Anyone want to sit and wait with me?
Hi Friends,
I finished chemo on June 21. Had a lumpectomy a little over a week ago. I felt like I was about to start moving on with nothing left but radiation and then all the pills that come after, but when I saw my oncologist at my post op, she told me she was not happy with my path report because it appears as though my cancer did not really react at all to all the chemo and pre-surgery treatments. This is hugely disappointing obviously, and makes me worry about any rogue cells that maybe didn’t get killed off.
On top of that, I went to my surgeon later in the same day. I figured I would at least get good news from her, because the oncologist had told me that there were clean margins and they got everything out. But she immediately came in and said she thought I would need a mastectomy because there were three spots of cancer in the excised tissue, and not just the one that they saw on imaging. She’s worried if those spots didn’t show up on imaging that there may be more. My oncologist did not seem worried about that part in the morning, so I am so confused.
They are not meeting until July 31 to discuss my case with the tumor board, and I have an appointment later that day to find out their opinions on everything. That’s over a week away!
As we all know, waiting is the very worst part. I thought I was done with it, but here I am again. So, I hate doing it by myself. Does anyone want to “sit” and wait with me? Please share your worries with us while you wait for whichever results or opinion you are waiting for at the moment. It’s easier to wait together than alone. I hope some of you will join me here. ![]()
Comments
-
Colleen, just dropping by your Waiting Room to say hi and congratulate you on the good idea.
I'm not waiting for anything in particular just now, but Ive done my share of waiting and I know how neat it would have been to have a place like this.
I can't help noticing the comfy chairs, all velvety, and those fluffy pillows, and oooh, the coffe table made of ancient wood, and the fresh wildflowers. While I'm here I'll grab a mocha latte from your bar, and I've brought some cashew nuts for your guests.
I'll be thinking of you, and dropping by for any news, I sure hope for the best possible news.
See ya!
-
Hey oxygen,
Thanks for stopping by! So glad you like the furnishings. And we’re thankful for the snacks! Come by anytime!

-
Waiting is the worst Coleen! {HUGS} What a fantastic idea to wait together. Question, wouldn't Rads take care of any stray cells left in the breast? Hoping that all will be ok. 💞
My wait is long, I have a CT scheduled in November to check my lung. I am hoping the spot is gone or the same as the previous CT.
For me I spend my days with the twins and looking for ways to improve my energy levels and combat this new nausea that has developed. Yay cancer!
I am leaving quilts for the chili days or to just curl up with. A few paperbacks as well... whoo couldn't use a good book to get lost in?! 😉
-
Hey, Colleen. I'm not waiting on any tests right now, but I'm happy to keep you company as someone who knows how scary it is, and has gone through it to the other side of active treatment. On the entertainment system in your waiting room, you might want to watch or listen to some Wanda Sykes, Tig Notaro, and Melissa Etheridge. They all got through it, too.
-
Hey vamp, I guess I am worried about the possibility of cells that have already left the breast area. But I did have 4 AC treatments at the beginning, so surely that did something?! Man, November is super long! I’m so sorry for your wait...it sounds like you’ve got some good ways of coping. I have a 10 year-old and an almost-6 year-old, so I try really hard to stay on top of the anxiety for them and not get too anxious. Quilts and paperbacks are the perfect addition! Thank you!!

Ksusan, thanks so much for coming by to lend your support! Those will definitely go on the tv!

