Table 1 Classification of young survival coalition online forum (2009–2019) into parent and child codes

First signs and symptoms

120

16

a. My cancer was picked up by a pain I was having that felt like nursing too

Steps to diagnosis

187.5

25

b. An ultrasound, two biopsies, an MRI and a CT scan later I know that I have a 5.3 cm tumor in my right breast

Healthcare interactions

292.5

39

c. I feel very comfortable with my dr and just hope and pray that he is steering me in the right direction.”

Patient-provider feelings

127.5

17

d. I remember my onc telling me that statistics don’t really matter because I’m only concerned about the outcome of my one case, not all the cases that the statistics are based on

Stage at diagnosis

360

48

e. ER + PR + , HER2 -, BRCA1 & BRCA2 both negative YAY I think.”

First signs and symptoms

8,605

1.5

f. Well I just want to say that if I had not found the lump myself I would probably be stage IV by now. I just happened to be taking a shower one day and while washing I found the lump. It seemed to appear overnight (although I’m sure it didn’t) one day nothing the next day large lump in my left breast. I think anything that discourages women from doing self exams is terrible. I was 34 when I found the lump not old enough to even qualify for a free yearly mammo

Steps to diagnosis

31,640

5.5

g. Found lump myself, was in GP’s office the next day. Was told that it was probably a cyst but gave me a referral for an ultrasound to see if a solid mass. U/S 2 weeks later, tech scanned mass, then started checking my nodes. That’s when I had an idea something was wrong. I was sent for a mammogram immediately, which they compared to my baseline mammo. Radiologist recommended core biopsy. Done 2 days later on a Friday—was told that 80% were benign…Monday—GP’s office called and asked me to come in that day. At that point, I knew it was cancer as they don’t have you come in for benign results

Healthcare interactions

70,145

12.3

h. Lump was tender and I had occasional shooting pains. Was also told by my gyn that cancer does not hurt, but luckily she also wanted to take it seriously, so I got the ultrasound. Since then, another doctor has said that medullary type tumors can hurt and he thinks that may be what I have. This diagnosis has a better prognosis than non-medullary, so since it doesn’t currently make a difference to my treatment choices one way or another, this is what I am choosing to believe. So I welcome the pain!

Patient-provider feelings

32,266

5.6

i. I LOVE MY SURGEON…..he had cleared his appointments (had another doctor in the practice see them) and was waiting to talk to me….came in, sat down with us, and told me it was cancer, but I WOULD get through this and live a long life….I don’t remember much after that….I remember asking “so I shouldn’t loose sleep over this?” and he said “oh, you’re going to loose sleep over this, you wouldn’t be human if you didn’t”….LOVE LOVE LOVE my surgeon. There’s been several times that he’s sat down with me to “talk”, allowing me as much time as I need, despite his very busy schedule. I was his first “young breast cancer patient” (though sadly, not his last) and both he and his nurse say that my case changed how he handles young women with breast lumps

Stage at diagnosis (numbers not filtered)

71,782

12.6

 First signs and symptoms (n = 3,266)

  Self-detected

817

25

j. Actually, I too had a brownish discharge (looked like dried blood) from my right nipple prior to diagnosis. I experienced it for about 3 weeks before making an appt. with my OB/GYN…he completely dismissed it…sent my soon to be husband and me home with a small petri dish and said if you can get anymore bring it in to me. … I know hindsight is 20/20, but I wish my husband and I would have been more diligent in finding out the answer for the nipple discharge…Ah, regardless I now tell my story to anyone that is interested to get the word out that cancer is not always a lump…

  Lump present

1,844

56.5

k. i nursed while i had a 3 cm tumor that i was told was NOTHING. i had found a small lump while 2 mos pregnant and only 9 mm, after an ultrasound and needle biopsy i was told it was nothing and not to worry about it. i let it grow while my daughter grew inside me as well. after she was born she had no problems nursing, even with the 3 cm tumor, my milk was fine and breastfeeding was perfect!!! i did so till after my diagnosis and needed to stop for surgery

