After waiting forever, I just got my score and obviously my doctor recommended chemo. I have to admit, I was floored and decided not to have it and instead start taking an estrogen blocker. My doctor then proceeded to tell me the side effects from the drug. So here I am....my life is about being in nature and hiking----my own doctor told me that she had chemo for breast cancer herself, and that one of the side effects for her was damage to her lungs. She said she can still do her job, enjoys life, but "I just can't do things like hiking".... Side effects from chemo and from the estrogen blocker both list lung issues as side effects.
After leaving her office, I stopped and bought a bottle of wine, drank the whole thing over 4 hours, and didn't sleep all night. I feel like crap this morning, but is there anyone who decided not to do chemo based on a high Oncotype score?
Has anyone tried immunotherapy?
If I do chemo it would be 4 treatments over 12 weeks, and then I would be on the estrogen blocker.
I am looking for answers because I don't know what to do. Part of me just wants to live whatever time I have left with a good quality of life, vs spending the rest of my life on drugs (I'm 60) and having complications from them.
Has anyone been through and is done chemo? How do you feel now? Do you have issues once the chemo is done? Do you feel healthy? Are you able to be active?
I would appreciate any and all comments you have. Thank you!
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MelLump
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Hi MelLump, I'm 61 and my oncotype was 28 - just above the line for likely recurrence . I have done chemo. I was on an AC-T regimen ( A. = Doxorubicin Hydrochloride (Adriamycin) C. = Cyclophosphamide. T. = Paclitaxel (Taxol)) I am finishing my last round at the end of this month. In my case they were more concerned with the drugs causing heart issues and possible kidney issues, not so much about lung. I opted for chemo because I think they have been using these drugs for many years and a lot of research has been done on them, I am fairly healthy and I feel the benefit out weighs the risk. I also did anti estrogen for 6 months before surgery and will be doing it for 5 to 10 years after I finish chemo. I had a double mastectomy (cancer was only in the left but I figure take them both just to be safe). Radiation was recommend but I refused it. I feel since radiation is a local treatment and they removed all my breast tissue they would basically be shooting in the dark very close to my heart hoping to get any cells that may be left behind. I figure that is what the chemo and the anti estrogen is for. I don't feel the benefit out weighs the risk in this case.
I have not had very bad side effects from the chemo - the last round of AC (I did 4) caused pretty bad nausea and I got dehydrated. Once I had a fluids infusion I started to feel better pretty quickly. Side effects on the Taxol have not been bad, mostly fatigue.
I know a couple of women who are years past treatment and are quite active. Hope this helps. Wishing you well!
Thank you so much for your reply! I too had 2 tumors in my left breast, and opted to have a double skin sparing mastectomy for the same reason you did. I have my appt with the oncologist this Friday to review her plan for chemo, and then to ask about other options as well. If I take the chemo, it will be 4 treatments as well over a 12 week period. I am happy to hear you are almost done and had good results! This definitely gives me hope. And I am glad to hear about the women who are still able to be active...that is my primary fear! If I can't walk or hike after this, then I think I would just rather not do it. But I have since heard from a few friends who said they are find, and one had breast cancer in her 30's and that was 17 years ago. She is doing great, is a mother of 3, and is part of the dragon boat team. So that was comforting as well.
I appreciate you writing the details about the drugs you were one-I don't have that info yet, but will have it Friday. Thank you for the well wishes, and my well wishes back to you!
I hear you MelLump!!! I also had a high oncotype score and my oncologist recommended chemo. I’m surprised that your oncologist was honest enough to tell you about the side effects of chemo. Mine did not, she did tell me that whatever bad side effects I would get as a result from chemo she would tweak it. Honestly if I didn’t have my young daughter I would’ve opted out of chemo because I was so afraid of it. What upset me the most about chemo was the fact that my cancer would now be public to everyone. By that I knew the chemo would cause my hair to fall out and to the outside world I would be a ‘cancer patient’. That really upset me because I’m a very private person. Anyway, I went ahead with the chemo, they put me on Taxotere and cytoxan. I luckily responded well I’m the sense that I worked full time and took care of my young daughter, of course I had help from my family🙏🏽
But I hear you in regards to still wanting to do your hiking and nature outings. I definitely think you’ll be able to do the walls maybe not the hiking while your undergoing chemo. Of course, I would also walk with someone just in case you feel light headed.
I’m curious as to what chemo they want to put you on that causes lung damage?
