Oncotype Score 21, Arm Stretches, and... - SHARE Breast Canc...

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Oncotype Score 21, Arm Stretches, and Cold Caps

meadowseed profile image

Hi all. This group has been very helpful and comforting. As it turns out, my oncotype score for early detected stage 1 BC was 21, and Chemo can help out in the long run (6.5% better outcomes than with only hormone therapy). I am wavering on the decision, mostly because I dread chemo. Working up my courage.. Has anyone here had to make that decision with that oncotype score?

Also wondering about arm tightness, after a lumpectomy. I wake up with a lot of stiffness and pain in my arm. Maybe that's normal and it needs to "warm up" to loosen up. Hard to say what is bringing that sensation - a nerve? a muscle?

Finally, cold caps. Did you use them or not? Experiences? I've read that cold capping helps retain 65% of hair. I already have super short hair, so I don't know what this means.. will I have clumps of hair missing, or does the hair thin out? Anyone with short hair do cold capping?

Thanks so much for your insights.

Jamie

11 Replies

Wow, we have very a similar diagnosis. My oncotype score was 20. Five years ago, when I was diagnosed, if you had a score of 30 or over, chemo was strongly recommended regardless of node involvement . A score like mine (and yours) without node involvement, was considered in the "grey area". I was given the same percentage benefit you were given, however they weren't sure that benefit was worth the potential side effects of chemo. (There was a large study being conducted at the time to answer that question, but the results were not going to be available for a few years)

I agonized over the decision.

I should say here no decision is wrong. Each person is different. Some people want to throw everything they can at the cancer to prevent it from happening again. Others find the potential toxicity of chemo and life-long side effects too much to merit the treatment.

I went back and forth, first I was having chemo, then no way. Ultimately, I opted not to have chemo. I weighed my age, the potential percentage benefit vs the possible life-long side effects(including other cancers). The percentage was not enough for me. It was the best decision I ever made and I have never had any regrets. It also helped that my doctors were very supportive of my decision.

After my second surgery to improve my margins, my underarm was sore/tight and I had some cording (I could feel the strands under my arm). They told me to be patient and allow my arm and chest to heal. After about a month, just before radiation began, I was given some stretching exercises to help with the tightness so I would be able to get into the proper position without discomfort. This also helped with the pain.

Hi,

My oncotype score was 40 so my oncologist recommended chemo. Honestly I felt that 40 was not bad and I hated the fact that I had to get chemo. In my mind, my margins were clear and I had no node involvement I didn’t understand why I had to get chemo but I weighed my options and decided to attack my BC in the hopes it won’t return. Honestly, if I didn’t have my young daughter (she was 3) I wouldn’t have gone through with it because I was so scared about the chemo side effects.

My oncologist explained that because my cancer was caught early and there was no lymph node involvement I would get 4 rounds of chemo: taxotere and cytoxan.

So I did it! I celebrated my one year this past October 🥳 I didn’t have any ‘bad’ side effects from it. Of course you do get tired, you do lose sleep, my memory is not the same, and it send me into menopause. I would get these horrible hot flashes 🤯 They’ve gotten better over the last few months.

My oncologist explained to me that chemo has come a long way abs that there should be no reason why I should be in pain or discomfort. So if I had diarrhea or vomiting to report it right away but thank god that didn’t happen.

Bout the cold caps, so I tried the cold caps. I had long beautiful hair but decided to cut it into a short bob right before I started the cold caps. There are a lot of rules to the cold caps that I did not know and cutting your hair a week before treatment was a no no🤦🏻‍♀️ At least that’s what the guy who was doing my cold caps said to me as the reason why the cold caps didn’t work. My hair started to fall in clumps between treatments 1-2. I was so adamant about keeping my hair that I decided to do it round 2 but it was no use, the chemo was winning and my hair continued to fall in clumps.

I was working through all of this so I had to turn to my wig as I could not go out in public looking the way I did.

I was so disappointed about the cold caps. It was so expensive and not reimbursed. Honestly by the time all my hair fell off I was too tired and exhausted to even care. What got to me was losing my eyebrows and eye lashes. I did cry a couple of times looking at myself in the mirror and seeing myself as a ‘cancer patient’ and telling myself ‘look at what cancer has done to me’.

BUT there is light at the end of the tunnel. I can happily report that my hair grew back🥳🥳 and it grew back darker than ever and is wavy (I had very straight hair). I call it my virginal hair as I now only use natural hair products on it!

So good luck on your decision. You have options and everyone’s journey is different 👍🏼💕

meadowseed profile image
meadowseed in reply to Mmnyc

Hi Mmnyc. Thank you for sharing your journey. I agree; everyone is different. Can I ask about the cognitive side effects you had from the treatment (also, how old are you?). That is one of the effects I'm really worried about as someone who already has some ADD and trouble at work because of it!

Mmnyc profile image
Mmnyc in reply to meadowseed

Hi meadowseed,

I am 42 now. I had just turned 40 when I was diagnosed. I turned 41 when I finished my chemo treatments last year.

Everyone’s side effects are different. My memory is definitely not the same. I do forget things but I also write things down. I’m a teacher so I can’t afford to make mistakes. I realize the responsibility that comes with my job so I jot things down. I write a lot of reports and I am still able to remember all of my ED jargon. I make sure to input all of my medical appointments onto my iPhone calendar.

