What’s next
I just got my results yesterday for invasive ductal carcinoma and my feelings are all over the place. First visit with doctor is today and my mind is already spinning.
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Hello @jaaaygeeee, I was diagnosed with invasive ductal carcinoma about 5 months ago. I had surgery about 3 weeks after my diagnosis and 5 weeks of radiation. I was scared, mad, and overwhelmed. Take everything one day at a time. If you need to, cry, scream, throw things. It's ok. You will have a team of doctors to help you on your journey. Talk to someone about how you're feeling. I did go into a little depression but the thought of my kids living without me kept me together.
You've got this!
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Thank you for sharing that @81Monica . It helps! Glad to hear you are doing well!
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Hello @jaaaygeeee, I was diagnosed with stage 2 HER2+ left breast cancer May of 2022. And it also traveled to my lymph nodes under my left armpits. I had to have chemo for a year. I also had 5 weeks of radiation. That was better than chemo. But before that My brother passed away in January and In February of 2022 my mother passed away. I felt so alone. I didn't think that I would make it through this seeing that I was only 42 without my best friend when being diagnosed. I had a double mastectomy in October of 2022. August 3rd of this year 2023 I had my second surgery. It's called Diep flap reconstruction surgery. It's almost been a year since I've been cancer free. I know you will be okay. It's scary, It's hard going through this. Especially if you are not around anyone that is going through the same thing that you are going through. No one really understand the things that we go through. I did seek out a grief counselor and she helped me. You will get through this.
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You are probably one of the strongest people!!! I don’t know if I could have gone through what you went through! It is scary but I have my mom here with me going to all my appointments with me. I don’t know what I would do without her! I am glad you are doing well. Thank you for sharing your story and giving me encouragement. Much appreciated!
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Getting that first diagnosis of breast cancer is scary. I was extremely anxious. Once you talk to the doctors you will have more info as to the kind of cancer and staging. I personally didn’t know there were so many types of breast cancer. Something I wish I still didn’t know lol. Anyway once I started my treatment the anxiety was a little less. I have read that is the same for a lot of people. I was diagnosed invasive ductal carcinoma triple negative stage 1 in July 2022. I did 5 months of chemo, August to January 2023. Lumpectomy in February and radiation ended in April 2023. I went to multiple Doctors in the beginning and had multiple biopsies before we started treatment. Hang in there. You got this.
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@jaaaygeeee , Thank you for that. My mother had sarcoidosis it is an auto immune disease that affects your vital organs. The disease affected her eyes lungs and kidneys. She was on dialysis for a period of time until she received her kidney. She lived with that kidney for 16 years until her passing February of 2022. I saw how my mother did not let that disease define her. She did get down at times, but she didn't stay there. I saw this for over 20 years of my mother living with this disease. She always smiled and laughed and joked around. After my diagnosis I wanted to give up so bad. I wanted to just say Lord take me now. But I didn't see my mother do that, so I had to live by her example. I thought about my mother the whole time I was going through treatment. My mother prepared me for the day that she wasn't going to be here. I know she didn't know that I was going to go through this but she made sure I was well prepared for whatever came my way.
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Hi @Ange_peterson I was just diagnosed with ER/PR negative and HER2 3+ Stage 2 in mid August. My Oncologist has proposed using Taxotere chemo plus targeted drugs Herceptin and Perjeta to go after HER2. 6 cycles over 18 weeks. Followed by surgery, then more HER2 treatment. Can I ask which drugs you had, and if the chemo was really bad? I have some cardio/BP issues and these drugs are cardiotoxic. Thanks for any insights.
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@Ange_peterson So far my lymph nodes show clean. I too have invasive ductile carcinoma in my left breast. Its about 2.9cm or a little over an inch. Not sure about surgery yet since I suppose it will depend on the initial treatment and if it shrinks the tumor or not.