The hormone pill is something else, amazing how one tiny pill can cause so much bone damage in less than a year BUT I will take all those side effects if god allows me to live to be your age. That’s why I’m ok with any pain/side effects because at least I’m alive and my daughter still has her mom. But I hear you , it’s hard! Hang in there❤️🙏🏽
Hi Mmnyc! Thank you for your reply!! I cannot imagine how you must have felt at a young age to have to go through all of that! I know what you mean about the cancer being visible...I am not looking forward to that! But at my age, I have to admit, that is not my biggest concern because with Covid, I've been letting it go to its natural color anyway...white!! lol.. My doctor has not yet shared all the side effects, but she did mention her own experience and for her it caused lung damage. My biggest concern is that after the chemo, I want to be able to go hiking again. I am trying to plan a move from FL to TN prior to chemo, and have my chemo done in TN. I love nature, and FL is all flat and tropical--I am not, and never will be, a tropical person. My main reason for moving was so that I could go hiking and maybe even start a side venture of taking people on hikes--can't do that if I get any kind of lung damage. I don't know yet what kind of chemo treatment I am having. I will get that plan this Friday. It must have been very hard on you to have to work and take care of your daughter. My friend is going to come and spend the 12 weeks with me in TN so that I will have someone to help. Luckily, I do work from home and my company is very supportive, so I know that will help.
I have a lot of questions for my doctor. She wants me to take Anastrozole after the chemo and did mention that I would have sore joints. I looked up the drug and the side effects are numerous, including bone loss. I am going to ask her about Immunotherapy and Targeted therapies, and then for the pill, I'm going to ask about Faslodex. It seems to have less side effects, and doesn't have bone loss as one of the effects.
I also want to get a second opinion one I have the chemo treatment plan just make sure there is nothing else out there that I can do. You are obviously younger than I am, and I am post menopausal as well, so my treatment may be different. It really just sucks either way, and I hate that any of us has to go through this. But at least we have much better technology now than we had 40 years ago. My mother had an horrific, long, agonizing death from breast cancer, and if I had to go through that, I wouldn't do it.
I so appreciate your response, and my best wishes to you. I know that with the advancements in technology, maybe there will soon be a pill that won't cause those side effects. My heart goes to you and your daughter! But I think you will be here for a very long time. My friend was 32 when she was diagnosed. She went through radiation, surgery, and chemo. She made through, got married, and proceeded to have 3 children. That was 15 years ago, and she is active as can be and has not had a recurrence. So there is much hope for you to live a long wonderful life!! XO
Hi Mel- I’m 53 years old and was diagnosed in 2012 - I had lumpectomy, chemotherapy, and radiation. I was HER-2 positive as well as ER positive, so I definitely needed chemo. I chose to have TCH instead of ACTH, because I was concerned about Adriamycin. Happy to report that although I had some classic chemo side effects during treatment, I did not experience any long-term effects. I’ve been on an aromatase inhibitor for 6 years now, and just started having some mild joint pain in my hands. Wishing you well!
Thank you so much Tory!!! That is great news to hear!! I will find out the chemo plan this Friday, and I will ask if it includes ACTH..although I am not exactly sure what that means. But I will be googling that! Thank you again and my best wishes to you!!
Chemo wasn’t’ recommended for me, however taking anastrozole was. I didn’t like the idea of taking anastrozole and delayed taking it for two months, and succumbed to the doctors order. After 15 months, I have stopped taking it, because of the side effects, mainly joint pain and vision blurring. It wasn’t until after being off it for about 10 days, that I noticed mood swings stopped! I’m not going back on it.
My doctor said let her know what I decide, well, I’ll let her know on my next appointment because I figure she’ll try talking me into taking something else.
I’m 65 this year, both of my parents have dementia, so that is a possibility for me down the road, and I feel I’d rather live my life in the best quality without the side effects. I’ve had BC twice, both very small and low stages.
Thank you suenavywife! After chemo they will recommend that I take that as well, and the side effects seem almost as scary as the chemo! I have heard so many women complain about the side effects from that drug, and I just don't know about any of it!! What scares me too, is the bone loss. I'm 60 and my life revolves around hiking. The thought of losing bone and breaking bones in later years just terrifies me!! My pathology report show clear margins, no lymph nodes, clear margins, and technically they say I am "cancer free". But if there is one or two cells that they missed, I may need to have treatment later if it comes back somewhere else. And for me, that is a BIG "IF"!! When you had the 2nd BC, what did they do? Remove it and then done?
