Newly diagnosed and scared

lisenbysl
lisenbysl Member Posts: 22

Good afternoon. I was diagnosed with breast cancer in my left breast on April 1st of this year. I have had a double mastectomy with no reconstruction and some lympth node removal on May 4th. I just had chemo port put in on May 16. I am 45 years old and very scared. I see my Oncologist on the 31st to determine my treatment. I think I am more afraid of how the treatment with make me feel. I have a 13 year old son who plays soccer and I am very involved with this. I don't want to miss any of it, but I know I will have to at some point. I work at home for an insurance company, which I am so thankful for, and I wonder if I will be able to work at all during the treatment. 

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Comments

  • joannstar
    joannstar Member Posts: 403 Member
    I worked through out

    my chemo treatments at a full time job (I was doing bookkeeping). I needed to take the day of the treatment off (which was on Friday) and then I would take either the following Monday or Tuesday off due to the bone pain from the neulasta shot that I would get on Sunday mornings following the infusion. I had 6 treatements 3 weeks apart. I was diagnosed as Stage 1 Grade 3 Triple Negative, No nodes. I had 2 lumpectomies (the second to get clear margins). I would rest after work but managed to take 2 classes in the evenings and also attend temple services most Friday nights and sing with the band monthly. By the way, I had just gotten married (for the first time) 4 months before diagnosis and was 57 at the time.

    It's been 5.5 years and although I've had biopsies and just had another lumpectomy in the other breast--no cancer!

    You can do this!

    Good luck.

    JoAnn

  • lisenbysl
    lisenbysl Member Posts: 22
    edited May 2016 #3
    joannstar said:

    I worked through out

    my chemo treatments at a full time job (I was doing bookkeeping). I needed to take the day of the treatment off (which was on Friday) and then I would take either the following Monday or Tuesday off due to the bone pain from the neulasta shot that I would get on Sunday mornings following the infusion. I had 6 treatements 3 weeks apart. I was diagnosed as Stage 1 Grade 3 Triple Negative, No nodes. I had 2 lumpectomies (the second to get clear margins). I would rest after work but managed to take 2 classes in the evenings and also attend temple services most Friday nights and sing with the band monthly. By the way, I had just gotten married (for the first time) 4 months before diagnosis and was 57 at the time.

    It's been 5.5 years and although I've had biopsies and just had another lumpectomy in the other breast--no cancer!

    You can do this!

    Good luck.

    JoAnn

    Bone pain? Ouch. Was it

    Bone pain? Ouch. Was it extremely painful? No nauseau/throwing up and tiredness? I know everyone's side effects are different. Just trying to get a general idea of what to expect. Does the infusion shot hurt/burn at all.

  • Teach76
    Teach76 Member Posts: 351 Member
    edited May 2016 #4
    Good for you that your team

    Good for you that your team is being aggressive with your treatment!  Each person reacts differently to chemo, and you may experience all or none of the side effects presented.  I would suggest that once you meet with your onco and have a plan, reconnect here.  Once folks know which drugs will be used they can better help you understand the expectations.

    Things change so quickly in the medical field;for example, most of us had to return to our centers for the Neulasta shot the day after infusion.  Now you see ads on TV about the wearable patch.

    For now, recover from your surgery.  On the 31st, allow us to travel with you (in spirit) on the "Pink Bus!"  

    as to not missing fun times, during my chemo my daughter was playing volleyball.  I did not miss a game!  Once you know his soccer schedule you can adjust your "rest time" around it.  You will just need to be careful about germs around you, but at least you are out of flu season.  Don't look to how many games you may miss - be happy about all of the games you will attend! (Hopefully all of them!)

    Looking forward to hearing from you here in our supportive community!

     

    Kathy

     

  • desertgirl947
    desertgirl947 Member Posts: 653 Member
    Do-able

    February 2012 I had a double mastectomy.  I did not want to mess with reconstruction, as I didn't want anymore surgeries or recovery time.   I wanted to get on with life.

