Just diagnosed and scared.

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  • Love83
    Love83 Member Posts: 111
    edited November 2018

    For those of you that had masectomy, was it painful and did you get breast implants. Did you have to be intubated (put on breathing machine) during procedure?

  • CaliKelly
    CaliKelly Member Posts: 474
    edited November 2018

    Hi Love, I had one sided mastectomy and tissue expander placement same time. I was in the hospital overnight and all the next day. My surgery went long because my surgeons were digging out all my lymph nodes, and encountered a lot more muscle or fascia they call it than they expected πŸ˜‚ I'm into weight training. I did have a breathing tube, but didn't know it.I won't lie, it was painful, but the medication does the job. My prescription said take the pain meds every 6 hours but they only worked for 4 hours. I was scared to take them sooner! Suffered needlessly because the Dr's said I could've taken them after 4 hours!So clarify that with your team.after 4 days I only needed them at night. Otc meds ok for daytime after 4 days. The tissue expander is to make a space for the implant which for me came after radiation. Also be sure to take the stool softeners. The pain medication will cause constipation!😜When are you getting surgery?

  • star2017
    star2017 Member Posts: 827
    edited November 2018

    I had two mastectomies and later had implants placed (at the time of mastectomies I had a tissue expanded placed to slowly stretch the skin after it heals).

    I was definitely inubated during my exchange and second mx. Not sure about the first. During my first I was pregnant so things may have been atypical.

    Mastectomy was not that bad. Less than a week of prescription pain killers. It’s uncomfortable, especially when your drains are in, but not too bad after that. I have had two csections and they were much much worse.


  • Love83
    Love83 Member Posts: 111
    edited November 2018

    Did you ladies have to get CT scan also bone scan

  • Love83
    Love83 Member Posts: 111
    edited November 2018

    Why did you have two masectomy?

  • CaliKelly
    CaliKelly Member Posts: 474
    edited November 2018

    had pre op ct scans, bone scan, heart muga test,chest xray, phew, I think that's allπŸ€”πŸ˜Š

  • Love83
    Love83 Member Posts: 111
    edited November 2018

    Ok making sure , cause I have to do bone and CT scan next.

  • star2017
    star2017 Member Posts: 827
    edited November 2018

    yes, ct scan and bone scan before chemo. Maybe most people do it before mx but I couldn’t bc of the pregnancy.


    I had one Mx first. Then when I found out I was brca2+ I chose to have the other breast removed to prevent future breast cancer. I did the second surgery after chemo. You can see the details of my process below.



  • Love83
    Love83 Member Posts: 111
    edited November 2018

    I see so far from all the information they got it's stage 2, will have to do AC+ T chemo AC chemo for 8 weeks and T for 12 weeka , with about a month of recovery from chemotherapy, then surgery. As long as lymp nodes not affectes don't think I will need radiation, but will have to take a pill I forgot the name for five years. I'm going to elect to get mastectomy. As long as CT and bone scan looks good this is the plan. Did you guys have to go through chemo so long?

  • star2017
    star2017 Member Posts: 827
    edited November 2018

    tamoxifen is probably the pill you’ll take for five years (it’s a form of hormone therapy, which means it blocks estrogen from finding stray cancer cells).



  • Love83
    Love83 Member Posts: 111
    edited November 2018

    Question, if I have masectomy why do I have to take pill if I have reconstruction. I just thought of this question of course when I leave Dr.

  • star2017
    star2017 Member Posts: 827
    edited November 2018

    If the pill you're referring to is tamoxifen, it doesn't have anything to do with reconstruction, as far as I know.

    If your cancer is hormone receptor positive, it basically means it likes estrogen and progesterone and those hormones make it grow faster. While the mastectomy should remove all the local cancer cells and chemo should get any cells that may have scattered in the rest of the body, there is a small chance that some cells will be missed, or, I suppose, that a new breast cancer could occur. Therefore most women are prescribed tamoxifen (or another form of hormone therapy) to help prevent stray cancer cells from finding estrogen.