Again, you may not have this side effect.

After my chemo my oncologist did put me on Anaxtrazole. I did notice bone/joint discomfort. My knees, hips, hands🤯 it’s almost like I inherited the body of an 90 year old woman. I don’t let this stop me though. I’m still active as can be. I typically hit between 10,000 to 13,000 steps a day M-F ( I take weekends off😄).

My oncologist did switch me to Aromasene after 7 months and so far it’s going ok. I did notice some unusual heartbeat? I’m not sure what to call it. I thought it was a heart murmur but I went to see a cardiologist and she said no. 🤷🏻‍♀️

Another side effect is interrupted sleep. That has been my biggest complain, I think it gets the prize honestly. Very annoying!

Dimsdale18 profile image
Dimsdale18Administrator

Good morning Meadowseed,My score was 17 with BC Stage 1 and I was told anything under 25 it was questionable whether the chemo benefit outweighed the side effects. I did not get chemo. That was 14 years ago. However, it is your decision to make with your medical team. Regardless of what you choose to do, you are just a phone call away from speaking to someone who has been through breast cancer by calling SHARE cancer support 844-275-7427. We also have peer matching for specific questions such as cold cap therapy. SHARE also offers support groups and webinars, and all the services are free. sharecancersupport.com

Dale

Breast Cancer Helpline Manager

Hi Jamie, I completed my treatment just a year ago. Chemo and also the arm pain.Chemo first: I dreaded it as well, read everything I could find and watched videos of women who went through it and I must say, it scared the s___ out of me too. But I went ahead anyway and thought of chemo as insurance against recurrence. I decided any advantage to prevent a return was worth unknown side effects. I had 4 treatments 3 weeks apart of cyclophoshamide and docetaxol. I considered the cold caps (you can get a subsidy to defray some of the cost) but in the end I took the chance it wouldn't be too bad. Well my hair started to fall out in clumps between the first and second treatment. I had cut it short in preparation and finally my husband cut it down as far as it would go. I began treatment in late Sept. and finished in mid Nov. My hair started to grow back in Feb. I kept my eyebrows but my eyelashes which were always thin, fell out. My hair grew back curly/wavy, (straight before) and is now about 6" long. Eyelashes also but still thin. I wore caps to cover my head, luckily it was winter. And while the caps did draw some attention to being a cancer patient, so many women offered support and told me stories of their own experience with cancer. I didn't feel so alone. The hair loss is not as bad as you would think. I did buy a wig but only wore it a few times.

The first chemo treatment was awful but I learned to deal with the side effects with the anti-nausea meds and acupuncture which helped a lot. After the first session, I felt really bad in the middle of night after med taken the 2nd day (I've forgotten what it's called , must be chemo brain), but a kind nurse said to call her if I had any issues and she reassured me and suggested to take some over the counter pain killers.

Arm pain: I would up with a serona in my armpit which impinged on a nerve in my arm. I had it drained 2x and after the second, I was much more comfortable. I still do stretches and a lot of Chi Kung which helps calm my nerves (stretch and breathe).

The important thing is to communicate with the doctors and nurses and your community to voice any issues you have. Don't keep it all in and worry.

I hope this helps.

Hi.. may I ask what your Oncotype score was?

Hi, I did not do the Oncotype test because I am Triple negative, ( estrogen hormone negative) which is what the oncotype test is used for. (Estrogen positivity).I had to look up why I didn't have a score that you all were talking about.

I must add that while the doctors don't know why triple negative breast cancer (TNBS) occurs, that was one of the reasons I went with chemo. One of my doctors (I wound up not using him for surgery) said I didn't need it, and another oncologist said it was my choice. In the end, I decided to stay with the breast cancer group where I had surgery and radiation. I just wanted to be sure since no one knew what my cancer stemmed from, and my sister died of a completely different cancer at 63, that I took positive steps against recurrance. Now that it's behind me, I'm ok with my decision. I survived. I'm 68 now and if I live another 10 years, that's fine. Hopefully the chemo gave me a few extra years. That sounds weird, I know, I'm thankful that this came at a later stage of life, I feel for the young women who are burdened with this. Chemo is tough while you are going through it, but look for ways to alleviate the side effects. The first dose is always the worst. But I did read about some women who sailed through without too much discomfort. Hopefully if you decide to do it, you will be one of those. I just didn't want to regret having gambled with my choice. That's not to say that it did me any good, it just gave me a little peace of mind. BTW the reason I didn't go for the cold cap is that one of the places TNBC recurs is in the brain. I figured if I'm going through chemo, I may as well have it hit everywhere. (Tho to be honest, I did use cold packs on my hands and feet to ward off neuropathy.) Good luck with your journey, we are here for you.

I have a low oncotype as well. I was thinking of not doing radiation. Right now I have a 25% chance of reoccurance. With the radiation it will go to 5% just like a mastectomy and chemo. I need 20 treatments.

meadowseed profile image
meadowseed in reply to luv2walk2

I am doing the adjuvant chemo now. It's hard, but not as hard as I thought it would be. Radiation is next. I didn't want to look back and regret not having done more. That said, I had a second opinion and that doctor had said, "Chemo? Don't bother.."

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