Calling all TNs

hawkvand

I did see the inbox message now. I’m still learning how to navigate the site. Thanks for dropping some names at me. I think I’m going to call my insurance Monday and see if they’ll reimburse for a second op with anyone. If not I’ll at least do a second op with Melinda telli’s group. That seems like an attractive option that isn’t as cost prohibitive. My insurance said they’d cover as many opinions as I wanted but I think the online and phone stuff may be weird to code. I may call MD Anderson again too and see if they’ve changed their teleheath policy at all. It seems like with everything going on that they’d make adjustments.

I’m definitely planning on being a squeaky wheel. My question list is quite impressive. You’ve all given me a lot more things to bring up. Thanks so much for your encouragement and experience with all of this. I think by the end of this mess I’m going to be an expert at making phone calls.

Beesy_The_Other_One

Rebecca, wow, what a story you have. I've been PM'ing with Hawkvand and have written my MO at MD Anderson to try to get them to look at her pathology (she was all set to get a second opinion there pre-Covid). I specifically inquired about adding Carboplatin at the end of Taxol.

I have always known that it was possible to get breast cancer post-mastectomy because they can't remove all our breast tissue. But they remove the ducts, and it blows my mind to think of ductal cancer growing without ducts.

Hawkvand, there are some around here who might call me an "over-treater," but in your case I'd fight to do radiation. I had no choice because the tumor was growing into the nipple, but for me it was the easiest part of treatment, by far.

Rebecca, I am sure you miss your sister every day, but she would be so proud of you for how you fought this. It thrills me to know you ended up with an MO who is your hero.

SoulShine1969

Hawkvand, I hope everything is moving along with your treatment plan and tumor board. You're in my thoughts and prayers. I love that the Beesy and Santa Barbara are helping you out.

Beesy, Thank you so much for your kind words about my sister. Yes, she would be proud. And even though she wasn't physically with me her spirit was fighting right along side me every step of the way. Crying and singing songs just like we did together during her fight.

I attribute getting IDC to having NS Mastectomy. I didn't want to keep my nipples but my PS dismissed my concerns and I'm ashamed to say I didn't stand my ground. Needless to say I have since changed Plastic Surgeons. They can say all they want that there is no increased incidence of developing cancer in NS, I'm the proof that there is.

Bless you for contacting MD Anderson for Hawkvand, that is so kind of you. We all need to look out for each other.

Hugs,

Rebecca

hawkvand

thanks for the positive thoughts. I feel very lucky and humbled that everyone has been so amazingly helpful. I never thought strangers would care so much. I’m waiting on Stanford to call me back to set up a telehealth consult for a second opinion/chart review and hoping beesy can work some magic with MD. I tried again today and got nowhere again. I’m glad you mentioned having ns vs full mastectomy. I’m on the fence about it still.

I hope I can be as helpful and supportive to others in the future as you have all been to me.

SoulShine1969

hawkvand-

I’m glad to hear that things are going in a good direction. Hopefully soon you’ll have more answers. We’re all here for you.

hugs,

Rebecca

Beesy_The_Other_One

When I was first diagnosed, I was not in the frame of mind to read much (I knew quite a bit about breast cancer because my mother had it in the late 90's and read voraciously then). Once I was about to start chemo, I found this site searching for methods to reduce neuropathy with Taxotere because I had a friend years ago who had terrible problems with Taxol. I learned about the practice of icing and a whole lot more! I never did participate during chemo, but boy did I read! I read the Triple Positive thread from beginning to end one night when I could not sleep because of steroids. Rebecca, I always think it's worth mentioning things like the nipple sparing mastectomy stats for those who might be reading this in the future--you just don't know who it might help. One day, a woman who can't sleep might bump into this and think to question her PS who is insisting on sparing nipples.

I haven't heard back from my MO yet, but I'm hopeful and will let you know as soon as I do!

santabarbarian

We TNs stick together!! There are so many wonderful TNBC sisters on this site. It is really important to hear from people who have been there, and who have had successful treatments and great outcomes. We all got help from women who walked this path before we did.