-
Colleen:
Sorry to hear the news. I see you are HER2 positive but was this confirmed with FISH? There was another member on here who had a false positive with IHC and was actually HER2 negative which is why her cancer wasn't responding to the HER2 positive protocol.
I don't remember who it was but she changed centers and the new oncologist figured out she was HER2 negative and put her on a different chemotherapy which her cancer responded to.
-
hey WC3,
My oncologist said that I had the highest score for HER2 (3 I think?) which meant that I was very HER2+ so there was no need to worry about a false positive. I have still written down the question to ask again tho, just to be sure. Thanks for the thought!
-
ColleenS80-
I’m earlier along in my waiting game, but I’ll join you. I’m waiting for my bmx surgery date and stressing about my final pathology since my MRI was unclear of my huge tumor size and possible node involvement. I also have a 10 year old and 7 year old and just celebrated my 40th. Still shell-shocked even though this all started a month ago..
-
Colleen,
At what sort of facility have you been receiving tx? Have you felt confidence in your MO up to now? Even as you wait for their tumor board to meet, you can still arrange for a second opinion elsewhere. My tx was somewhat similar to yours, but they kept palpating the area to check for response during chemo. Me, at this juncture I would absolutely want a second opinion asap, even if I had to pay out of pocket.
I'd want to know if two independent expert sources tell me essentially the same thing. It is essential that you receive the benefit of the best possible advice asap.
Don't worry about seeming like a difficult patient, go for what you need, if I learned anything during tx it was to stay strong even when I felt like mush and to (politely) stand up for what I thought was right.
I notice that your waiting room has an adjacent gym, great, those bench pressing machines are top of the line, I'll go try them.
-
KK, I’m so sorry! I think the waiting is the worst because of the uncertainty. You feel like you can’t move on with life, one way or another, because you don’t have any final answers. I’m realizing that feeing of uncertainty will probably be present for us forever now, in some form. It’s just something we’ll have to learn to live with I guess. I hope I can use it to teach me to live in the moment and appreciate thingsmore. At least, that’s what I think when I’m feeing positive. Then there are the days I want to tell everyone to screw off and go lie in my bed all day.

Big hugs to you as you wait.

-
oxygen,
I have felt confidence in my doctors this far but have wondered about a second opinion since things have become more complicated. My onc is actually getting in touch with a colleague at Vanderbilt to get a second opinion herself on why I didn’t seem to respond. So that comforts me, but I also wonder if I should still just go myself. It feels overwhelming to figure that out, but I know I may have to try.
Enjoy the gym

-
Colleen ,
Yes... I am waiting right along with you. I am waiting to see if I start Chemo or radiation in the next few weeks. My MO has taken my case to the tumor board 2x. He also had me go for consults with two very experienced MOs that specialize in BC. I see my MO this week to discuss it all. Waiting just sucks! Ooooh.. a mocha latte, comfy chair and a good book ! I may never leave ! 🤗Cyn
-
welcome cyn!
So sorry you have to join us, but glad we can wait together. Big hugs as you wait for answers and what comes next. Please keep us updated. In the meantime, enjoyyour comfy spot with drink and good book!

-
KK I forgot to say, please be sure as well to keep us updated
-
Cyn - did you have an Oncotype test done? It was a deciding factor for me with the Chemo decision. My score was somewhat low 21, so I opted out, did Rads and now Tamoxifen.
A gym - oh the dream of having the energy to use something, anything in there!!
-
A very simple but often helpful page you can look at on your phone while you wait: www.calm.com/breathe
-
What have you got there now, Colleen. A 24-hour bar, with iced teas and juices and frappes and spring waters...Oh, you shouldn't have [she says as she grabs a 32 oz berry smoothie and a handful of pretzels ].
It's really cozy and relaxing in here.
Love the breathing page that I see on the 48 in. monitor.
Gotta say, Vampeyes, after one of these special smoothies, you'll have energy like Popeye.
I think I'll call it a night. Good seeing everyone, good night.
-
ksusan thanks for the page!
Oxygen thanks for stopping in, hope you enjoyed your relaxation and refreshments