  Provider-detected

563

17.2

l. I had a dimpling in my cancer breast (NOT that your is cancer) but my doctor noticed it when I was laying down…not really standing up. My tumor didn’t show up on an ultrasound (my report is all clear) but the lump could be felt

Steps to diagnosis (n = 31,640)

Biopsy

7,368

23.3

m. I was “old” at 42 when I was diagnosed. Eight months after a “clean” mammo (Boy you have dense breasts!) I found the lump and it wasn’t until 3 months later that I had a biopsy done.—I was already Stage IV by the time I was staged. I pushed and pushed for my appointments but I was told that usually lumps are nothing and that if it is cancer it’s been there for years and grows very slowly. Apparently my cancer had never heard that it was supposed to grow slowly…

n

%

Quote

Biomarker test

319

1

n. Ask for a second opinion on your pathology at a lab outside your current hospital. er/pr staining is actually pretty subjective so you want to make sure you’re getting the right percentage. current standard is er/pre positive is considered if you’re 5% or more. and you should get two different numbers—one for er and one for pr… if either is over 5%, then most would rec hormonal therapy. The testing was done at a independant lab outside of the hospital. Pr was completely negative. Her2 was negative. Pr was 1 to 4%

Imaging and clinical exams

21,043

66.5

o. i had several radiologists say that my mri was fine. fortunately my primary radiologist is awesome and aggressive and sent my images to another colleague who suggested a core biopsy. without it they would have missed more DCIS that runs from my chest wall to my nipple

Positive

9,082

36.8

p. My Mom just passed away in January of metastatic breast cancer... Afterwards I realized that I had forgotten to go to the gyno so I made an appt when I got back home. She did the usual breast exam and thought she might have felt something but wasn't convinced. However, given my history (my maternal grandmother died of breast cancer as well) she wanted me to get a mammogram. So I went, continuing to self exam and not feeling anything anymore, I wasn't worried. I had the mammo two weeks ago and they found two "calcification" clusters. They're like the size of a pin head! But now I have to get them biopsied. I can't even begin to tell you how frightened I am. The doctors haven't filled me with hope because of my history, but they rattle off the statistics..."70% chance of it being benign, etc."

Negative

17,337

70.3

q. I am 37 yrs old from California. I was diagnosed with DICS and Invasive breast cancer on December...Summer, I found my lump and was dismiss my former gyno thinking it was only a cyst. She drained it twice but did not send it to pathology. I had a mammogram and ultrasound I was told it was not cancer. Contact gyno again because I felt the lump getting bigger. She insisted that it was a cyst. Informed her that my grandmother had died of breast cancer. She told me not be concerned that it would be a concerned if my mother had cancer. She also told me that no surgeon would touch me. I insisted and finally got a referral to meet with a surgeon. I met with my surgeon in Oct. Finally someone listen to me. She was wonderful and supportive and agreed that it would be removed and send to pathology. My lump was 4.8 cm. Everything happened so fast for me. Had lump removed and was diagnosed. Worst day of my life!!!

Neutral

18,808

76.3

r. Hi...was diagnosed in Novemeber..originally told squamous cell carcinoma of the right breast..very rare..went to cancer center for 2nd opinion..diagnosed IDC right breast...did FNA on left breast.."funny" looking cells. Had right breast mastectomy in December w/SNB (2 sentinel nodes one was actually a cluster of 2..so I guess 3 sentinel nodes) + 6 additional nodes taken.originally told "Clean" also excisional biopsy on left breast - B9. Later told 12 cancer cells found in the 1st of the 2 clustered SN..barely positive but am being treated as lymph node positive. Also had recon w/tissue expanders...last fill in January. Started chemo yesterday..not feeling that bad. Had AC+Avastin...on clinical trial. Will follow 4DD AC+Avastin followed by 4DD Abraxane (Form of Taxol) + Avastin then continue Avastin for 12 more cycles every 3 weeks. Seemed best option as I am triple neg. Not sure yet if I have to do rads. Will schedule implant exchange for July. Should also note that lump 1st felt in July before going on vacation to Hilton Head...had lumps before..had mammos before was always NOTHING..lump did not concern me as no one in my family has had breast cancer..or any other cancer for that matter and that I always had "lumpy" breasts.