When you get through this baloney, you will help the newly diagnosed people with your knowledge and experience too.

InspiredbyDolce

Hi there ... hello from Debra! Sending you all love, Hi Adagio, Sylvia, Peggy Sull, LuvtheDobies, Forward66, and ALHusband, BanR, and many others, and the new members.

Much love and healthy vibes ... tons of prayers and warm hugs, even when not posting often. Always in my heart.

XOXO,

Debra

adagio

Hi Debra - so lovely to hear from you and to know that you are doing so well. Do you still eat the dark chocolate? For some odd reason that is something I remember about you. We are all surely in uncertain, tough, challenging times right now - and I have no doubt that our cancer journey can help us see this covid 19 through as well. Warm thoughts to all our cancer friends. Stay safe.

sylviaexmouthuk

Hello Debra,

You are someone I shall never forget.You were such a regular poster.It was so good to hear from you.

I was glad to know all is well with you.

I am nearing 15 years since diagnosis and have been fine.

I have also been eating 100 percent dark chocolate for many years.

Keep well

Love

Sylvia xxx

anotherNYCGirl

Hi to all the old friends and newbies here!

100% dark chocolate?? Is it sweet at all??

I hope everyone is doing well and catching up on old movies, tv shows and good books during this time of isolation. I know that my house should be neat and immaculate with so much time on my hands, but.....

STAY WELL everyone!

santabarbarian

Haha, I did a zoom exercise class today and had a small struggle finding a place to put my camera that looked really neat in the background!

adagio

Hi another NYC girl - in reference to dark chocolate - I am not as brave as Sylvia doing the 100% - I go for 80% which is quite edible and the great thing about it is that it does not want you craving more than just a few squares LOL

anotherNYCGirl

santa, - I understand COMPLETELY!

adagio, - thanks, - i'll try it!

VL22

Hi all! I haven’t been here in awhile. Today is my 48th birthday and it was 3 years ago today that I was diagnosed. It is so hard to believe. I cherish every day and I am so thankful for the support I got here.

To those just starting this horrible journey or in the trenches - I am in your pocket. I never thought I would have a day when I didn’t think about cancer, but I do have them now. Sometimes I just can’t believe that it was me who endured so much - we are really so strong.

I just feel like I was holding my breath until I got to the three year mark.

santabarbarian

VL22 I am so happy for you!! Cheers!!

VLH

Happy Belated Birthday, VL22!

Three years is an important milestone. Congratulations!

Lyn

LoveMyVizsla

Happy Birthday and 3 year mark, VL22!

HolgaGirl

Hi all! I just had my first post-treatment mammogram and I'm happy to say it was clear. Still have to talk to the MO about it on Monday, but i didn't realize how much I was dreading it until I had a good cry afterwards.

I have developed a bit of cording in my right arm behind the lymph node incision, along with some fluid retention in the armpit. PT and home exercises should address this; I'm determined to fix it!

I have really unruly, shaggy, short curly hair - not sure what to do about that though, other than just waiting it out!

Gamb

HolaGirl, I had my physical chest and arm pit exam today along with blood work, everything was good, and it was such a relief to me also. I'm TN also and I too didnt realize how emotional I would be. All this mental crap wears me down...lol here is to better days

Maryjv

Great news ladies!! Very inspirational! I had blood work on Monday (first time post chemo and surgery) and I’m sure scans to follow! Also dealing with cording and now swelling on right hand!! Will ask about PT for sure!