I'm Stage 2a, and ER+. I would rather live a life of Quality than Quantity. If I only have 10 years left, I am going to live those to the fullest!! If I do chemo and pill, and I can't walk or t damages something else, but they say I'll live 20 years, I'd rather have the 10
Thank you so much for you response!! I see the oncologist today, and I have a ton of questions before I decide to do anything!
I saw my oncologist and because of the Ocntotype test which I wish I NEVER would have taken, I decided to do chemo because if I don't, I will always have the "what if" question in the back of my head. She prescribed Docetaxel and Clyclophosphanmide, both of which can have worse side effects that the cancer itself. Is there anyone who has taken those?
Yes, I had chemo 12 years ago and I hike sometimes more than 10 miles daily, no problem and I’m 64. I’ve never heard any other breast cancer chemo survivor who had this problem that your doctor did. I really didn’t find chemo that bad. I worked and went to the gym the day of each chemo. I just planned to stay in bed the third day after every chemo appointment when the anti-side effect drugs wear off. I’m so gIad I got surgery, chemo, radiation and hormone blockers. Did everything the doctor recommended and I feel healthy.
Hi, I just wanted to say that chemo and radiation are survivable despite how scary it seems. I had a lumpectomy then radiation then chemo. Radiation was no big deal just some fatigue as the weeks went by. Chemo, the first one was awful but the nurses were great and gave me lots of solutions for side effects. Acupuncture helped very much too for stomach issues. The remaining 3 infusions of taxol and cyclophosphamine were much better. You can get thru anything. We support you. I feel fine now. Treatments ended a year ago Thanksgiving. TNBC stage 1B.
Thank you so much! Hearing success stories like yours make me feel very hopeful. I'm still terrified, but it really helps knowing that there is life after it.
Hi, I just wanted to check in with you. How are you feeling and have you started treatment?I forgot to mention that I was 66 when diagnosed and treated. Almost 1.5 years later I feel fine though occasionally I have a bit of "chemo" brain but my husband claims not so. Anyway, I hope you've straightened out what treatment to get and are faring well. Talk to the doctor and nurses for help with side effects. It's hard for them to advise you in advance since they don't know how your body will react to the treatment. Ask lots of questions and keep a record. I wanted to forget everything once it was past but it's good to have a record of what you did aside from the bare bones medical record.
Hello! I am still waiting to start treatment, but I should be getting a call this week. The original plan was to start this week, but there was an issue with my insurance company in approving one of the drugs. I started taking an antidepressant and I am at least able to think a bit clearer. I'm still not happy about my decision, but I've decided that if I don't do it, I will have that hanging over me and I'll wind up in a loony bin thinking about it! My goal is to plow through it, and focus only on what I will be doing after it is done. My plan is to move to TN as soon as my treatment ends, and start hiking and living where I feel good. My only concern is that I am able to hike, and from what I hear, that is something that I will still be able to do after treatment. Other than that, I am doing ok, and I just want to get it over with! Thank you so much for checking in with me I really do appreciate it.. I am also very happy that you feel good and have been able to move on
I'm glad you have settled in somewhat and made your decision. I felt the same about chemo. I looked at it akin to insurance...that I did everything I could to kill off any leftover cancer cells. I didn't even try the cold caps for the taxotere? ...to keep my hair. (BTW it grows back in about 3 months. ) I wanted the drugs to reach everywhere. I could tell when the drugs completely left my body when my allergic rash came back. Not sure if your chemo is intravenous like mine was. At least the cancer was caught early.
Yes, I know if I don't do it, I will be a basket case the rest of my life wondering.... My cancer was stage 2a, and the mastectomy took care of all the breast cancer-none in lymph nodes, clear margins, etc. That is why I was in shock about chemo. Mine will be intravenous and it will be 4 treatments over 12 weeks. I'm not doing the cold cap either-seems like sometimes it works, and sometimes doesn't. But I am going to ask about icing my hands and feet. On one of my support calls, the ladies said that it helps prevent neuropathy(?) tingling of the hands and feet. I will be taking Docetaxel and Clyclophosphanmide, and my insurance just approved Udenyca, which is why my chemo has been delayed. Hopefully I will get a call today to get it started. I just really want to get it done and move on. I'm not happy about the possible long term effects, but I guess it is what it is. As long as I can hike, I will be happy. I am worried about chemo brain---I will be working through my chemo, and I have to very focused on what I am doing, as I have quite a few projects going at once. I can't afford to mess up my job. Hopefully my brain will stay in tact...lol
Same chemo except for the last drug. Ill have to look it up.Yes I iced my hands and feet too. Bought flexible ice packs... Medium size for feet and small for my hands then sewed terry cloth baggies to put them in sadwiching hands and feet. But the facility may have ice packs available to you. I just wanted to be prepared. Didn't buy the online kits. Too expensive. Mine worked fine. No neuropathy..
