Just Diagnosed - So Many Questions!
Hi all. A little over a month ago I found a bump in my armpit that felt like a small grape. Within 3 weeks I had a mammogram and ultrasound, a biopsy two days later, and this last Monday I found out I have cancer (IDC with mucosal features). Two masses in my left breast (<2 cm) plus the swollen lymph node in my armpit. Yesterday I got a call directly from the oncology office saying the doctor wanted to meet with me same day. Met him (he's lovely) and found out I am ER+/PR+, HER2+. He said he's treating it as stage IIB for now, pending results of the PET. He wants me to get the PET, a rheumatic(?) workup to rule that out, a port put in, an echo, all within the next week, and see me again next Thursday.
I'm so terrified. I did not know one could straddle hope and imminent demise so heavily at the same time. So many questions. First - what if it has spread? What if it is everywhere? I have a 9 year old child and am 46. Second - what is chemo actually like? Will I be able to work? Will I be able to get my child to and from school? Will someone else have to take care of him for weeks on end? I know what is coming (sort of) but I am not yet able to grasp HOW what is coming is going to be? How bad is treatment, how bad can it get? What is daily life like going through it?
So……yes, the list goes on and on…..
Any stories or info on the experience for women with a similar diagnosis to mine would be helpful, the good and the bad, and all the in between.
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Hi @forgottenfraggle and welcome to Breastcancer.org.
We're so very sorry for the reasons that bring you here, but so glad you've found us. You're sure to find our community a wonderful source of advice, information, encouragement, and support — we're all here for you!
First things first, take a deep breath. We know the beginning can be so overwhelming and thoughts run wild. But the more you learn about what you're dealing with and the treatment plan ahead, the better you'll feel.
Chemo is very doable — although it depends heavily on the chemotherapy regimen you'll receive, many of our members find that with the help of pre-meds (medications to stave off nausea, for example), the side effects aren't as bad as they anticipated. It's no fun ride, for sure, but definitely doable. And, keep in mind, there are lots of things you can do if you find chemo is just way too harsh, such as talking to your doctor about dose reduction or a different regimen, learning the timing of side effects so you can anticipate them and head them off, and other types of complementary care that you can try in addition to your treatment.
And, while you're planning your treatment, you can join one of our monthly chemotherapy threads so you can talk with others undergoing treatment right along with you to share experiences and tips. There are also threads based on the chemo regimen you'll be having so you can learn what to expect. Also, these threads are super helpful:
And, while you wait for the ever-helpful responses from our amazing members, we suggest you also check out the Triple-Positive Thread where you can meet others with a similar diagnosis — introduce yourself, share your story, and ask your questions. You can also search for other members with a similar diagnosis using our Member Profile Search tool.
Again, we're so sorry you're here, but you've found the BEST place for support. Join one of our free, weekly In Treatment Virtual Support Groups for additional face-to-face peer support and tips.
Sending big hugs — you've got this!
—The Mods
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I was in your situation 3 years ago: 2 masses in my left breast and a swollen lymph node. The lymph node biopsied negative, but one mass was triple positive (ER+, PR+, Her2+) and the other was HR+, PR-, Her2+. My children were high school and college aged, which meant I didn't have to worry about taking care of them physically, but obviously I worried about their mental health.
Because the lymph node was negative, I was able to do 12 rounds of THP (taxol, herceptin, and perjeta) which is supposedly a little easier than what you will probably do if your lymph node is positive, which is TCHP (taxotere, carboplatin, herceptin, perjeta). I had echocardiograms every 3 months but never had a problem with my heart. I had CT and nuclear bone scans to check for spread rather than a PET. Thankfully that was clear, except my CT scan revealed a 3.5 cm nodule on my thyroid that ultimately meant half my thyroid was removed, but it was benign.
As far as chemo goes, I was not able to work due to the nature of my job, but I think I would have struggled to work anyway. I was, however, able to do things like attend my daughters graduation and college orientation, and run basic errands like go to the grocery store. The worst days were 3-5 days after each chemo infusion, and on those days I really just stayed in bed, sleeping and watching TV. The rest of the time I was able to cook, do laundry, etc., I just felt like I had a hangover the whole time, and the fatigue is a beast. I did force myself to go for a 30-40 minute walk every day.
After chemo I had a double mastectomy without reconstruction, although I could have had a single mastectomy if I had wanted that. I was not eligible for a lumpectomy. I had residual disease after surgery, so I went on to 14 rounds of Kadcyla (T-DM1). This was much better than chemo and I felt pretty normal most of the time, although I did have some milder side effects. My hair grew back and I returned to work part time. After Kadcyla I went back full time.
I drove myself to all but my first chemo session, as my cancer center is pretty close to my house. You will be able to care for your son most of the time, but there will be days you will need some help. There were days I simply could not cook or be around food. You probably won't feel like doing active things like playing soccer, but you will be able to watch movies, do Legos, help with homework, or do other quieter activities with your child.
Let me know if you have other questions.
Once your plan is in place you will be far less scared. I was so anxious I could not sleep. l was very aware that my daughters were watching, and I looked at it as an opportunity to teach my daughters that they could do hard things and overcome whatever obstacles came their way.
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Sorry you are here but sounds like you have a good doctor you like and trust and that is a good start as well. Hang in there and remember it is hard at times but with support of family and friends you can get through this. You will also find people going through surgery and treatment at the same time and learn tips for things you may have issues with as well. Best wishes to you!