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Hi RocDocVic,
I had those same drugs. And yes I want to say it wasn't until my 4th treatment that I started feeling fatigue. My legs felt like I had cement bricks attached to them. I felt so bad. I couldn't eat, my food tasted like metal. Some food or anything I drank burned like I put hot sauce on everything. The only thing that I could eat was peanut butter and jelly. I finished my 6th round in September of last year and had surgery in October of last year. As soon as surgery was over the surgeon said that all they had to remove was the markings they placed when I had my biopsy. And when they sent my tissue to the pathology lab they said that there was no sign of cancer. I still had to do trigger point therapy and radiation all at the same time. Trigger point chemo wasn't that bad. After about 3 months of finishing my first 6 sessions of chemo things started to get better. I also had left axillary lymph nodes . I believe I had 3 nodes under my arm. You got this!!!! You will want to give up but DON"T. Keep going !! Oh yeah I also got the neulasta shot the day after chemo for the first 6 sessions. If you are not getting that shot ask your oncologist about it. The shot is to rebuild your white blood cells.
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Hi Carrie, your story is sounding similar to mine. I just had MRI and now they want to biopsy both breasts. How did going to the multiple doctors go for you? I like my doctor but am wondering if I should get a second opinion.
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Yea that kind of the point I am at. I allow myself a quick 30 minute pity party (when needed) and then I yell at myself and say ok that’s over…get up and move on. I heard having a positive attitude can do wonders so that’s my story and I’m sticking to it!
Your mom sounds like a rock star!!! May she rest in peace and continue to watch over you.
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How do they determine what treatments to do before surgery? Mine is about 7mm right now. It seems small so I was hoping for just a lumpectomy but MRI scans are showing they’re maybe multiple sites so I am having more biopsies done.
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What is deip flap surgery?
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@jaaaygeeee The approach for treatment, (chemo, surgery, rad) is basically determined by the marker tests performed on the biopsy samples. Prior to biopsy I had extensive mammograms, more than usual pictures, immediately followed by extensive Ultrasound where they did both breasts and arm-pits to evaluate lymph nodes. This dictates what should be biopsied. Tests are run and if cancer then they run "marker" tests to hone in what's causing the cancer. Either hormones or HER2, or a combo. Size, location, number of tumors, and results of markers will drive proposed treatment path. I had an MRI to verify tumor location, size and spread into lymph nodes and chest cavity. Thankfully mine hasn't spread. Based on all of this they have good idea of Stage. The markers are the main drivers of the chemo drugs used. Some are "general", others go after hormones, and yet others go after HER2. As for surgery and timing, and if rad is needed is based on size, location, if they want to shrink the tumor first. In my case they want to treat with chemo first to prevent spread, shrink the tumor and then surgery, followed by more HER2 targeted treatment. In surgery they'll take a part of the first line lymph nodes to verify no infiltration of cancer. This is all I know.
Read up on breast cancer markers. I found good info on MD Anderson and Sloan Kettering Cancer Centers. Also some other breast cancer sites. When my results came in I also researched them on Google and what they meant. If your doctors don't fully explain all of the results demand that they do. This is your life and journey, take control and be proactive. Don't just rollover to what they say. Speak up. Have lists of questions and write down their answers.
I hope this helps. I'm not an expert but only relaying my experience. Cheers.
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Oh believe me I did all of that. I had the mammograms, ultrasound, PET Scan MRI, X-rays. I have never been to the doctor so much from May of 2022 until now. I have seen the doctor more times this past year than my whole life. And I am past 40. My cancer was spreading. I had a small tumor in my left tonsil and in my esophagus. I did chemo then surgery, radiation and chemo at the same time. sometimes on the same day. I also would have radiation at 9:30 am and appointment with another doctor at 10:30 chemo at 11:30 then have to make sure I'm home when my youngest son gets out of school, then maybe have another doctor appointment at 4:30. I asked all the questions that I needed to so that I would know what my next steps are. But after this last surgery I asked what the next steps are and the nurse kind of dismissed my question. I really didn't like that, but I do know that it is up to the surgeon to let me know the next steps. I am going to address that situation. From the start of my treatment until now I have been satisfied. I Left unhappy with my follow up appointments with the surgery team. I called the emergency line i3 weeks after surgery to ask if the discomfort was a sign of healing or should I be alarmed and no no one from my surgery team called to check up on me to see if I was okay. Please hold every one accountable if they make you feel less than you are.
