My Breast Cancer Diagnosis: What Can I Expect?

Normally they follow “NCCN” guidelines. You can look that up but I had triple pod and did chemo w Herceptin w a port, Herceptin continues for a year. I cold capped and kept my hair. Then did rad now on aromatase inhibitor had some issues on the way but not too bad. Overwhelming fatigue some times was worst side effect. I did lumpectomy first but usually they want you to do chemo first

Have you been staged yet? Knowing that should help you get an idea of how long you’ll have the port.

Hydrate hydrate hydrate. It helps with the all of it

Last August I had my first lumpectomy. At my follow up, was told I needed 2nd lumpectomy as the pathology report again showed unclean margins (btw, my tumor was over 5” long when removed). Saw my Oncologist and he said I “didn’t really have cancer”, see you in 6 months. Walked out with an April 2025 appt. Next day, THE VERY NEXT DAY, I found out I needed a Mastectomy! Talk about confusion! Fired the oncologist, got another, she lied to my face (already knew the answer to my question), then admitted to sending me for a test waaaaaaay too soon since surgery. Fired her ass too. I now have the perfect team set up for me. Going into my 6th round of chemo on Tuesday. 1/3 done with one chemo, 11 more months with the other! I am amazed at how NOT SICK I am. I’m impressed, but waiting for the other shoe to drop. Horrific headaches, stomach cramps, diarrhea, throwing up (only once), food tastes horrible or tasteless. So far that’s all, oh wait; doc is not happy with me cuz I keep losing 2 pounds a week. Now is NOT the time to lose weight. She said she’ll happy me lose weight after chemo (got another 50 I’d like to lose)! Chemo only lasts about 3 hours now. NEVER imagined it being this “easy” - well compared to back in the day. Thank You Jesus!

Tell your doctor you want a prescription for Lidocaine. An hour before chemo, you lather it on your port thick, put Saran Wrap over it (I use a little scotch tape to keep Saran Wrap in place). This will help with pain when putting the needle in your port, you won’t feel a thing (as long as you put enough on, real real thick!

I also us d the cold cap. My hair only thinned out from chemo. I also used booties on my feet that are frozen and also gloves that are frozen while I was getting chemo , to prevent neuropathy. So far no neuropathy. I used lidocaine before inserting needle into the port. It helps somewhat. It depends on the nurse if she is experienced. I also asked for numbing spray before inserting needle sometimes it helped. Good luck to you all and God Bless you all.

I was diagnosed with triple positive stage 1 breast cancer 10-22. With stage 1 typically you would get a lumpectomy & radiation. (I needed a second surgery because my breast surgeon did not get clear margins) and I completed the radiation, but because of my age (almost 70), I decided to skip the chemo (herceptin & taxol), but I did do the Herceptin injections every 3 weeks (17 shots recommended). 12 rounds of chemo (once a week for 3 months) and a year of Herceptin infusions (thru a port or just injected into alternating thighs if you have no port) is standard for HER2 positive bc. Everyone is different and there are other factors that can be looked at, but I got 3 different oncology opinions before I made a decision. It would take so much more writing to go into everything and how I made my decision, but I will tell you that standards change often as more is learned and I would do research on the drugs they will be using and the long term side effects. Ask lots of questions. It is so overwhelming. Best to you.

With a diagnosis of HER2, you will always need Herceptin for a year. It’s a blocker for any cancer cells.

I was also diagnosed wit her2 positive er positive stage 1. I went through 3 months of weekly chemo and Herceptin followed by 15 rounds of radiation . Now I’m just finishing the Herceptin every three weeks for a total of a year. Also taking zoladex injections every 4 weeks and Anastrozole everyday for the next 5-10 years. I had 2 lumpectomies with reconstructive surgery before starting the treatments. I had hardly any side affects from the chemotherapy. Some fatigue, diarrhea, some hair thinning but not to bad. I think the best thing I did was stay as active as possible and hydrate, hydrate, hydrate. I used cold gloves and socks and had no neuropathy. Lots of protein and veggies. Love on yourself as much as you can and keep a good support system. Try not to google to much the internet can scare you. I will pray for you.

I had the option to do lumpectomy but chose mastectomy to avoid radiation. I was told radiation would be 5 days a week for 5 weeks. Had no information other than a visceral reaction that I did not want to undergo radiation treatment. I have very little pain from mastectomy. Drains are a bearable. I find out if cancer spread at my follow up this week. Hang in there😘

Stage 3

Jackie where are you located

Appreciate this thread! I’m HER2 positive on Phesgo every 3 weeks. Response has been good enough that chemo is being delayed until after mastectomy.

I also never had radiation or chemo PRIOR to any of my surgeries, only once Mastectomy was done and healed. Also, I continue to use the cold packs on my feet. I already have neuropathy on my feet, don’t want worse. Hand cold packs did nothing for me, my hands are way too small. Didn’t do cold cap either, just couldn’t fathom dealing with ice on my head while already getting headaches from the chemo, but that’s just me and I’m weird, so……

Hi Shannon G. When you went for your second opinion were the doctors recommendations different from your first doctor?

Actually, you don't need lidocaine when accessing the port. Instead ask for the cold spray prior to accessing the port. It freezes the port area so you don't feel any pain.

I also had HER2 Positive, ER/ PR Positive Invasive Ductal Carcinoma Stage 1 Grade 3. I went through chemo first, then I opted for a double mastectomy with skin sparing with reconstruction tissue expanders. My breast surgeon and plastic surgeon worked as a team. My surgery was 4 hours. 6 months later I had exchange of tissue expanders with cohesive silicone implants. Three months afterwards my same plastic surgeon performed nipple reconstruction. I am so pleased with the results. I am 14 months out from being cancer-free.

We are all here for you. I had stage 1B triple positive with chemo right away every three weeks for 4 months and than a lumpectomy and than radiation and chemo again after 6 weeks did chemo for another another 9 months and than put on a hormone blocker. Started on Tamoxifen but switched me down the road.

Well, slight change. Still HeR2 positive, still receiving Phesgo every 3 weeks, but now Taxol chemo weekly. So far, so good, minimal side effects 🤞

I still have 6 more weeks of chemo - and the fatigue is keeping me from doing or going anywhere- I feel like I can’t get out of bed some days

Feeling uncertain about what lies ahead after a cancer diagnosis is completely natural, and seeking out information and a second opinion shows great self-advocacy. Many patients find it helpful to write down questions beforehand for appointments, and connecting with others who have similar diagnoses can provide valuable insights about the treatment journey. The community here has a wealth of experience with HER2+ treatments, and many members are often willing to share what helped them prepare for and navigate their care.