Hi guys and thanks to LSLguy and ThelmaLou for your thoughts and advice too.
I’m now really low. After your responses I feel less confidence in my radiologist/imaging place. I am surprised to hear that after a first screening mammogram one should expect to have the radiologist talk to you the same day.
Everything I’d read said not to anticipate getting to chat w/the radiologist, but rather that I’d get a call and/or letter saying whether the test results were normal or whether a follow-up was needed.
As it was, I thought it was pretty fast from the screening mammogram (Friday) to my GP calling me (Saturday) and then talking to the radiologist (Monday). The delay started because she thought it made sense to get the older images so they had something to compare this to. That’s when stuff slowed down while waiting for the other hospital.
I thought it was during the follow-up diagnostic mammogram/sonogram when the radiologist usually will come in after to let you know.
Damn. This place (Iris Cantor Center for Women’s Health) is supposed to be a Center of Excellence. I liked it because it’s all part of the same hospital (New York Presbyterian/Weill Cornell) where my GP and other doctors reside, so they all share the same records and stuff–I felt reassured by the interaction. But if this is subpar treatment I’ll have to rethink this.
Thanks very much for helping me with your own experiences and what I should’ve expected. I really appreciate it! Even though now I’m feeling worse, heh. But forewarned is forearmed.
Most of my girlfriends wait for a letter or a phone call from the places they go to for mammograms.
When I used to go to a regular radiology practice, I got a letter a few days after. For my fateful mammogram, I went to a cancer treatment center, because the radiology practice I had been going to since 1973 had closed when the head of it retired. I met him at his ministorage and got the actual films for the past 40 years. The oldest ones were quite primitive–on xerox paper! I went to the cancer center for my mammogram because in my career as a grant proposal writer, I had worked on one of the grants that funded the center. So I knew about it that way.
When you talk to the radiologist or anyone else from your cancer center, you can question them and the way they do things. Don’t hesitate to ask questions. You absolutely have that right and it’s important for you to have confidence in your providers.
I know reading the breastcancer.org message board can be overwhelming. The board is NOT well-moderated and many threads can go on for thousands of posts. But perusing some of the discussions can help you get a sense of what exactly you want to know about YOUR situation. Besides the message boards, there are some informative articles there. You’re in a new world with a new vocabulary, and a bunch of new acronyms.
I told myself that millions and millions of women have gotten through this, and if they can, I can. It’s rare to die of breast cancer these days.
I will second ThelmaLou’s comment that while-you-wait results are very untypical. Even at very high quality cost-is-no-object practices. If they’re in the midst of further characterizing an already known bad diagnosis stuff moves in a day or two (net of weekends of course).
While they’re still working on an ostensibly healthy person and gathering the rest of the story, things are slower.
For damn sure nothing is as frustrating as having an earlier medical practice foot-drag on delivering old records that may or may not end up being relevant. If it’s practical for you to visit them face to face you can often hand carry the approval around and move your request to the top of a bulging stack of other requests.
I knew my margins were clear the second time around. I had a follow-up appointment this afternoon with my surgeon, and he told me that the pathologist found NO cancer cells in the tissue he removed! Therefore, the procedure may not have been necessary but I sure am glad I had it. You can’t be too careful with this sort of thing.
That’s even better news than just “clear margins”.
He also said that my healing is progressing normally, and wants to see me again in a month and that will probably be it for him.
My wife had no cancer cell in her lump as well. This was a couple of years ago. Both her sister and a cousin have had cancer so it was a matter of being more safe than sorry. My wife was pretty unhappy with having a scar, but that was IMHO a small price to pay. Of course, it’s not my body with the scar.
That’s fantastic news, nearwildheaven! I’m sorry I didn’t get back to congratulate you on the follow-up. I’ve been tossed from pillar to post with various troubling medical crap and have been too distracted.