    Did I answer your question?



  • Love83
    Love83 Member Posts: 111
    edited November 2018

    Yes Dr. StarπŸ˜€

  • Love83
    Love83 Member Posts: 111
    edited November 2018

    Did you have to do chemotherapy for long? like what is suggested for me.

  • Love83
    Love83 Member Posts: 111
    edited November 2018

    Did you have to do chemotherapy for long? like what is suggested for me.

  • star2017
    star2017 Member Posts: 827
    edited November 2018

    Yes, my chemo was very similar to yours. Mine was the "dose dense version". I had 4 rounds of AC and 4 rounds of Taxol, so an infusion every two weeks.

    With AC, my main symptom was fatigue. I was very rarely nauseous. The doctors gave me anti-nausea meds in my infusion and also some steroids for the few days after which made me feel pretty good. If I felt even the slightest bit of nausea, I took Zofran, but I think that was only twice or three times during the whole time I was on AC. I was also given Neulasta to help keep my white blood cell counts up. I was pretty tired during the AC treatments, and napped whenever I could, but I was able to be up and about too. The first week is tough, and then you start to feel normal. Then it's time for the next infusion.

    My hair started shedding about two weeks in, and fell dramatically three weeks after my first chemo. When it first started to shed, I had my husband give me a buzz cut. That's when I started wearing the chemo beanies (I had a cute wig, but didn't wear it that often).

    After my second AC infusion, I developed a fever. It was cold and flu season. My kids were sick, and I caught something from them. But bloodwork revealed my white blood cell count was also very low at the same time, so as a precaution, the doctors checked me in to the hospital. I had to have lots of tests, and was hospitalized for four days. It probably would have been more, but I was feeling better and all the tests were clear, and the doctor was sympathetic to the fact that I had a newborn plus two other kids at home, so I was out after four days. Thankfully, that was the only time my white blood cell count dropped like that and the only time I got sick and needed to be hospitalized. Due to the hospitalization, I had to delay my infusion. Then a couple weeks later, I developed a mild case of shingles, and so we delayed it again, to make sure I was strong enough for infusion #3.

    The four rounds of Taxol were easier in some ways and harder in others. Taxol usually doesn't affect your immune system the way AC does. I did not have quite as much fatigue, but I was very achy in the 2-4 days after Taxol infusions. I learned to take pain meds (Aleve, Advil, or Tylenol) regularly those first few days, until the aches wore off.

    Though I lost my hair in the first 2-3 weeks of chemo, I lost my eyebrows and eyelashes about 2 months in. That was a bit of a shock because suddenly I felt like I looked sick in a way I did not feel with just the hair loss. I started chemo November 29, 2017 and completed it March 21, 2018. I've got my brows and lashes. My hair is about pixie length. Most people say it looks like a hairstyle a flapper from the 1920s would have.


    How are you feeling about chemo? I hope the details I provided help ease your concerns. You can get through it. Drink water, rest, eat lots of fruits, and accept help.


  • Love83
    Love83 Member Posts: 111
    edited November 2018

    I didn't know eye lashes and eyebrows hair will also fall. I hope I don't get sick and my white blood cell count don't fall. Kind of scary..

  • CaliKelly
    CaliKelly Member Posts: 474
    edited November 2018

    My chemo was 6 cycles TAC all 3 given together every 3 weeks. Also gave myself Neulasta injection each cycle. Same deal with hair -day 13 after 1st cycle started to fall out, had already cut it super short. After that shaved my head. Mainly wore scarves with fake bangs, or "halo" like a wig but toplessπŸ˜‚ meant to be worn with hats, scarves etc. Had a cute wig too, wore it out socially, uncomfortable though for extended wear. Like Star said the zofran controlled nausea, She's right too, when the eyelashes and brows go,not fun, but I learned to fake it with makeup Do avoid germs! Hand sanitizer a must. Have to keep those blood counts up! I went to the gym as usual during chemo except first week after infusion, but was very aware of germs! I hope you do well with your chemo, and don't have any problems, get this crap over with, and back to life!πŸ˜šπŸ’–

  • star2017
    star2017 Member Posts: 827
    edited November 2018

    Love,

    Doctors will monitor you closely. You let them know how you feel, and they should take you seriously. As long as you feel your doctors are careful and attentive, I think you'll be okay.