-
There's meditative breathing time, and then there's the big dance. Party in the waiting room!
-
Hi ColleenS80! I'll wait with you. Im so sorry youre going through this. Im still waiting for a consultation with the surgeon July 31st. It will be 4 wks since i did my mammo and sono. I'm a mammo tech so imagine my surprise when a spiculated mass with microcalcifications popped up on my left breast. Oh damn i thought! I don't need a bx to tell me thats cancer! In 16 years ive seen more just like that than i can count! And the sono and radiologist just affirmed what i think. I pray that im wrong! About 4 percent i think of spiculated masses with microcalcifications are benign. I hope to be un that 4 percent. Me and my dr tried to feel this thing and couldn't which i fektngood about..but that tissue there has changed and its easy to feel which has me worried that its fast growing. The radiologist that read my exam admitted his partner missed it on my last mam 18 months ago. It was maybe 2mm and was only architectural distortion. I have some complicating health issues so i have no idea when ill have a bx or surgery. I have to be off blood thinners for 7 days before any procedure. Ive has a small stroke. I would like bmx and flap recon. Strong fam hx mom and sister at 39. Brother waiting on prostate bx. Psa 6+. I'm the only one tested and was neg for the gene but that was 20 years ago. My advice to you about a second opinion is find a dr nit connected to your dr in any way. That's the only way you'll get an opinion free of pressure or politics between drs. Drs cover for each other. I've seen alot in my 16 yrs and im not super trusting of drs in general. Ive always agreed with my patients..waiting is the worst. I never really knew what that meant!
-
I'm with you.i don't trust doctors. For a variety of reasons.
-
I''ll wait with y'all. Waiting is the worst. I have partial pathology results on a huge mass under my collarbone, which is a metastatic recurrence of BC from 20 years ago.
Now I'm waiting to get an initial appointment at a cancer center.
It seems to have taken forever from pointing out the lump to my family doctor, to waiting for an ultrasound appt, waiting for the ultrasound report, waiting for a core needle biopsy to be scheduled, getting the core biopsy done, waiting for the path report, now waiting for the rest of the pathology report and my referral to a regional cancer center.
It's all waiting and anxiety and more waiting and anxiety for over a month, punctuated by awful procedures and ghastly results. And lots of waiting lies ahead with future tests, diagnoses, treatment -- oh yay.
And in the meanwhile I feel a strange pinching in my right rib and worry about bone mets.
This waiting room sucks! just kidding...lol Well, actually the waiting does suck. But thank you for the waiting room ColleenS80.
Thanks ksusan for the calming breathes website--I like it, I just breathed it's habit-forming lol. Oh, I found the pretzels, but now I got crumbs all over the waiting room floor sorryyy
What helps me a bit with waiting: podcasts, watching the Tour de France, DVR of The First 48, audiobook of Maggie Gyllenhall reading Anna Karenina (it's long so it should last me through many a long wait)....
Is there a prize for the gal who has to wait the longest?
Shout out to Jadedjo! waving...
cheers

Amica
-
Oh, I found the pretzels, but now I got crumbs all over the waiting room floor sorryyy
*waves hand dismissively** Don't worry, the hunky pool boy* will clean that up. He's paid well and happy to have a tangible way to show he loves and supports you.
*For some of us, the pool girl will be by later this afternoon.
-
Friends,
So sorry to be a downer in the waiting room today. I have been on the edge of panic all day. Can do nothing but lie on the couch and try not to go insane. Read way too much last night and this morning and am convinced I have a very poor prognosis now that I did not respond to my neoadjuvant therapy. Read article after article that talked about the poor survival rates of women who are HER2+ and do not respond to herceptin. I am so scared and sad
-
Oh Colleen, stop that googling! How do they know you didn't respond well? All the cancer is gone from the breast, correct? So maybe an MRI to make sure it has not spread, get you on Tamoxifen to help stop that estrogen. Are there any other treatments for Her2 positive?
Here's a picture of my dream pool boy to bring a smile to you. {HUGS}