With me, I’m happy to say the diagnostic mamm. and ultrasound resulted in an ‘all-clear’ sign from the radiologist; just a cyst. Also good news is that I’m not “dense” (heh at least not in that way), but only scattered density and fat (yay for fat!), so my breastseses are easy to read–and since I will now get annual exams AS I SHOULD HAVE, that’s good to know.
Hugs to all who go through this. And thanks again.
I had an appointment with the oncologist to discuss the Oncotype score, and when he walked into the room and told me that he had good news, that totally made my day. My score was 5, which is about as low as it can possibly go, and since it was below 18, I do not need and would not benefit from chemotherapy which is just about the best news I’ve had since all this started.
I’m still going to do radiation, although I suspect it will be a few weeks before they can do it because my breast isn’t fully healed yet.
The OT told me that he had been doing this since 1993, after encountering multiple patients with lymphedema who were suffering unnecessarily. He said that the chances I will get it are unlikely, because I didn’t have the axillary lymph node packet removed, but I still need to monitor for it.
Also, the radiation oncologist’s office called yesterday and said they can get me in tomorrow afternoon for a simulation; I will have a CAT scan that will be used for marking, and then a fake treatment, and she will tell me when I can start. A lady I volunteer with at the library said her husband had terrible nausea with his, but he had esophageal cancer (from which he is now in remission) and that makes sense, considering the area that’s being irradiated.
IME following people through BC radiation, it’s like having a severe cold and a severe sunburn simultaneously.
*Real *low on energy and ambition, rather sore & tender where you’re getting zapped, but otherwise systemically OK. Set very low goals for what you intend to accomplish in any day and it won’t be too awful. Other than the logistical hassle of going there every day or every other day or whatever pattern for a few weeks. It certainly helps to have the radiation facility not too far from home.
Somebody who intends to work full time and take care of the kids and dogs and all the rest exactly as they were when not under treatment will be in for a rude awakening and a miserable, life-draining experience. Don’t be that person if there is *any *alternative.
If you think there’s no alternative, think again and recruit friends, family, or volunteers from the onco support crew to help. A tremendous amount of what most people believe they *must *do is far more optional than they tend to assume. Neighbors can feed dogs, kids can live on PB&J for a month, husbands can learn to bring home takeout or make burgers every night, whatever.
As the Orange Morons say on TV: “You can do it. We can help.”
I had NO side effects from my three weeks of radiation. People told me I’d feel fatigued, but I didn’t. I don’t know why, because I’m sort of a sissy snowflake (are we still allowed to say “sissy”?). When I was lying in the machine I could tell when they turned on the juice, and it was only for 60-90 seconds. I was in and out of the center in half an hour (not counting looking for a parking place).
I avoided all skin damage by following a regimen that someone else told me about. When I got home from radiation every day (except weekends), I sat on my bed with a bowl of water with ice cubes in it and soaked a washcloth in the icy bath. I wrung it out and held it on my boob until it warmed up to body temp. Then dunked again, wrung out, and did the same thing. I did this every day for about an hour. The doc and the radiation techs were amazed that I showed absolutely no burning, no skin damage, or even discoloration. I also used the lotion that the radiation oncologist gave me, but I think it was the hour-long ice baths after treatment that did the trick. Of course, I had my radiation treatments in Texas in July-- so icy washcloths were a treat. YMMV
Everyone’s different. I’m otherwise very healthy, and the rad onc said when I saw her before that she doesn’t anticipate that I’ll have any big issues with this.
Awesome. Enough positive attitude to assume the best, but not so much that you blindly plow ahead beyond your actual ability as you discover whatever it turns out to be, is just about optimum.
I had my CAT scan today and may be able to start treatments as early as Tuesday or Wednesday. If that’s the case, they’ll be spread out over 5 weeks, so it may not be as rough on me as they might if it was straight Monday through Friday. I did ask about the cold-water treatment, and she said, “No, no, no! Do not do that!” and instead recommended vitamin E oil. I’ll get some next time I’m at a grocery store.
Therefore, the procedure may not have been necessary but I sure am glad I had it. You can’t be too careful with this sort of thing.