    April - July that year I did chemo every other week, four infusions of Adriamycin/cytoxin and then four of taxol.  The anti-puke pills I had worked for me.  I only took them for about three days while doing AC.  I did not need them when I was doing taxol.  The med people told me there was no need for anyone to be vomiting after chemo.  If what I was taking was not working, I was to let them know and they would change it.  (My insurance is good, and that would not have been an issue for me.  I realize that with costs, it is not easy for everyone to be able to make changes.)  I did neulasta shots the day after an infusion.  For the most part, I was able to be out and about.  I learned which days might be my "laying low days," as I got used to the chemo regiment.  I will say that those days tended to be about three out of a fourtenn-day cycle.  I was able to do a weekend trip out to Ohio (from NY) after my second infusion.  My family was gathering to celebrate my parents' 60th anniversary.  Family, as well as others, we amazed I was able to do that as well as I did.

    After chemo, I did radiation therapy.  The challenges with that were minimal.

    Through chemo and rads, I was able to stay on schedule, a good thing since I had plans to be out of town about 10 days after my final chemo infusion.

    I had a few challenges while doing chemo -- midway through.  Not sure if it was the taxol or the accumulation of the infusions and neulasta shots.  The last few weeks I had a few days when it felt like my thighs and hips ached a bit.  I also developed a pesky little cough.  Taking DEEP breaths always led to coughing and then I had to not take deep breaths when coughing or it would not stop.  What helped me during the few times that were especially difficult in this regard was my med people recommending I take an allergy pill.  That worked well.

    Now I take tamoxifen.  Initially I was on a five-year plan for HT, then seven.  Now it is ten.  Probably midway through the med people may change which drug.

    Hope this helps you a bit.  Midway through October I will mark four years clean.  Having good support from friends and family, colleagues and other people in my small town was a big boost.  Having a deep trust in God kept me grounded and seeing Him make all this more do-able than I ever imagined.  All of this contributed to a positive outlook, which I think was a big plus for me. 

    I wish you well.

  • lisenbysl
    lisenbysl Member Posts: 22
    Thank you all so much. I

    Thank you all so much. I really appreciate your words of encouragement and your own testimonies. I will keep all this in mind and keep you posted. My faith is God is great. I know he will bring me through this.

  • Marcie50
    Marcie50 Member Posts: 2
    joannstar said:

    I worked through out

    my chemo treatments at a full time job (I was doing bookkeeping). I needed to take the day of the treatment off (which was on Friday) and then I would take either the following Monday or Tuesday off due to the bone pain from the neulasta shot that I would get on Sunday mornings following the infusion. I had 6 treatements 3 weeks apart. I was diagnosed as Stage 1 Grade 3 Triple Negative, No nodes. I had 2 lumpectomies (the second to get clear margins). I would rest after work but managed to take 2 classes in the evenings and also attend temple services most Friday nights and sing with the band monthly. By the way, I had just gotten married (for the first time) 4 months before diagnosis and was 57 at the time.

    It's been 5.5 years and although I've had biopsies and just had another lumpectomy in the other breast--no cancer!

    You can do this!

    Good luck.

    JoAnn

    JoAnn that is exactly what I

    JoAnn that is exactly what I have just been diagnosed with, triple negative stage 1, grade 3. I went yesterday for a second lumpectomy as my first did not have clear margins. I start chemo June 3, 6 rounds every 3 weeks. Did you have radiation? My team is telling me I will need 18 radiation treatments after chemo. I am hoping to work through treatment, I work 12 hour shifts at the hospital and my oncologist is wanting me to take the first few weeks off to see how things go. Today was a tearful day, just feeling overwhelmed! But thankful to hear your story and positive outcome, thanks for sharing.

  • joannstar
    joannstar Member Posts: 403 Member
    edited May 2016 #8
    Marcie50 said:

    JoAnn that is exactly what I

    JoAnn that is exactly what I have just been diagnosed with, triple negative stage 1, grade 3. I went yesterday for a second lumpectomy as my first did not have clear margins. I start chemo June 3, 6 rounds every 3 weeks. Did you have radiation? My team is telling me I will need 18 radiation treatments after chemo. I am hoping to work through treatment, I work 12 hour shifts at the hospital and my oncologist is wanting me to take the first few weeks off to see how things go. Today was a tearful day, just feeling overwhelmed! But thankful to hear your story and positive outcome, thanks for sharing.