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I can really relate to how overwhelming those first few weeks feel. The waiting, the scans, and all the unknowns can take such a toll emotionally. What helped me get through was breaking everything down into smaller steps instead of thinking too far ahead. Once treatment begins, it often feels a little less terrifying because you’re moving forward with a plan.
Chemo experiences vary, but most people find a rhythm after the first couple of cycles. You’ll figure out which days are harder and which days you feel well enough to work, drive, or do school pickups. Having a support system in place for your son on the tougher days will give you peace of mind. Even if you can’t do everything physically, you’ll still be present for the things that matter, helping with homework, watching movies together, or just being there to talk.
It may sound small, but keeping certain routines outside of treatment can really help mentally. For me, making time for self-care, whether it was a short walk or even something as simple as a haircut at Five Star Barber Brand, gave me a sense of normalcy when everything else felt unpredictable. Those little rituals can anchor you and remind you that you’re more than just a diagnosis.
If you want to explore more ways people balance treatment with daily life and self-care, you can learn more about simple routines that promote confidence and well-being alongside medical care.
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I was you in 2017 with a swollen lymph node and a 3.5 cm tumor, triple positive 2b stage pending scans. I was 47 years old (with two 10 year old kids); it’s nerve wracking but hopefully the PET will show no spread and you will get treatment. There are excellent treatments for triple positive breast cancer and if there is no spread to distant organs your prognosis will be good. Hang in there. We are here to support you. You can do this.
PS Don’t know what kind of job you have. I do office job and worked through treatment.Best
LaughingGull
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Hello ForgottenFraggie, so sorry you're having to go through all these workups. Before you have your surgery, please ask for a MRI to serve as your baseline.
Did you mean to write IDC with "mucosal" features? After your surgical pathology, you may wish to ask for a 2nd opinion on pathology. If it's determined that your tumor has "Mucinous features", please proceed with caution because Mucinous does not respond to all conventional chemo therapy types, so please due your due diligence. Ensure a dedicated breast pathologist examines your slides and ensure your oncologist is successfully experienced in treating the rarer "Mucinous" BC malignancies.
You could also seek out a Nurse Navigator for their guidance at your hospital.
You could also search & read the "Mucinous Carcinoma" thread, if it's diagnosed. Best wishes.
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Thank you so much to everyone who responded. Your words and encouragement and experience mean a lot to me. I got my port placed on Tuesday, Thursday I had the PET, and Friday I had my first echo. My PET came back as no further spread, just the one lymph node and the two masses in my left breast. They are all on the same side, and apparently at least three centimeters from my nipple, which I think means if treatment shrinks them I may be able to do lumpectomy and not a full mastectomy. I'm open to whatever my health requires, but am hoping for the former rather than the latter, for myself. I let my son's teacher know what was happening. She asked for permission to share with his other teachers so that they all could be available/have extra eyes and ears for him if needed, and within 15 minutes, I was getting a call from his vice principal. She told me that she was a five year breast cancer survivor. She spoke with me for a good 20 minutes. I had never met this woman before, and I knew as I spoke with her I needed her call. She offered me hope, of course. But what she gave me that I don't know if I can ever repay her is a safe space for my son. She told me I could tell him that she had cancer, and that he could go speak to her at any point if he needed to, and ask her any questions he had. I know he is going to need that, and to have her offer it is such a gift.
Today it is Saturday night, and on Monday I start my treatment after a follow-up with my oncologist. I'm nervous, but I am dang ready to start. This morning, I got a call from a number I did not recognize. As it is Saturday, I let it go to voicemail. It was my oncologist. He was letting me know that he had just gotten my PET results and was available to talk about them if I needed to. And he left me his personal cell number. I was floored. And incredibly grateful. The world is…..difficult right now. And this situation, it is…reminding me that people are good, and loving, and community minded…
Things I am already grateful for this early on - the reminder that people do care about other people. The fact that I will come out of this possibly never having to wear a bra again. (I am not small chested) Learning to just be myself, with everyone I meet, and that who I am is perfectly okay. Learning to advocate for myself. Possibly curlier hair after a brief separation. Practice, every day, living in the moment. Learning to accept help, in whatever form it comes. And acceptance. Thank you, ladies. Thank you for responding to my terrified post.
To answer the question about my work, I am a phlebotomist. I work at a plasma donation center. My job is basically an athletic event. No sitting, walking and standing for the full 8 hours. Plus squatting, lifting, twisting, bending, constant use of my arms and hands. I wear a smart watch, and on average I walk five miles a day just at work. I love my job. I love my coworkers. And I love (most) of my donors. I could barely get through a day without collapsing into bed for days from exhaustion just before my diagnosis. I do not think I can do the job while going through treatment. I am luckier than so many, my employer pays for my STD, and the first 6 months wages are covered 100%, given medical need. Then Long Term Disability kicks in at 66%. My managers have been amazing and supportive and offering me everything they can in terms of help. My coworkers are threatening to start wearing "F*CK Cancer" t-shirts to work.
I slept 11 hours last night. The first time I slept through more than four hours at a time without waking up, the first time I have been able to stay in bed past 7 am in weeks. I know I'm ready.
One more question. When do I shave my head? I've done it before, out of rebellion and whimsy. But I did it by choice. This time I do it as a battle cry. (And also because I have fabulous hair and can't stand to see it fall out.) So…..if I start treatment on Monday, how soon should I plan to shave my head so as to avoid seeing clumps of it on places that are not my head?
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