love him. yummy! lol
-
love the pool boy vamp

I had treatment before surgery, and in that case they can compare your initial stats with the stats after surgery. My tumor didn’t appear to have shrunk at all, and two of my lymph nodes were full of cancer. This is after I had been through 18 weeks of chemo and 3 or 4 treatments of herceptin. So it looks like the cancer was not affected by all of that. And they say if you are HER2+ and do not respond to pre-surgery treatment, your odds are way worse. I remember one stat being in the 90% range if you had good response; down to around 45-50 if you didn’t.
-
Colleen-I'm so sorry you had a terrible night that has rolled over into today. I wish I was one of those people who didn't spend so much time researching every word in every report to try to glean additional information, but here we are, stressing about things we have read and feeling immobilized because there is nothing we can do about it.
Amica- I'm so sorry that after all of this time this shitty disease is re-interrupting your life. I hope this doesn't come out wrong or that I break some kind of cancer decorum rule (I'm new here) but I look at your signature and it looks like my stats and if someone told me I would have 20 years ahead of me before a recurrence I would cry with joy. I'm so afraid I won't get to see my babies grow up.
I've always been a positive grrl-power kind of woman, and every single thing about this cancer diagnosis has made me aware of one word. Submission. We have to submit to tests, test results, to the unknown, to doctors schedules and timelines, to our bodies being cut up, radiated, poisoned, neutered. submit submit submit. I'm not sure when the fight emotion comes into play but right now I just feel like I am nodding my head ok to whatever anyone says and just trying to get through the day. I finally got my surgery date and now I have just over one week to get my life in order before I get on the scary part of the ride. Everything up until that point is pretty much just me standing in line watching what is in front of me and trying not to freak out. Too much negativity??? Sooooo, I'm pretty certain I am bringing some fruity cocktails to this waiting room because I certainly could go for a drink right about now.....
-
KK2018...I've been following your story from a previous post. I'm so sorry for your dx. I was going through something similar- scared & worried- but my US today showed everything is ok. I'm fine. Your line about playing in your kids soccer adults vs kids struck me- I just did the same thing. I will continue to pray for you & all the bc warriors. I have 5 friends who have been battling a year or more and all are thriving and look incredible. Have that fruity drink! Hope your vacation was incredible!
Continued prayers...you've got this
Colleen- continued prayers to you also. Dr. Google can be a scary place- you are not a statistic. You will make your own journey. My great aunt has survived lymph cancer then breast cancer that spread at age 70- she’s now 93
-
Colleen,
Being HER2 positive, I too found it terrorizing to hang around Dr. Google.
Each situation has a unique set of circumstances, and now more than ever, oncologists tailor tx to the individual.
Now, THAT particular oncologist, I have misgivings about, and given the choice, I'd get someone else.
HER2 is tough and there is a reason I sit here with you in this waiting room, even tho nominally I am done with tx. I am waiting for the day when her2 is no longer a Damocles sword hanging up there somewhere.
As I received tx, I came to know some of the great minds in the field, and it is heartening that as we speak they are putting their minds and their souls into outsmarting her2 one variant situation at a time, one patient at a time. Progress is truly happening all the time, in part because effective meds bringo mucho dinero and raise stock values.
