I want to make the right decisions

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Terricka
Terricka Member Posts: 16

I went to the doctor today to decide a treatment plan. My Oncotype is 19 with a recurrence based on 9 year 16%. I am only 33! She stated that there haven't been any studies on people in my age groups. She recommends chemotherapy, 8 rounds. The first set is Cytoxan and Doxorubicin, then the last 4 with Taxol.

Is this normal to have a lot of different chemos medications. Im so scared.

My ER 95% PR %95 HER2 negative. I had two positive lymph nodes after double mastectomy.

I'm really thinking about not doing all that treatment. Especially since Doxorubicin can cause heart damage.

She said she wanted to treat this aggressively!

Please help! What should I do? Should I get a second opinion? She stated my mapping score should be back soon.

Comments

  • KMom57
    KMom57 Member Posts: 252
    edited December 2020

    Terricka, I don’t really have enough experience to be able to advise you about what you should do. Someone who knows more will no doubt be along soon to give you info. I just wanted to reach out and let you know you aren’t alone. Also wanted you to encourage you about chemo in general. I did not do doxorubicin, and so can’t speak to that, but the chemo I did was not as bad as my imaginings of it. It was not a picnic but it was doable. Many people work throughout chemo, and live their lives. Hopefully someone who knows doxorubicin can tell you what it’s like and help you.

  • MountainMia
    MountainMia Member Posts: 1,307
    edited December 2020

    Hi. I'm so sorry you are facing these decisions. Absolutely get a second opinion if you're not sure you're getting good advice. However, YES. It is very normal to have a combination of chemos in your protocol. In fact, the 3 you mentioned (Doxorubicin, also called Adriamycin, with Cytoxan, followed by Taxol) is a very very common combination. They all do somewhat different things, so have the best opportunity to kill all the cancer cells when used together.

    Yes, Adriamycin can cause heart damage. However, the risk of that is low, and your doctor is comparing that risk against the risk of cancer recurrence. You only have one shot at being very aggressive, so it isn't necessarily out of line to recommend an aggressive treatment. But again, ask for a second opinion if you're not sure.

    Here is a link for more information about each of the chemos she's recommending. http://www.chemocare.com/default.aspx It is indexed by drug name, and also by type of side effect. Lots of the people here have had the exact same combo you mentioned. I had the AC (Adriamycin and Cytoxan) part. It sucked, but it didn't suck as badly as I expected. I didn't have bad side effects, had very little nausea, never threw up. I had a few days where I didn't feel very good, and when I was actually done with the treatment, I had some significant fatigue. But that passed, too. Mostly while I was in chemo I was able to carry on my life, a little more slowly, a little less energy, a lot more careful not to get infections. I did get to go places and do stuff.

    There will be others who come here to comment on your post. Hold tight. Getting through making these decisions is one of the worst parts.

  • Poppy_90
    Poppy_90 Member Posts: 105
    edited December 2020

    These are really hard decisions, so don't push yourself and take the time to make choices you are comfortable with.

    If you don’t mind, I’ll share a little if my story. On diagnosis, I was also give AC/T recommendation. I decided to be as aggressive as possible, as you only have one first shot. Like my MO said, I was young and healthy and should be aggressive in hope of the best possible outcome. About halfway through chemo, I could no longer feel my lump. On completion, the ultrasound showed it had disappeared entirely. The chemo did what it was supposed to do. I was lucky enough to get clear margins on my lumpectomy. My MO was so pleased, she surprised me with a cake on the day she gave me the results. I have no regrets.

    Was chemo fun or easy, no. Was it doable? Absolutely. I did have nausea in the AC, but it is very treatable. We found the right combination of meds that worked for me, and it helped a lot. The fatigue is real, so get ready for that. But if I can do it, you can. Also, one other bit of advice that helped me. Before starting chemo, my MO told me to forget everything I had seen in movies or TV. That she had the meds to get me through any side effects. And she did. Don’t let what you have seen from Hollywood scare you.

    There are so many people on this site who can help you and have a lot more knowledge than I do, but hoping my story might help. Honestly, I’m happy to share anything so feel free to ask anything. I know how scary the right now is for you. I’m here if you need me.

  • moth
    moth Member Posts: 4,800
    edited December 2020

    You're young so yes, it makes sense to try to hit it hard. And AC+T is a pretty standard recommendation.

    Remember, the oncologist's goal is not just to treat you now, but to try to prevent it coming back. They prescribe chemo when they believe the benefits outweigh the risks.

    You can see some statistical outcomes on the Predict site. I think with your numbers you'll see that chemo gives you a significant reduction in risk of fatal recurrence (AC+T is 3rd generation chemo for that site) https://breast.predict.nhs.uk/tool

    You will also be put on hormone therapy. Remember that while many women find it tolerable, some find it very difficult and end up stopping early. If that happens, and you are unable to tolerate hormone therapy, and you did not have chemo, then you're relying solely on surgery to keep you cancer free. According to Predict, almost 2/10 people will have died in 15 years with surgery only (based on what I remember of your stats and I think you said Grade 1 tumor). & I'm imagining you want to be around for more than 15 years. 5/10/15 year predictions always seem quite inadequate for young women like you....