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Hi @Ange_peterson Couple of questions on the chemo drugs. I know they can affect everyone differently, but did you experience nausea, vomiting, diarreah, constipation, chills etc? Did they give you good drugs to counteract these symptoms? How long after chemo did you feel like ****? Any heart problems??? My Oncologist will not bring on board a cardio Dr even though I have cardio issues. I've asked and it fell on deaf ears. May get 2nd opinion at MD Anderson. Getting ready for my treatments in about 2 weeks.
I'm also thinking about low dose THC/CBD gummies. Other friends of mine who've had cancer highly recommend this. Very low doses. Thoughts on this? Most appreciated.
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You are going to have more than a 30 Minute pity party. I still shed tears and wonder why It was me that had to go through this. And without my mother with me. I'm Cancer free and still can't believe I had Breast cancer. And then I laugh and say why not me? I have always been a giver. Now I can give back and it makes a difference in another person's life. And yes my mother was a true rock star. She was my best friend now that I am grown.
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As far as the chemo drugs, I did have some nausea and no vomiting. I did have diarrhea, and chills. If you let you oncologist and nurses know your true symptoms they will let the doctor know. I had an excellent team and did whatever I needed them to do for me to feel comfortable. It was after my second session that I started feeling like crap and by my 4th session I was very miserable and wanted someone else to go to chemo for me. My hair started falling out 2 weeks after my first session. I had a few Ecko scans and after surgery I did have to see a cardiologist. I didn't necessarily have a heart problem, I had fluid pumping from my heart to my lungs. They did put me on a water pill for a few months to get rid of the excess water that was building up. I haven't had to take that for about 4 months. At my last Cardiology appointment I was cleared. I am not on any medication at all. I would get a second opinion on the cardiology issues. And as far as the gummies if they help you through out your treatment I would take them. I DID!! I couldn't eat and was in pain at some times. The pain came from me getting the Neulasta shot the day after chem. The neulasta shot helps to rebuild your white blood cells. They should be giving you that at well the day after chemo. If I were you I would make sure that I have the best team that's going to make sure that I have the best outcome and live a long and healthy life. You got this!!!! I am here for you until you tell me not to be there for you.
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How bad was diarreah? Manageable or severe. I've had food poisoning where I had non stop plus occasional vomiting on top of it for 5 days. Doctor put me on Gatorade and Protein drink, plus rice and clear broth. Wondering if I need a few adult diapers for accidents. I have a bathroom very close by to bedroom and living room area. I have little confidence in my current team for monitoring my heart issues. No full time monitoring device that can be easily worn at least for 1-2 weeks from day of chemo. Only remove for quick showers. I just ordered a cardio wrist band too. Tracks heart beat, rate, blood pressure and O2.
Just like them never contacting me about previous EKG results with flags for previous arm surgery in mid June. I had to research results from MyCharts on Google and then contact known Twitter Doctor. He couldn't believe it. He said I should have been referred to cardio ASAP. Classic, yet Kansas University is now a NIC designated Cancer Center. ARGH
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I'm not going to lie my diarrhea was bad. But my oncologist gave me instructions to take Imodium and how to take it to stop it from being so bad. Now I will tell you that you should have an extra change of clothes in your car at all times with a towel and maybe some body wash or some wipes that will hold you until you get home. If you are not comfortable with your team right now, It's not going to get better at all. I actually miss my team. If I had to do it all over again I would want to have the same team, I know my oncologist might be different he's a little older. But I would not change any one on my team. If I were you I would do research on other doctors and patient testimonials on the team. I am so blessed to have these people in my life. I had an EKG before chemo, after my 6th session of chemo and after my first surgery. Find someone that cares about you as a person not a dollar sign. Remember You have the right to refuse and to ask for a second opinion. This is your body!!
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