New, scared, waiting for next steps

UnrealTarHeel

Brand new and it's all hit so fast. My physician felt a lump that I'm kicking myself for not noticing, because it was so obvious. Mammogram and ultrasound on 2/21. Biopsy 2/26. On 2/28 I'm sitting in a radiologist's office learning that the 1.2 cm tumor is grade 3, hormone-negative, HER2+ cancer. Two other areas biopsied nearby are "probably" benign.

Fortunate to be practically next door to a major breast center but appointments don't begin until week of 3/9. I'm scaring myself reading about the aggressivity of HER2+. I'm worried about those lymph nodes that looked unaffected on ultrasound—will they still be (or really be) when we finally get down to doing something? Is that too long to wait?

I'm in a daze one minute and in tears the next. I've done the awful business of telling our teenager and my mother. I'm trying to wrap my mind around what needs to be done at work, but it's hard without knowing if I even will be able to work. I want to scream, I want to cry, I want to curl up in a ball, I want this not to be happening. And just a week or so before all of this, my husband accepted a job out of state, with plans for me to stay here working a job I love while our teen also finishes school. It seemed like a good idea at the time. Now it's adding to the freak-out.

I get that this is all normal for situation that's completely not normal. These boards have been so helpful. If any of you have some words of wisdom, hope or comfort because you've been there, I'd be so grateful.

nonomimi5

Unreal - Yes, we have all been there, no matter what our DX is, it is painful, lonely, and traumatic. Fortunately, there are posters here that have similar DX as your’s that can comfort you every step of the way. Sending you positive prayers and keep yourself busy. The waiting game is the worst. If it gives you a small comfort, I binged watch TV programs on Netflix to forget and escape.

Ingerp

As my RO told me, HER2+ tumors are more aggressive but have better outcomes specifically because of Herceptin. You will likely get 12 weeks of weekly Taxol and Herceptin and then Herceptin only every three weeks for the balance of a year. Taxol is sometimes referred to as “chemo lite”—not a walk in the park but for most people not debilitating. I took a half day off on treatment days but otherwise worked throughout. If you get Taxol you’ll get some premeds (typically Benadryl, Zofran, a steroid, and an antacid). I never felt nauseated through chemo, although took Zofran for a day or two after every treatment because the steroid can interfere with sleep and Zofran makes you drowsy. I ate a *lot* of protein throughout and know it helped my blood levels and energy.

You’ll find threads specific to your diagnosis, treatment, and when you start treatment. I’d recommend favoriting those along with the treatment ones starting a month or two ahead of you. Lots of good info/tips.

Freaking out is normal but when it’s time, you’ll have a whole lot of people e-holding your hand. I think it’s important to focus on the fact that this is a blip in your life. Not fun, but you will get through it and to the other side.

UnrealTarHeel

Thank you, to you both. This is so helpful. Not knowing what to expect just allows every single possibility to rush in and fill the void.

DogMomRunner

Hi UnrealTarHeel- (assuming you're from NC) I had similar diagnosis. I had a lumpectomy, did the 12 weeks of Taxol and Herceptin, and then 20 rounds of radiation therapy. I'll be finished with my year of Herceptin this June.

Like Ingerp said, Taxol is doable. I worked full time and just took my infusion day off. I couldn't take the Zofran (prone to headaches anyway) but I was never nauseous enough to quit eating. Most things tasted bad and I had the drippy/bloody nose throughout. I had to have Neupogen shots because my white cell count dropped during chemo. There is a weekly Taxol thread in the chemo section here that is really helpful.

And there are threads under the Her-2 section also. Us Her-2+/HR- are a small group

Good luck with your upcoming appointments and treatments.

UnrealTarHeel

Thanks, DogMomRunner. Yes, in NC (not from NC, but have been here a while). At this point, doable is sounding pretty good. And you are more than halfway through your year! Hope also to be posting from the other side before too long....