    Not everyone has the same degree of hair loss. It all came back for me, but it was jarring in the moment. I wanted to give you a heads up so it doesn't take you by surprise.


  • Love83
    Love83 Member Posts: 111
    edited November 2018

    Did you have any weight loss?

  • star2017
    star2017 Member Posts: 827
    edited November 2018

    Nope, I didn't. Remember, I was pregnant when first diagnosed. Started chemo 3 weeks post partum, so it's hard to get a sense of my weight, but I returned close to prepregnancy weight pretty quickly. I was very hungry all the time during chemo. I think maybe because of the steroids. And I was less active. I was eating mostly healthy food, so I didn't gain a lot of weight, maybe just a couple pounds, but definitely didn't lose anything.

    My mother did a different chemo for a different type of cancer and became very sick and weak. I was worried that that's how chemo would be for me, but luckily that was not the case. I think there is so much research and experience with these breast cancer meds, the doctors know how to handle the side effects better.


  • Love83
    Love83 Member Posts: 111
    edited November 2018

    I'm already in the process of getting a couple of wigs made. And going on YouTube to learn how to do my eyebrows and will get eyelash extensions. I don't want to look sick. I just want this to be over.

  • star2017
    star2017 Member Posts: 827
    edited November 2018

    When the time comes, look for Look Good Feel Good events near you. They give you lots of tips and freebies.


  • Love83
    Love83 Member Posts: 111
    edited November 2018

    Is that something I need to Google is that a group?

  • Love83
    Love83 Member Posts: 111
    edited November 2018

    Is that something I need to Google is that a group? Thanks found it πŸ˜€

  • star2017
    star2017 Member Posts: 827
    edited November 2018

    Yeah it's an organization that runs programs for cancer patients, to help them feel healthy and beautiful. They do make up instruction and give you lots of products. It's all free. It's definitely worth checking out if they have something nearby.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2018

    Hi Love,

    Just wanted to wish you all the best with your upcoming treatment

    I'm so sorry you have to deal with all this.

    Glad you found this place....it helps so much. The experience is different for everyone re chemo side effects. I never lost eyelashes or eye brows with A/C E/C but hair and also free brazilian!

    Did lose some weight..but some do not. Take it easy and this is definitely a day at a time ..actually an hour or two at a time for the next few months.

  • Love83
    Love83 Member Posts: 111
    edited November 2018

    Thanks so much it's a lot to take in.

  • buttonsmachine
    buttonsmachine Member Posts: 930
    edited November 2018

    Love, you *may* be able to use cold caps to keep your hair. Just another possibility for you to explore, although I'm not sure if it'll be successful on an ACT chemo regimen. Personally I let my hair fall out, and wore wigs during chemo. I actually started to like them - they're kinda fun, and good wigs are comfy and very natural looking. My eyebrows thinned a little, but they still looked fine. I kept my eyelashes.

    Chemo is different for everyone, just take it one step at a time. You'll get into a routine with it, and you'll learn how to handle your side effects. I found it helpful to keep a symptom journal, so I could report back to my MO. When you first start chemo they give you a standard cocktail of supportive meds, but then they adjust it according to your unique symptoms. Just remember to tell them how you feel, so they can help you. πŸ˜‰

    Do you have a start date for chemo yet?

  • CaliKelly
    CaliKelly Member Posts: 474
    edited November 2018

    YES! the journal of symptoms, side effects, sleep patterns etc. I kept notes on what foods didn't bother me, what activities I did, how I felt after, Not only for Dr visit, but for me to help with the next cycle. I hope it goes smoothly for you, it did for me. Not fun, but you'll get through itπŸ˜šπŸ’–πŸ’–πŸ’–

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