Hard Not To Worry

786tex-

We're so sorry you find yourself in this waiting game; it is truly one of the hardest parts. We hope your results end up being benign, but either way, we're here for you! Please keep us posted!

The Mods

Sounds like you are very much in the same place that I am. I know I am trying hard not to worry but when the radiologist tells you that, it is hard not too. Does it run in your family? It doesn't in mine but I guess that doesn't seem to matter anymore.

786tex: No family history on any side. The radiologist told me that the only other thing it could be based on the ultrasound other than a malignancy is granuloma mastitis (which is extremely uncommon - not very encouraging...). Had biopsies taken today...I try to act normal around my husband and toddler but when I am alone I break down and cry. Hang in there!

Logang: Thank you! Did you just have surgery or also radiation and/or meds?

I think the hardest wait for me was the two weeks between diagnostic imaging and biopsy. Could have been a week sooner (I needed several days off any meds that could cause bleeding, like my heart mini-aspirin, celebrex and fish oil), but I already had a continuing legal ed./gig trip booked to New Orleans and Scranton, followed by a Labor Day weekend folk festival whose writers’ rounds I was running). The radiologist said "by all means take that trip--you need those two weeks of normalcy and R&R. The mass isn’t going anywhere.” Those two weeks drove me nuts, because she pointed out the mass to me on the monitor while I was still on the table--that it was jellybean-shaped with irregular borders and wouldn’t compress beneath the ultrasound probe. While I was making the biopsy appointment I voiced my concern, but the nurse-navigator said “it is what it is, don’t make yourself crazy speculating.”

As soon as I got home from the biopsy, I went online and learned 80% of biopsies come back benign, but bubbling just beneath the surface from the time I left the breast center, all through my trip (in the lecture halls, taxis, restaurants, hotel room, streetcars, walking through the Quarter, flights, car, our org’s table at the folk festival--everywhere except on stage) was the thought, “I probably have cancer--the routine mammo report said 'focal asymmetry' that wasn’t there last year or the year before.” Didn’t help when the imaging report came back in my patient portal inbox while I was still in NOLA, the day after my gig: "7mm hypoechoic ill-defined mass, BIRADS category 4b.” I knew that the probability just jumped from 20% up to anywhere between 40 and 60%. The radiologist who did the biopsy (a sweetheart I could easily see myself having drinks or coffee with) reassured me “It’s tiny, you’ll almost certainly keep your breast if you want to, and it’s more likely than not benign.” A day later came my next chapter of unluckily “beating the odds.”

But I had thought the worst it’d be was DCIS--when my gyne’s partner uttered the words “invasive,” “grade 2” and “carcinoma" over the phone, a shockwave seemed to pass through me as if a bomb had gone off silently not far away. “What about hormone and HER2 status?” I asked. “All I can tell you is what I have in front of me,” she replied. “I hope it’s not triple-negative,” I offered. All she could say was “Me too.” My husband, son & I poured flutes of the pink champagne already open in the fridge and toasted, “F**k cancer--kick its ass.” Next morning, my gyne herself called to confirm, but she was able to add it was hormone+ and HER2-, with the largest core sample taken being 9mm long. “That doesn’t mean the tumor is that big, just that the samples, including surrounding tissue for comparison, were. And it’s the most common and treatable kind, and we’re catching it early.” That afternoon I made my appt. with the surgeon and indicated my desired surgery date. From then on in, believe it or not, it got easier. We were given from that point on, a definite time frame for every test result (surgical path report, Oncotype DX, genetic-mutation testing), and every result came in well within that time frame--and because of the portal, in writing without euphemisms, condescension or waffle-words. The surgical path report came back with “1.3cm” (nearly twice as big as on the ultrasound!) as the size--but the report was titled “GOOD NEWS! Your tumor is small, nodes are negative, margins are clean!”

You...will...get...through...this. And at some point, you will go through an entire day without thinking “I have cancer,” (or at least you’ll think, “yeah, yeah, but the world isn’t going to stop spinning just because of that”). And then you will know you’re a survivor.

ChiSAndy: Thank you for sharing your recent story. It seems like there was over a month between the surgery and start of radiation. Is there a reason for spacing the treatments?

I sure do hope you find out today that it is negative. I know exactly what you mean about being afraid about how far it has gone. I feel the same way. I can handle if I have to have a mastectomy but it will be that much harder if it has spread to areas beyond the breast. I wish you the best today and let me know what the result is.

Numb, the usual recommended interval between surgery and radiation or chemo is 4-6 weeks, so that the incisions have time to heal and you can get enough of your strength back. In my case, I had an axillary seroma rupture and leak, necessitating sutures and two more weeks of healing. Timetable: surgery 9/23, seroma burst 10/16, initial radiation CT mapping scan 10/23, radiation simulation 10/29 and seroma suture removal 10/30, and first radiation treatment 11/2. So the interval was still w/in the ballpark, but had my seroma not burst I might have been able to start a week or two sooner.

Numb, my heart goes out to you. I wish you the best of success in your treatment and I am glad you don't have to wait long to get it started. Your good attitude will go a long way in healing. We will be think about you!

I had biopsy Friday. They took from several sites of the mass and it wasn't painful. A bit tender after the anesthesia wore off but I did not need to take pain killers. The radiologist who took the biopsy gave me her cell phone number if I wanted to talk over the weekend (which probably indicates they are pretty certain about the dx). I have bad bad anxiety, constant rapid heartbeat and nauseous. I just pray that it is not too far progressed. Good luck on your biopsy and update us here afterwards.

Heidi - I honestly feel like the waiting is the hardest part. Especially when people tell you not to worry and there is no way you can stop. I did read this today and it helped a little for me even though their problem seems minuscule compared to what you are going through: http://tinybuddha.com/blog/something-good-can-come-from-pain-and-struggle/ (you may read it and find it to be crap and that is okay- I think maybe the point to take away is that life is a journey and our experiences make us who we are or something like that I hope you hear soon!

@heidi I hope you hear back soon. ((hugs))

Dear Seedsally,

Welcome and thanks for posting. We will be thinking of you. Keep us posted. The Mods

No Heidi but they said it had to come out or be treated. Two different doctors said that.

I have ductal carcinoma, grade 3, stage still pending...so scared. MRI and genetic testing will be scheduled before surgery.

Heidi, so sorry for the IDC report. Come here often for support. There are so many sweet and smart women to help you through all of this. It sounds crazy, but it does get easier when your plan is in plan.

Love and support. Brenda