Let's see what the Vanderbilt people say, meanwhile, dear Colleen, I see you got busy and hired quite some pool boy. But hey, why only one? Perhaps you could ask him if he has some friends from his gym that he can bring along? We could use some baristas to fix and bring us our drinks poolside.
-
Categories
- All Categories
- 679 Advocacy and Fund-Raising
- 289 Advocacy
- 68 I've Donated to Breastcancer.org in honor of....
- Test
- 322 Walks, Runs and Fundraising Events for Breastcancer.org
- 5.6K Community Connections
- 282 Middle Age 40-60(ish) Years Old With Breast Cancer
- 53 Australians and New Zealanders Affected by Breast Cancer
- 208 Black Women or Men With Breast Cancer
- 684 Canadians Affected by Breast Cancer
- 1.5K Caring for Someone with Breast cancer
- 455 Caring for Someone with Stage IV or Mets
- 260 High Risk of Recurrence or Second Breast Cancer
- 22 International, Non-English Speakers With Breast Cancer
- 16 Latinas/Hispanics With Breast Cancer
- 189 LGBTQA+ With Breast Cancer
- 152 May Their Memory Live On
- 85 Member Matchup & Virtual Support Meetups
- 375 Members by Location
- 291 Older Than 60 Years Old With Breast Cancer
- 177 Singles With Breast Cancer
- 869 Young With Breast Cancer
- 50.4K Connecting With Others Who Have a Similar Diagnosis
- 204 Breast Cancer with Another Diagnosis or Comorbidity
- 4K DCIS (Ductal Carcinoma In Situ)
- 79 DCIS plus HER2-positive Microinvasion
- 529 Genetic Testing
- 2.2K HER2+ (Positive) Breast Cancer
- 1.5K IBC (Inflammatory Breast Cancer)
- 3.4K IDC (Invasive Ductal Carcinoma)
- 1.5K ILC (Invasive Lobular Carcinoma)
- 999 Just Diagnosed With a Recurrence or Metastasis
- 652 LCIS (Lobular Carcinoma In Situ)
- 193 Less Common Types of Breast Cancer
- 252 Male Breast Cancer
- 86 Mixed Type Breast Cancer
- 3.1K Not Diagnosed With a Recurrence or Metastases but Concerned
- 189 Palliative Therapy/Hospice Care
- 488 Second or Third Breast Cancer
- 1.2K Stage I Breast Cancer
- 313 Stage II Breast Cancer
- 3.8K Stage III Breast Cancer
- 2.5K Triple-Negative Breast Cancer
- 13.1K Day-to-Day Matters
- 132 All things COVID-19 or coronavirus
- 87 BCO Free-Cycle: Give or Trade Items Related to Breast Cancer
- 5.9K Clinical Trials, Research News, Podcasts, and Study Results
- 86 Coping with Holidays, Special Days and Anniversaries
- 828 Employment, Insurance, and Other Financial Issues
- 101 Family and Family Planning Matters
- Family Issues for Those Who Have Breast Cancer
- 26 Furry friends
- 1.8K Humor and Games
- 1.6K Mental Health: Because Cancer Doesn't Just Affect Your Breasts
- 706 Recipe Swap for Healthy Living
- 704 Recommend Your Resources
- 171 Sex & Relationship Matters
- 9 The Political Corner
- 874 Working on Your Fitness
- 4.5K Moving On & Finding Inspiration After Breast Cancer
- 394 Bonded by Breast Cancer
- 3.1K Life After Breast Cancer
- 806 Prayers and Spiritual Support
- 285 Who or What Inspires You?
- 28.7K Not Diagnosed But Concerned
- 1K Benign Breast Conditions
- 2.3K High Risk for Breast Cancer
- 18K Not Diagnosed But Worried
- 7.4K Waiting for Test Results
- 603 Site News and Announcements
- 560 Comments, Suggestions, Feature Requests
- 39 Mod Announcements, Breastcancer.org News, Blog Entries, Podcasts
- 4 Survey, Interview and Participant Requests: Need your Help!
- 61.9K Tests, Treatments & Side Effects
- 586 Alternative Medicine
- 255 Bone Health and Bone Loss
- 11.4K Breast Reconstruction
- 7.9K Chemotherapy - Before, During, and After
- 2.7K Complementary and Holistic Medicine and Treatment
- 775 Diagnosed and Waiting for Test Results
- 7.8K Hormonal Therapy - Before, During, and After
- 50 Immunotherapy - Before, During, and After
- 7.4K Just Diagnosed
- 1.4K Living Without Reconstruction After a Mastectomy
- 5.2K Lymphedema
- 3.6K Managing Side Effects of Breast Cancer and Its Treatment
- 591 Pain
- 3.9K Radiation Therapy - Before, During, and After
- 8.4K Surgery - Before, During, and After
- 109 Welcome to Breastcancer.org
- 98 Acknowledging and honoring our Community
- 11 Info & Resources for New Patients & Members From the Team