    Yes, I had radiation

    I finished chemo 1/25/11 and started radiation about 2/6/11 (I never thought I'd forget anything about my cancer journey and yet finally dates are starting to recede into my foggy memories). I had 28 treatments and 5 boosters for a total of 33 sessions. I had an 8:15 appointment and would then go into work. Not working was just not an option for me. I guess we all do what we have to. I would say to you, give working a try and see how you do. We each react so differently to the chemo drugs. Be sure to drink plenty of water. Buy paper plates and plastic silverware. Go next week to get a wig because you will probably lose most of your hair, but it will grow back (at least mine did). Take the anti-nauseau meds on schedule--it is easier to control that way and I didn't find that I had any problems with nauseau. I did have to take miralax for constipation. I felt overwhelmed a lot of the time, but I made it through and so will you.

    Good luck.

    JoAnn

  • disneyfan2008
    disneyfan2008 Member Posts: 6,583 Member
    The waiting is the pits, as

    The waiting is the pits, as you know. I did not have to do chemo, so no advice...

     

    Just sending hugs

    Denise

  • desertgirl947
    desertgirl947 Member Posts: 653 Member
    After thought

    The primary reason I did not work when I was doing chemo is that I work in elementary school with little kids -- kids who often are sent to school even when they are sick.  As it is, even now, we get sneezed on and coughed on.  With a potentially compromised immune system, it just seemed best that I take a short leave of absence. 

    I was about a month from finishing radiation therapy when school resumed.  Because my appointments were mornings, I only worked half days. That went fine, although near the end I took a little more time off because it was easier for me to treat the bit of burning I had.

    With what you say you do for your work, you could feel well enough most days to work.  If I had had a job where I worked at home or with a small group of adults, I could have worked much of the time.

    e

  • Just_lori6
    Just_lori6 Member Posts: 76
    lisenbysl said:

    Bone pain? Ouch. Was it

    Bone pain? Ouch. Was it extremely painful? No nauseau/throwing up and tiredness? I know everyone's side effects are different. Just trying to get a general idea of what to expect. Does the infusion shot hurt/burn at all.

    Hello, I was diagnosed with

    Hello, I was diagnosed with breast cancer 10/2015. Stage 3c. I had a double mastectomy in November and began chemo in December. I finished chemo 3 weeks ago. I took the frost 2 months off (I had 4 months of chemo every other week). I would recommend at least taking the first 2-3 treatments off so you can see how it will affect you. I am at work right now and I go to radiation treatments every week day after work. I've only gone for 3 weeks now so my skin is not burned yet. "Oh" I had the bone pain too but I told my oncologist and he gave me some pain killers that took care of it. Be sure if your sick you get anti nausea meds (they help tons!) & if your hurt get pain meds. It will make this whole process so much easier. Don't worry too much you will be okay~ I was really scared and cried tons but Ive come out pretty good. You should be able to make your sons games. Even though I didn't go to work most days I was out and about. 

    Take care ♡

    Lori

  • Kiki2016
    Kiki2016 Member Posts: 31
    edited May 2016 #12
    Working through chemo

    hello, first, I am so sorry that you are going through this.  I was diagnosed on Feb 1st.  I need the "trifecta" treatment of chemo, surgery, and the radiation.  I started chemo (TCHP) the end of Feb and have had 5 of 6 treatments.  I am getting infusions every 3 weeks.  I have taken my day of treatment (Thurs) off as well as Friday, the day I get my neulasta shot.  Have been back at work for Monday.  Taking some Friday's off (using vacation time) to get extra rest.  I have a desk job but some days are still tough and I manage work and then have to come home.  Before my diagosis I worked out 5-6x week doing high impact cardio and weight lifting.  Since my treatment started some days I don't have the energy to do anything after work but have tried to do something 3x week-just much lower intensity.  I find I sleep better if I do something active.  Stay well hydrated, it will help you tolerate treatment better.  I discovered organic  coconut water at Costco and it helps.    I wish you peace and good luck during your treatment.  

