All the newbies, and everyone struggling, I'm send you best thoughts. Those doing well--hooray, and thanks for letting us know! It is so encouraging.

Tulips

Cocker, I'm also so sorry for what you are going through. You are clearly a trooper, and will heal, but I'm sorry you have to go through this.qq

Meadow

Thank you all for your support. Thank you Al, yes, I will come out on the other side. Thanks for the reminder and support

Triplegirl

So sorry to hear Meadow.  What a tragedy. 

Just an update.  I had my double mastectomy on Monday.  I met with my surgeon today with the pathology reports and to check on my incision. I didn't get a complete PCR so she didn't want to go into my residual at all....ugh...this is what the pathology report said.  "Residual tumor size estimated at <2 cm composed of multiple 2-3 mm foci over the 2 cm region and approx. 10% tumor cellularity.  Ki-67 was 35%-High.

Does anyone know what that really means.  She wants me to wait and talk to the onocologist but I don't see her for 3 weeks.  Ugh...I just wanted to know if that was close to PCR and she wouldn't tell me....

Any info would help....

Thanks, Janice

LoveMyVizsla

Triplegirl, this might help some. http://www.breastcancer.org/cms_files/47/Breastcan...

• Ki-67: Ki-67 is a protein in cells that increases as they prepare to divide into new cells. A staining process can measure the percentage of tumor cells that are positive for Ki-67. The more positive cells there are, the more quickly they are dividing and forming new cells. In breast cancer, a result of less than 10% is considered low, 10-20% borderline, and high if more than 20%.

Although the S-phase fraction and Ki-67 level may provide you and your doctor with useful information, experts don't yet agree on how to use the results when making treatment decisions. Therefore, not all doctors order these tests routinely, so they may not appear in your pathology report. The other results in your report will be much more important in making informed choices. (If you decide to have an Oncotype DX test to check the likelihood of cancer coming back and whether you could benefit from chemotherapy, Ki-67 will be included in that panel of testing.)

cellularity

[sel″u-lar´ĭ-te]

the state of a tissue or other mass as regards the number of its constituent cells.

10% sounds like a low number to me.

Meadow

Triplegirl, how are you feeling after your surgery? Do you have support at home during these first few days? Hoping you are resting well, and feeling better every day.

Valstim52

Triplegirl, how are you feeling? Your MO will explain more to you hopefully. It did shrink though correct? Are rads scheduled for you?

Cathytoo

Did anyone here do CT instead of ACT?

ScotBird

Meadow so sorry about your news.

Triple I don't know what it all means, and I am hoping that you are not going to worry too much until you see the oncology expert who will be able to answer all the questions. Waiting is so annoying, could you try to bring the appointment forward a bit? I hope the healing is going well, that you are getting plenty of rest and are not too uncomfortable. Sending lots of love to you. XX

greenae

Meadow, I am so sorry to hear about your Onc and his family. Ugh, so sad.

Triple, I hope you're recovering quicklyand uneventfully, and will soon have an explanation and plan. It sure sounds like it shrunk, and that's good news. And I am hoping for you to get more when you see your docs.

Cathytoo, I did TC last year, and just had a follow-up, and am feeling Good.

Cocker, oh no! I sure hope you are on the mend. I wish I could help speed your recovery. We Need You! You have been so helpful and strong for many of us... Feel better sooner!

I am not on here so much, but trying to catch up. I am sending good thoughts to all still in treatment and a shout out to all of my TN sisters, (and bros!).

It's super-hot here in NY, trying to stay cool, keep busy,and live in the moment. You all have been so helpful and supportive, thank you for always being here.

Hugs!

Arlene

LoveMyVizsla

Can I ask, how many rad treatments did you have? It's still 2 months away for me, but I'm getting a tad nervous.

Shopgal2

triplegirl hope your recovery is smooth. And esp hope your team explains your results and next steps in treatment

Luvmyvizsla I had 30 whole breast rads. It went by quickly as I went back to work 2 weeks into rads. Oh yeah and it seemed like a never ending version of the movie Groundhog Day. I did burn and have skin breakdown under my breast from the skin to skin contact.

Valstim52

Shopgal2, groundhog day is the perfect explanation for rads. I love it.

Shopgal2

yup. Same stuff different day of the week. Last 2 weeks were tough as I got really tired with just going back to work ft and my skin starting to break down. I am larger breast size and over 40 so age and gravity make the "girls" lay on my ribcage thus the skin to skin contact and breakdown from the burns. Now 4 1/2 months post rads and the skin looks great but def a tougher boob and a lot of radiation fibrosis. Thankfully exercise and now weights help loosen up the stiffness.

Triplegirl

Thanks everyone for your encouragement and help.  I am hoping to get my appointment with my oncologist moved up from August but she's out on vacation until next Wednesday.  My surgeon is still debating about radiation so not sure about that yet either.  I am trying to find the formula for the RCB 0-4 test as my pathologist said if I could find it and send it to him he would do it for me.  I won't see the surgeon again for 2 weeks and she didn't want to explain anything other than I wasn't PCR.  My surgeon then mentioned the pathologist report said I was 100% P53 and started talking about my ovaries...I was too upset about my breasts so I don't even know what that's about.  I already know the most my oncologist will do would be Xeloda and no more chemo.  She had told me that a month ago. Any help or more infor from anyone would be helpful as I await info from the drs.  I'm calling the nurse tomorrow to see about taking out my drains.  The dr. said the nurse would do it.  At least that is progress...kind of....