Stage 0

5,141

I was dx w/ DCIS. ER/PR+. 1.2cm. no lymph node involvement

Stage 1

3,419

I had surgery to remove stage 1 bc p/g-.

Stage 2-3

3,954

I was diagnosed with Stage 3 ductal carcinoma with node involvement.

Stage 4

5,247

I was newly diagnosed at stage IV with bone mets to the spine.

Invasive (Stages 2 to 4)

5,223

I had an ILC tumor last summer, and I would like to get a roll call of other YSC members who had only ILC tumors

Mental health

–

–

s. Does anyone know if there is a psychiatrist/psychologist that specializes in dealing with cancer patients? I am really starting to fall into a very dark place and I need some help... I too am feeling numb and am withdrawing from my life. I need someone to help me fight this from completely taking over my life, but don't currently have anyone to do so...I really need this because I am beginning to feel like a prisoner of war. I have 1 of 2 choices. Either give up and die or fight and be absolutely miserable, hurt all the time, and generally have a crappy life until the cancer (or the treatment for it..which I think is as bad if not worse than the cancer at times) ultimately drains the life out of me. I don't know how to go on anymore.

Fertility

–

–

t. My surgical oncologist has suggested that I do my chemo first, to hopefully shrink the lump before the lumpectomy. So my boyfriend and I are hoping to harvest eggs before we start chemo. My consultation with the fertility specialist is in January. It feels so far away just to find out what's involved. And then there's the whole process itself. I do have a question for ya. My cancer like yours is hormone receptor positive. I understood my onc to say that getting pregnant would increase my risk of having any precancerous to become cancerous. So we're considering surrogacy.

Menstruation

–

–

u. Somehow I thought that my period would return in May if I didn't have my scheduled Lupron shot in April. Sounded logical to me! Nice and tidy. I had a plan, but alas... It's like crickets chirping around here...not a drop, a sore boob, nothing. A little heavy feeling in the uterus area but I'm sure it's all in my mind...Some neighbors said something about an ovulation kit, I guess in theory of the hopes that I'm ovulating but not menstruating?...Who wants any of that???... I'll just wait for Flo to show. If I were 18 and had never had cancer, this would be a lot easier.

Childrearing

–

–

v. So here's the deal... I'm losing my battle with cancer...My heart break is leaving my son. He's 20, an only child...But if I wasn't here, he wouldn't have made rent this month!!!! And it's stuff like that. I'm not going to be here to help him. He's going to be on his own. He has his father...But his dad rarely ever see's him and lives 7 hours away. I'm really close with my son. We talk everyday, even since he's moved out. The thought of leaving him so early in life

Advocacy

–

–

w. I know SOFT has had a terrible time enrolling women in the numbers needed, for a lot of demographic and other good reasons. I get it. But I'm trying to enroll and can't seem to interest the hospital trials administrator! I spoke with her in person on Tuesday and she offered, half-heartedly, to see if I'm eligible. When I hadn't heard from her, I called her yesterday. She didn't remember who I was or that we met, took my information a second time, and said she wouldn't get to it until next week, though she didn't sound very interested...But this is an important study (not to be obscure: it looks at various hormonal treatments for premenopausal bc patients with ER positive disease-- Tamoxifen alone, ovarian suppression + Tamox, or OS + AI-- information we need!). A couple other national trials in this same category failed because they couldn't enroll enough women. I love the hospital where I've been treated. Their patient care has to be among the best anywhere, but maybe this is the downside: research doesn't seem to be a priority.