     

  • dpletzke
    dpletzke Member Posts: 11
    edited May 2016 #13
    lisenbysl said:

    Bone pain? Ouch. Was it

    Bone pain? Ouch. Was it extremely painful? No nauseau/throwing up and tiredness? I know everyone's side effects are different. Just trying to get a general idea of what to expect. Does the infusion shot hurt/burn at all.

    bone pain

    I've had 3 treatments and only had bone issues once. Take Claritin the day before and for 4 or 5 days after and that helps.

     

  • dpletzke
    dpletzke Member Posts: 11

    Do-able

    February 2012 I had a double mastectomy.  I did not want to mess with reconstruction, as I didn't want anymore surgeries or recovery time.   I wanted to get on with life.

    April - July that year I did chemo every other week, four infusions of Adriamycin/cytoxin and then four of taxol.  The anti-puke pills I had worked for me.  I only took them for about three days while doing AC.  I did not need them when I was doing taxol.  The med people told me there was no need for anyone to be vomiting after chemo.  If what I was taking was not working, I was to let them know and they would change it.  (My insurance is good, and that would not have been an issue for me.  I realize that with costs, it is not easy for everyone to be able to make changes.)  I did neulasta shots the day after an infusion.  For the most part, I was able to be out and about.  I learned which days might be my "laying low days," as I got used to the chemo regiment.  I will say that those days tended to be about three out of a fourtenn-day cycle.  I was able to do a weekend trip out to Ohio (from NY) after my second infusion.  My family was gathering to celebrate my parents' 60th anniversary.  Family, as well as others, we amazed I was able to do that as well as I did.

    After chemo, I did radiation therapy.  The challenges with that were minimal.

    Through chemo and rads, I was able to stay on schedule, a good thing since I had plans to be out of town about 10 days after my final chemo infusion.

    I had a few challenges while doing chemo -- midway through.  Not sure if it was the taxol or the accumulation of the infusions and neulasta shots.  The last few weeks I had a few days when it felt like my thighs and hips ached a bit.  I also developed a pesky little cough.  Taking DEEP breaths always led to coughing and then I had to not take deep breaths when coughing or it would not stop.  What helped me during the few times that were especially difficult in this regard was my med people recommending I take an allergy pill.  That worked well.

    Now I take tamoxifen.  Initially I was on a five-year plan for HT, then seven.  Now it is ten.  Probably midway through the med people may change which drug.

    Hope this helps you a bit.  Midway through October I will mark four years clean.  Having good support from friends and family, colleagues and other people in my small town was a big boost.  Having a deep trust in God kept me grounded and seeing Him make all this more do-able than I ever imagined.  All of this contributed to a positive outlook, which I think was a big plus for me. 

    I wish you well.

    thanks for sharing!

    thanks for sharing!

  • dpletzke
    dpletzke Member Posts: 11
    edited May 2016 #15

    After thought

    The primary reason I did not work when I was doing chemo is that I work in elementary school with little kids -- kids who often are sent to school even when they are sick.  As it is, even now, we get sneezed on and coughed on.  With a potentially compromised immune system, it just seemed best that I take a short leave of absence. 

    I was about a month from finishing radiation therapy when school resumed.  Because my appointments were mornings, I only worked half days. That went fine, although near the end I took a little more time off because it was easier for me to treat the bit of burning I had.

    With what you say you do for your work, you could feel well enough most days to work.  If I had had a job where I worked at home or with a small group of adults, I could have worked much of the time.

    e

    teacher

    I teach third grade and had to leave the classroom in April. There was no way I could do my job-not even considering the germs. I am too fatigued and it would be unfair to them. I'm not sure I'll be able to start the class in the fall. I don't think I could work 1/2 days, how did you do it?

     

  • peony
    peony Member Posts: 306 Member
    Working Through It

    I managed to work while taking chemo and radiation.  I was incredibly tired sometimes and think I was just running on automatic pilot.  Tell people; get your friends and family to help you and don't hesitate to ask them. I say anybody taking chemo needs some help. Let them drive you or take a Uber. Give yourself a break and be good to you. 

    I had to realign my priorities according to my "wellness" level- that included my energy level, my gastric situation (nausea or diarrhea), chemo brain (just can't think!) and myriad little things. (There were times I had difficulty swallowing- not that I could taste anything). The good news is that it will pass and soon you'll be on the other side of it all, looking back and saying "Ha! Is that all you got!"