Thanks again for your support....I really don't know what I would do without all of your support and kind words.

Janice

Curlyq1974

Triplegirl - I'm sorry to hear you didn't have a PCR, but I wanted to give you a positive thought - I had my surgery before my chemo - so I have no idea if my CA would have responded to the chemo at all. At least you know that you have done everything you can, and the tumor has been removed. As for the P53 - my hysterectomy was the best part of this deal. No more trying to schedule vacations around a period, no more period... it is lovely, I must say!

LoveMyVizsla I had 32 rounds of radiation. 26 whole breast and 6 boosts. I HATED RADIATION! I don't want to scare you and I don't want to be a Debbie downer but I'm being real. My treatment involved having an inch of wet towels placed on my chest, in a freezing cold room, with my hands above my head... and if that isn't enough fun, then my TE started to move which caused issues lining up the machine - not to mention the Sharpie markings I had on my body that my husband had to touch-up every time I showered. And my skin broke down. I bought a supersized package of men's wife-beater t-shirts because I would slather on the lotion to keep the skin moist. The t-shirts protected my clothing from being ruined by the lotion. My larynx burnt, so I couldn't swallow - and when I say I couldn't swallow - it was like the WORST sore throat EVER!! I know everyone is different, but my rads made my chemo look like a walk in the park. My advice to anyone going thru radiation - ask for creams, the bandages and the stuff for your throat. Don't be skimpy with any of it... but make sure to ask or they won't give it to you. With all that said, my rads were two years ago, and treatment has changed significantly in two years, so your experience may be totally different.

Hugs to all! Janet

Cathytoo

POSITIVE RADIATION EXPERIENCE...just read the post above mine which details a horrific experience with radiation treatment. Not to be argumentative or create drama, but what is the purpose to paint such a scary picture that IS NOT THE SAME FOR EVERYONE. Interesting that it begins "don't want to scare you" and then goes on to be REALLY SCARY. IT'S JUST NOT THE RIGHT THING TO DO. I have four more treatments and have had NO SKIN ISSUES. Of course, it's not fun lying on that table every day in an uncomfortable position, but hopefully it will SAVE OUR LIVES. Sorry for the rant, but that post really got under my NOT BURNED SKIN... LOL

Curlyq1974

I am sorry I upset you Cathytoo. It was not my intention to hurt anyone or offend anyone. And I thought long and hard before I posted it, but I posted it because I wished that someone, anyone, would have warned me that it isn't all sunshine and roses. I was being honest. And as I said, treatment has changed a lot since my diagnosis. Hope you forgive me and don't think ill of me.

~Janet

LifeAloft

Hi all, I've been waiting, not so patiently, for my final pathology report, and of course I missed my surgeons call today. She left me a confusing message. First she said "good news, all clear", then she said "little, if any cancer left, nothing to worry about, overall great results". So I'm guessing that I didn't get a pcr. Very confused by the "little, if any" part, it's either there or it's not.It was too late to call the office to clarify, so I'll just drive myself crazy til morning.

Valstim52

LifeAloft, I'd take the little if any, because that means they were able to cut what they saw out. Not everyone gets PCR that's what rads are for or hormone therapy.

Rads, are now down to 20 minutes in and out. No more bolus. My skin does not look great but the good thing is it feels alright. I use the creams and cabbage leaves, but other than my sometimes emotional mental state, I can now say i'm in a good rythem and it will soon be over before I know it.

JAN69

Regarding Radiation experiences: As is frequently said, everyone is different. My radiation was no walk in the park, as some ladies have labeled their experience. Nor was mine as bad as Janet's. But I was in bad enough shape for the RO to give me a week off near the end of the 6 weeks. I believe we are better served when we are well informed. All experiences are real and we should support everyone going thru the treatment.

Best wishes to all, Jan

TNpotato

Hey all, I'm a n00b who has lurked a bit but never posted... until today! I'm feeling pretty low, and if anyone can tell me "Been there! Done that!" it would mean the world to me!

I was diagnosed with triple negative Stage 3a (grade 3) breast cancer in March (1 tumor on right side, less than 1cm, but four internal mammary nodes lit up during my PET). My team recommended neo-adj. chemo and I jumped to get started asap after reading how quickly grade 3 can grow. I finished AC+T at end of June. Was so excited, my team has been so wonderful at Virginia Mason, helped me thru SE issues and I was pumped to get this BLASTED PIECE OF gǒushǐ OUT!!

Well I had my follow-up PET this past Monday and it wasn't very good. The nodes look for the most part unchanged (my tumor never appeared on the PET from the beginning cause it's small). My team has some members on vacay ("it's summer!") and they want to biopsy one of the nodes this Friday so I'm "ON HOLD" with a plan of action until early next week. (Going crazy waiting as well...)

My MO has already mentioned Xeloda, which gave me some hope as I've heard some good things about it. But I'm scared. Plus, I'm dealing with pain in the node area as well. I'd been able to manage with ibuprofen alone but now I'm having some break-thru pain. #$%%$#* cancer!!!

Triplegirl - Have you had any genetic testing done? I'm going to have to have my ovaries out at some point. I'm BRIP1 positive, which means I'm at a high risk for ovarian cancer as well. I know how you feel - it's enough dealing with the breast cancer! Jeez! Lemme catch my breath here!