Ingerp

By the way, I’m a Hoo. ;-)

daenerys30

I am in a similar place. I had a mamogram and ultrasound last wenesday after my OB/GYN noticed dimpling and that the lump I though was just a lipoma seemed suspicious. The radiologist who looked at the ultrasound was very concerned and did a biopsy the same day. The next day I got the news that the 3 cm lump is cancer. I think I'm in shock still. One moment I'm determined to carry out with my near future plans and carry on as I would normaly do, the next moment I remember my diagnosis and am surprised all over again and the next I'm freaking out. I am supposed to get a call from the breast oncologist for an appointment tomorrow. What scares me the most is that I don't know my full diagnosis yet and I have no idea what treatment plan is in store for me. I try to read treatment options on the internet and I end up so anxious. I'm the type of person that wants to fix whatever is wrong right now and I need to be patient. The only people that know are my husband and some co-workers. I don't want to tell my family yet because I don't have all the information. There is no history of any cancer in both sides of my family and I am freaking out. I feel perfectly healthy but worry that I'll be dead six months later. I just hope I get some answers soon.

UnrealTarHeel

Hi, Daenerys30: I wound up posting on your thread while we were both waiting for results because it was so similar to what I was going to post. We are in very much the same place and I'm not very good at sitting with ambiguity, either. FWIW, I talked to a good friend who is a physician today and she said to stay off the internet -- not because of scare stories, but because until all of the data points are in, you can't really say what's actually relevant. I'm making an exception for this site and the good general advice everyone is providing about coping with this storm of emotions, questions, and fear. LIke you, I'm bouncing around -- largely ok one minute and a weepy mess the next. I hope we can follow one another to a good outcome soon.

Cogartm

I was diagnosed last summer, stage 2a progesterone positive, and just finished 5 months of chemo. The beginning of being diagnosed was the scariest and most emotional part for me, not knowing what to expect and constant worrying about treatment. I had some pretty rough chemo for two months and then switched to taxol for 3 months. I didn’t have any problems with the taxol, was just extra tired for about two days of the week. You WILL get through the treatments and you WILL get better. Talking to other BC survivors was the biggest help for my anxiety. Sending you much support!

Anonymous

Hey Tarheel,

I was a temp tarheel some time ago (Fayetteville area, but secretly wanted to live in Wilmington . Remember right now Dr. Google is not your friend. If you feel the urge to research, this is the place to come--for now. HER2+ status is a subtype of b.c. but seems to have a bunch of ways to treat it; you'll get that tx and then you can put this behind you. Don't get too far down the "projecting" road just yet-staying present and not falling down the rabbit hole of fear is normal, but it won't help. You will be okay! Could your husband work out something with his new position so he could be with you, at least till you understand what your tx plan is and then to get a support system in place?

I found that half a tab of .25 mg Xanax helped me through the worst of these early days. It's such a miniscule amount that all it did was allow me to breathe more deeply and took the edge off my high anxiety without doping me up. My breast surgeon willingly offered to write me the rx.

Hugs,

Claire in AZ

UnrealTarHeel

Claire -- your message is perfect for this morning. Exactly the words I needed to hear. I've been pulling myself back from the edge since about 5 a.m. and just reminding myself how much is still not known about my case and how many people have told me that this is a really tough time--before having the info and a treatment plan. Hubs is going to talk with his new employers and I'm pretty sure they will be accommodating. I'm a quiet introvert by nature and watching so many friends mobilizing around me and sending kind notes has been a revelation in itself, as well as the reassurance of everyone here. Trying to sit in that space of love as much as I can. My GP gave me some lorazepam that's helping me get a bit of rest. And I've definitely stopped googling, and even staying off of any but the general support threads on this site. Challenging for a librarian. I still hate this, though.

DogMomRunner

I was in a similar state of panic until I met with the breast surgeon and thenmy MO. They came up with a plan. Both my husband felt much better after talking with them. My husband managed to be at all of my chemo treatments. He called them "date days".

It's scary but you (and many of us) have been diagnosed early. As long as those "probably benign" areas are benign then your treatments will match us stage 1 people. And it's very doable. Not a cakewalk but few things in life are. Gather your support team around you. Take care of yourself. If you need something for anxiety then take it. Take time to do something fun that wil

Anonymous

Hi Tarheel, I partially stopped research while I found out exactly what my plan would be...but I did talk to others who had b.c. in the past. Hard for a librarian, I bet! Hard also for this academic. Talking to a colleague who had been through similar tx as mine would be helped-she and her professor husband found that dose dense chemo would give a slightly better chance of survival and reduce recurrence rates, so I investigated and requested that-and got it. Often just knowing that I had xanax on hand (if I didn't need to take it) was a huge relief and anxiety reducer.

I suppose the best advice I gave myself during all this was just lean into it. I told myself all the tx I would receive would work, and that helped me embrace it-hard as it was.

Claire in AZ