    Today's June 1. What did your Onc say?

  • lisenbysl
    lisenbysl Member Posts: 22
    I start chemo on the 17th.

    I start chemo on the 17th. The red devil for 4 doses every two weeks. Then Taxol for 12 weeks. I just had my heart test today. Bone scan on Wednesday. Getting scared all over again.

  • peony
    peony Member Posts: 306 Member
    The Red Devil

    He was not my friend. This was the period that I used to decide what I wanted to do with my hair. Wig, no wig.  I went no wig because they never seemed to fit me comfortably. I hat shopped. I didn't have much appetite, but I went out for a great seafood dinner.  Everything you eat is going to have a metallic undertaste and you will find little joy in food for a while, so eat it now. The Devil made my nails and the palms of my hands turn black, but that doesn't happen to everyone. It went away pretty quickly.  Taxol was easier for me. My appetite was better and I had less nausea and diarhea.  I think plain old stubborness got me through much of it all. I started chemo on Oct 8 and I was determined that Thanksgiving and Christmas was going to happen as usual at my house, and it did. Even if it took me over a week to put up a Christmas tree!  It's going to be alright!  Best wishes.

     

  • Meme14470
    Meme14470 Member Posts: 30 Member
    Side Effects

    I too am sorry you are going thru this, i was diagnosed Oct 30th (2015) and had lumpectomy mid December, it had traveled to one of the lymph nodes and they felt I needed chemo before my second surgery to widen the margin.  I started Jan 14th with 4 treatments of the Red devil with the neulasta home injector for the day after.  After these treatments I also had 12 weekly Toaxol treatments. It is very true that everyone is very different with the side effects, I had no nausea/vommiting at all, but had some heartburn, prilosec took care of that.  I did have terrible bone pain after the neulasta shots, but the main side effect for me was horrible mouth pain and oral moucositis, i didn't have any open sores in my mouth, but it was inflamed the entire course of treatment along with dry mouth.  This made eating very difficult for 21 weeks.  Taxol was a little more tolerable and I eventually found a dental gel with aloe in it that helped the mouth inflamation.  I also have some neuropathy (numbness and pain) in my fingers and toes from the taxol (this may or may not go away)  I just finished my last taxol treatment on 6/3 and am starting to feel about 2% better each day.  My 2nd surgery is scheduled for july 1st and will have radiation after the surery.  I did not work during the chemo and applaud any who has, i found it to be very draining and difficult with the mouth issues (i did try, but had to give in and stop).  Going back to work 6/20 (with a week off for surgery) and am hopeful I can work through the radiation treatments and get them on my lunch hour.  It is all very overwelming and I hope you don't have too many side effects.  Take the meds for any symptoms you may get, the pain pills help the pain, nausea meds help if you are nauseated.

  • nabpink
    nabpink Member Posts: 4
    The waiting . . .

    My first time here. Newly diagnosed and waiting for surgery next week (Lumpectomy).  Can't stop my mind from spinning. I bought a journal hoping to get thoughts on paper but haven't had much luck yet. As someone who likes to influence (ok control) things in my life this is just excrutiating.  Have a good support network of family and close friends. I worry about my husband, he's been a "rock" but shuts down when I get emotional I think because he can't "fix it".   I have faith it will all be ok in the end but going through the process and not know ing what to expect is difficult. Thank you all for sharing your stories, healing wishes for you all.

  • LoveBabyJesus
    LoveBabyJesus Member Posts: 1,679 Member
    edited June 2016 #21
    lisenbysl said:

    I start chemo on the 17th.

    I start chemo on the 17th. The red devil for 4 doses every two weeks. Then Taxol for 12 weeks. I just had my heart test today. Bone scan on Wednesday. Getting scared all over again.

    Tips for chemo AC/T

    I am sorry you are going through this. I have a blog and recently posted an article on chemo tips. I hope you find it helpful: https://thesmallc.com/2016/06/16/21-tips-for-chemo/

    I am available to chat if you'd like. My email is thesmallc@yahoo.com. 

    Please know you're not alone. We are here for you. xo