Thank you so much for that info!!! I will ask that question when they call me! That is something I definitely want to prevent. They need to provide a "Chemo Checklist"..lol
I looked up udenyca and it's the same as Neulasta which I got as a cartridge stuck to my body that goes off the day after chemo. No need to go back into the office for a shot. Just a warning. The third day has the most physical symptoms for me. Stomach issues. Nausea discomfort etc. I timed my acupuncture for the 4 day. Health insurance covered it. Helped A lot! Take the anti nausea even before it gets bad. It takes a little time to work. You might take Claritin too. They're not sure why it works but it seems to. Discuss with Dr.
Hi MelLump, my chemo was Doxorubicin Hydrochloride (Adriamycin) , Cyclophosphamide, and Paclitaxel (Taxol). The Udenyca is the same as Neulasta as Quilting66 mentioned. I started with the on body Neulasta but really didn't like it - it hurt my arm and was quite uncomfortable. I needed to take it for the Cyclophosphamide but not for the Taxol, which was done after 4 rounds of the AC. I asked if I could do a self administered injection and they switched to the Udenyca. To me it was easier to give myself an injection than have that thing stuck to my arm! I did not have much nausea from the chemo and the udenyca keeps your counts from getting too low. I did purchase the ice gloves at my doctors recommendation but the clinic had no place to keep them cold! What a waste of money! My infusion nurse was a doll and brought me bags of ice to put my hands and feet on which helped with the neuropathy. I only did my hands for the first 3 treatments but my feet started to bother me so we iced my feet for the last one. I do have tingling in my feet but it's not too bad and hopefully it will go away soon. I also did not bother with the cold cap - loosing my hair was the least of my worries! And it adds an hour or so to your treatment time, which was already over 4 hours! Best wishes to you.
Thank you for the info! And I agree...my hair is THE very least of my worries. I did ask the chemo nurse if I should ice, and he said to wait to see how I react to the first treatment. They prescribed both the Neulasta and now the Edenuca-that is the one they were waiting on for approval from my insurance company. I am going to ask tomorrow which one they are giving me. I hope the 12 weeks goes really fast!!!
I had the Neulasta pump on my belly which may be better than the arm. Wasn't too inconvenient since I sleep on my back. I also asked after the first dose if I could forgo the steroids at home. It kept me up all night. You may react differently. Good luck and try to stay calm. Getting the infusion is pretty boring. You'll probably be fine day 1 and 2.
Thank you again! They didn't say anything about a pump! But I am glad that my 3rd and 4th day are on the weekend. Hopefully by Monday I will be ok to work. Did you have to take the nausea medication? They gave a a prescription for Ondansetron. I'm hoping I don't need it, but I will take it if I start feeling like I'm going to throw up. The drugs are overwhelming....I've never take anything, not even Tylenol, so the drugs alone are just stressing me out. ugh....well, my bag is packed with stuff to do, and I am brining a few snacks. They said because it's my first time I will be there between 4-5 hours. I hope they have WiFi, but I downloaded some movies just in case. I feel like I am getting ready to board a plane..lol I'm going to mentally tell myself that I'm on a flight to CA, and the only difference is that I'll have an IV, and no cocktails! And I'll be landing right back home...lol
It's not actually a pump. Its a small device like a little pod that has meds in it and at a proscribed time it will self inject into you. I did take the antinausea and it helped. Take it at the first signs. At first my stomach just felt heavy but then progressed. Hopefully you won't need it. Does your center have tv and a refrigerator? You only need the ice packs for one drug. They'll probably do one after the other.
I asked about the Udenyca, and I have to go in tomorrow to get a shot of it. It is always the day after chemo. I finished my first treatment and it was not too bad. I feel ok, but I know by the weekend is when I will start to feel the symptoms. I am truly hoping the nausea is not too bad. I am s=also worried about the fatigue everyone talks about. When does that start? And can you still function if you are working from home?