    You do have to trust your team. If you don't trust your team, get a second opinion. But honestly, I really don't see anyone not recommending chemo for someone as young as you. I agree with comments above about chemo being really fairly tolerable. Side effects are well managed. Some people even manage to work almost full time while doing treatment.

  • AbbyRhodes3
    AbbyRhodes3 Member Posts: 41
    edited December 2020

    Generally, the younger you are the more the inclination is for your health team to really KILL that cancer and give you a better shot at a good, long life. For perspective, I am 58, and my team is still treating my Stage1/Grade3 HER2+ cancer agressively --- adjuvant chemo for six rounds. My oncologist actually said to me that they would have gone with lighter chemo drugs, except "you're so young..." and they want to do everything they can with an eye on the long term. The word 'young' made me smile. But I took her point.

    Half way through, they did a sonogram and found no visible sign of my tumor. If that remains the case next sonogram and at surgery, it will tell us that my prognosis is much better than if the cancer were still there. That's the other reason for adjuvant chemo- to see how your cancer responds to the chems. Tells your docs a LOT. I see you are looking at doing this after mastectomy, so I'm not sure how that plays into a decision or not.

    Chemo has not been easy for me. Everyone has a very different road with it, so you might have an easier time. There are some common side effects we all go through - changes in sense of taste and smell, some tiredness.It's been really rough on my gut. But if it means a statistically stronger chance at me being able to enjoy semi-retirement and retirement, and to enjoy my family and my life for decades to come then it will have been well worth it. I worked hard for the years ahead - the scariest thing about being diagnosed with this was the thought of losing them after 34 years of hard work and saving for a future that was suddenly threatened.

  • brittonkb
    brittonkb Member Posts: 102
    edited December 2020

    Terricka,

    My stats are similar to yours except I'm 48 years old ... very high ER/PR and HER2 negative. I had no clinical lymph node involvement but ended up having 3 positive nodes after lumpectomy. My oncotype score was 9 but my doctors recommended chemo due to my age and especially with the lymph node involvement. They (and I) wanted to treat this aggressively.

    I just finished chemo this past Monday. I did 4 infusions of AC (Cytoxan and Doxorubicin) every other week and then 12 weekly Taxol infusions. My MO was not concerned about the risk for heart damage with AC due to my age and no underlying issues. While chemo is not a walk in the park, I'm here to tell you that it is no where near as bad as I expected. The side effects are much more easily managed now than years ago. The most notable SE I had is fatigue and even that wasn't too bad.


  • Rambros
    Rambros Member Posts: 78
    edited December 2020

    You can certainly get a second opinion but your MO’s chemo recommendation is pretty standard for someone with positive nodes. I also was diagnosed young (36) with young kids. My oncotype score was also a 19. I did the same chemo regimen- not easy but doable. Good luck with your decision

  • AB45
    AB45 Member Posts: 152
    edited January 2021

    Hi

    I am starting Ac/Taxol regimen in a few weeks. I know everyone is different but did your fatigue prevent you from working or getting out of bed? How long did it last? Any other side effects or tips for this regimen?

    Thanks

  • MountainMia
    MountainMia Member Posts: 1,307
    edited January 2021

    AB45, everyone is different, just as you say. My fatigue never kept me in bed. I slept fairly normal hours, but a longer afternoon nap and a bit longer in the morning throughout chemo. (I had dose dense AC, but no T.) It wasn't until after chemo was over that honest-to-gosh fatigue set in. I couldn't walk much farther than down my driveway to the street for several days of it, at the worst of it, my legs buckled when I was out -- late July, very hot out, and I could barely breathe from the heat. On either side of those bad days, there were several during which I was good for a block or 2 of walking before having to turn around and go home. When I was inside and not physically busy, I did okay. In all, the fatigue part for me was about 3 weeks.

  • moth
    moth Member Posts: 4,800
    edited January 2021

    AB45, have you read through the Nov- Jan chemo threads? Reading the threads of people a few months/weeks ahead prepared me for most things. It's impossible to say how you will tolerate it but most people manage - maybe needing extra naps and an early bed time but few are really incapacitated.

    January 2021

    https://community.breastcancer.org/forum/69/topics...

    December 2020 https://community.breastcancer.org/forum/69/topics...

    November 2020 https://community.breastcancer.org/forum/69/topics...


  • hnsquared
    hnsquared Member Posts: 72
    edited January 2021

    AB45...moth and mountain gave you great advice/info. I just finished AC-T 8/5 and I was worried about all the same things you are. My MO encouraged me to drink tons of water, push protein and try to walk daily. Everyone is different but I did very well. I worked full time and only missed work for infusions. My job moved to work from home due to covid which was nice. I did 12 taxol first and then the 4 AC and did fine until the last infusion or two. The cumulative fatigue finally hit me at the end. I felt better 2 or 3 weeks after my last infusion. Take the meds to manage side effects and talk to your MO about any issues. You got this

  • AB45
    AB45 Member Posts: 152
    edited January 2021

    Thanks Everyone, it is so scary 😨! Not knowing what or if you will have side effects.My hope is that I will still be able to work and take care of my children

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