Mistiferlyn

It's so nice to have this site with people who totally get it. I was wondering of anyone that's survived had lymphovascular invasion. My initial biopsy showed none but after my mastectomy, which was march 24th, it showed it. I had clear margins, negative lymph nodes and tumor went from 2.5 cm to 0.6 mm. I have been trying not to focus on a reaccurance or metastasis but it's hard. My PET scan prior was clean but I know that doesn't predict the future. I have a friend who passed a year ago at age 45 from TNBC that metastasized to her lungs and brain so I'm very nervous. Thank you all, you are all amazing survivors..and to you just starting best of luck.

santabarbarian

Statistically speaking most TNBC recurrences happen fast, within the first 3 years. It's normal to have anxiety about recurrence. Hopefully the worry will fade as years pass, because your odds will get lower.

My MO told me the big factor is not stage as much as "does your tumor respond to chemo?" -- yours did!

I am have one more year till I get to three. I manage my anxiety by sticking to a good exercise and diet program, which are factors within my control. I do self exams and I am attentive. i hope to have left this BS in the rearview -- I will feel better in another year!

Mistiferlyn

Thank you Santabarbarin for your reply. I did not have complete PCR but my tumor went from 3cm to 0.6 mm so it was almost gone. They said it was a good response. I have been exercising and focusing on eating better.

Question, do you get yearly PET scans? I would like to just to be safe but my Dr says they will only do it of I have symptoms. If I have symptoms I feel it's too late. Just wonder what others do.

I truly appreciate your understanding. It's nice to talk to others who have been through it and understand. Best of luck to you for continued health.

santabarbarian

My doc said the same. He also he'd give me a MRI if I were panicking but he advised against it, and I am not panicking. I am getting annual mammo and US, and get breast exam from BS-- staggered. My breasts are not dense, easy to image. Might feel differently if I had tricky breasts.

Sugar77

Hi ladies - I'm a 10+ year survivor of TNBC. My oncologist always told me that it's front loaded so if it's coming back, I'll do so in the first few years. Also, keep in mind chemo is very effective for TN because the cells are fast growing. All the best!

sylviaexmouthuk

Hello Sugar 77,

I was looking at the thread and I recognised your name instantly and I could picture your photograph even before i saw it again and I remembered that you were from Canada.

I just wanted to say congratulations on your ten years plus since diagnosis.

I shall be a fifteen year survivor on June 20th this year, just a few weeks to go.

Thinking of you and sending best wishes.

Sylvia xxxx

Meow0369

Hi TN's, I just got back from my Onco apt for my 6 month checkup and he said that everything is fine except for my while blood count. He said it's low a 3.7 and wants me to get back to him if something changes. I asked like what do I watch for and didn't get a good answer. I wanted to know specifics. He said that with strong chemo I was given, leukemia could happen.off guard I looked up WBC and it talks about Luekopenia. now I can't remember if it was Leukopenia or Leukemia bc I was off guard. We get chemo to rid cancer and have the chance of getting another kind of cancer. My question to you all is, is there anyone that has gone through something like this? If so, what did your Dr. have you do? What would you know for peace of mind ? Now that I am thinking, I may want to have my blood work retested. I could swear that this has happened in the past or at one of my apts and my WBC came back fine. I think it's the way he said it or I'm just concerned for nothing. He also said that bc I am an anxious person he doesn't want me to worry, which is a total contradiction bc I am supposed to be very concern, right!??

santabarbarian

You might want to make sure you are taking the proper supplements which support making WBC... You can ask a naturopathic MD what they would recommend. I know selenium and zinc are on the list. Hyperbaric oxygen is an overall blood and bone marrow booster but not sure about WBC specifically. I hope it resolves soon!

MountainMia

Meow, sorry for this blood count worry. I got to 6 months past chemo, things had been fine, and then my blood counts were all messed up, too. I'd had a very bad cold, and then another cold a couple weeks later, fell and hit my head. That's when they did the blood tests and found things were amiss. But then I had my regular, annual exam with PCP a month later, regular blood tests with that, and everything was okay again.

SO, I'd say don't worry too much about it for now. Ask your doc if you can have follow-up blood tests in, say, 3 months. Until then, just focus on doing your basic healthy things -- good quality, balanced diet, regular exercise, good sleep.