Hi there, I had a bilateral mastectomy, TC for my chemo (four rounds) , radiation therapy, reconstruction, and estrogen blockers for 5 years. The chemo made me feel bad- but I wasn't all that traumatized by the hair loss and was given pain medicine for the aches it brings on. Really, it went quickly, I used my pain meds only when I truly needed them and I recovered quite quickly. Radiation made me very tired for quite a while. But that recovered as well. Aromitase inhibitors and my reconstruction proved to be my personal nightmare. I know the AIs were a must, but had I known I would endure an open wound due to infection and be strapped to a wound vac for a year I would have happily remained flat! The AIs caused permanant joint issues for me I truely believe. I have not had any of the lung issues you are concerned with, nor have I personally heard that complaint from others in reference to the chemo. More just fatigue and temporary pain issues. Thankfully those went away entirely in time. I would advise doing whatever you can to stay alive....and just know that we all tend to react differently. Besides, its rarely the thing you are looking out for that becomes the problem (its those sneaky side things....lol). Prayers for you while you do your deciding. 😉
Thank you so much for sharing your story! I've had my first round of chemo, and I had a few really bad days (back ache, constipation, diarrhea, bloating), but things settled down a bit. Next week (April Fools day!) I have my 2nd round. I am very nervous about the inhibitors as well, as there are so many side effects with them. I heard other ladies say that those caused more issues than the chemo did My expanders are filled to where I want them (size B) so I won't have my reconstruction surgery until after chemo. I am so very sorry you went through that with your reconstruction!!! I cannot imagine going through all of the chemo and radiation, and finally get to what is supposed to be the "reward"--if reconstruction can be called that, only to have the experience you did.... my heart goes out to you over that!
Are you finished with the Als now? And if so, for how long? How do you feel overall? Is joint pain severe enough to prevent long walks or hiking?
I finished chemo 2 and a half years ago having had 6 cycles of E&C. Although I felt crap for a few days after each treatment cycle, I have never looked back. I feel as healthy as I did before treatment. I was 45 when I was diagnosed with breast cancer. I had an Oncotype of 18 but also had an 18 month old son at the time so that was my main driver to have all recommended treatment! I know this seems strange but I feel very privileged to have had the experience of breast cancer and treatment including chemo and losing my hair as I think it has fundamentally changed my attitude to so many things. Wishing you the very best of luck with your decision and I hope this was helpful.
Thank you for sharing your story❤️I was 40 when I was diagnosed and a mom to a 3 year old. I was so scared about chemo. So scared. Luckily my body responded well and now just getting used to being on exemestane.
It’s so weird with oncotype scores. I had a 41 oncotype score yet I was stage 1b. I had it on 2 locations in my right breast. So maybe that’s why it was so high🤷🏻♀️
Wow..that must have been terrifying. I know.. that Oncotype test is so odd. I wish there was a breakdown of what they actually test and how they come up with those scores. I can't find any info about it and even the doctors don't really know. Makes me wonder.... But I am so happy that you got through it with good results, and are able to move on. Best of luck to you
My breast surgeon gave me a copy of my report. Did your doctor give you a copy? Was it your breast surgeon or oncologist? I clearly remembered I met with my breast surgeon right after my mastectomy. She was so happy and said everything went great and according to her I was ‘cancer free’ and probably wouldn’t need chemo. Of course, I had not met with oncologist who I met a week later. She thought otherwise 🤯and was adamant about my doing chemo and pointed to the oncotype score as evidence that my cancer was ‘aggressive’. Again at the time I thought a 41 out of 100 was not bad. The report says of a recurrence rate of 29% of my BC coming back with just the aromatase inhibitor and no chemo. With chemo is less than 15% and aromatase inhibitor.
On the bottom of the report it shows the ‘quantitative single gene scores’. Even though this was 2 years ago I honestly don’t remember if my breast surgeon went over these scores. A lot of my memory is either clear or very vague.
Either way, I ended up being a good soldier and doing 4 rounds of chemo. I always wonder if I would’ve done it if my daughter wasn’t so young.
Thank you for sharing! It is so good to hear the good stories about moving on with your health. And you have such a wonderful attitude about all of it!
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And I am glad to hear about the women who are still able to be active...that is my primary fear! If I can't walk or hike after this, then I think I would just rather not do it. But I have since heard from a few friends who said they are find, and one had breast cancer in her 30's and that was 17 years ago. She is doing great, is a mother of 3, and is part of the dragon boat team. So that was comforting as well. 
Glad it's starting, but still terrified. I can't stop shaking 
Life after diagnosis, surgery and treatment
Seeking Surgery & Chemo Advice Please
food tastes different?
Testing if Aromatise inhibitors work for you- you might be able to stop taking them 
