Thinking about refusing chemo...anyone else?

My situation has several differences, but also a few similarities to yours. In case it helps, here is my story:

My lumpectomy removed a tumor that was 2.0 x 1.3 x 1.2 with clear margins and my lymph node did NOT have cancer. I am stage I. My tumor turned out to be a mix of IDC and DCIS (which is sort of like pre-cancer and is stage 0)

My surgeon said I was not going to need chemo. The first radiation oncologist I saw said I would not need chemo, but that she couldn't start radiation until the medical oncologist said it was OK. I opted not to go with this radiation oncologist since she didn't do "breath holding" or any other measures to protect my heart. I had also made appointments with radiation and medical oncologists w/ MD Anderson. I went to the first medical oncologist appt and she said I might need chemo and ordered the oncotype test. She said the results would take 2 weeks, but got them in about 10 days. But while I was waiting . . .

I had my second rad onc visit. Before my appointment she had the 77 slides from my surgery "re-read" - the re-reading changed my grade from 2 to 3, found lymphovascular invasion that the first pathology report didn't report and also found one area of DCIS that only had 2 mm clear margins. I really liked her and said I definitely wanted to go with her. She did not think I would need chemo so said she would ask the med onc there (this was before my scheduled appt w/ him) if I could go ahead and start radiation.

So, I was marked up for radiation and ready to start. I met with the medical oncologist the same day as my first radiation treatment. He actually hesitated and considered holding off on radiation, but then said I could go ahead and start and that I could do chemo afterwards if needed.

Then the day of my 3rd radiation treatment, the first med onc calls and says my score is "quite high" and that I needed chemo. I freaked out. It took me several hours to get my actual score / report.

Once I got the report, then came the reading and researching. Turns out that my score is 29 which gives me an 18% chance of distant recurrence if I do the 5 years of hormone therapy. Age matters - under 50 or over 50. I am 61, so over 50. What I wrote to some friends that night was:

RS score is 1 to 100 although I don't think I've heard of anyone having less than 9 or as high as 100. Using this score and age, they figure out chance of getting cancer again if I take the hormone blocker type pills. Using this score, but ignoring age, they figure out how much doing chemo will help (sort of).

For people over age 50, a score of 25 or below has no real benefit to doing chemo. For those under age 50, the benefit for those with a score of 15 & under have no real benefit, those with score of 16 - 20 have 1.6% benefit and those with score of 21 - 25 have 6.5% benefit of doing chemo.

Now the confusing part - the box that says Absolute Chemotherapy Benefit says RS 26 - 100 All Ages and the number is > 15% At first glance, it would appear that there is a 15% reduction (or more) in chance of distant recurrence if I do chemo . . . but . . . reading the "fine print":

On the front it shows that the chemotherapy benefit for scores 0 - 15 is the same no matter the age. Then for scores 16 - 25 the benefit is much greater for patients age 50 and under. I am 61. For scores 26 - 100 they both just say > 15%

Looking at the 2nd page it goes into the two studies and the results of these studies. It says "The magnitude of the absolute benefit of chemotherapy was ~ 6% at RS 26, and increased as the RS results increased from 26-100, with an average absolute benefit of ~ 24% and a conservative estimate of > 15% based on the width of the confidence intervals."

Reading the above, it seems to say that at RS 26, the benefit is 6% and the average of the benefit from RS 26 to RS 100 is 24%. The > 15% on the report is based on the study of all people from 26 - 100 and is NOT the benefit for someone with RS 29. If the benefit increases flat line, then the benefit to me at RS 29 would be about 7 1/2% so my chance of distant recurrence is 18% if I don't do chemo and 10 1/2% if I do chemo.

Also, given that the benefit for those over 50 years is less than the benefit for those 50 or under when the oncotype score is under 26, it would seem that the benefit for those over 50 would also be less for higher oncotype scores which would mean my benefit would be less than 7.5%

Sorry the above was so long, but wanted you to see the though process and also know ahead of time that if your score is above 25, the "> 15%" benefit from chemo may or may not be real.

Since then, I've done more reading and research and was able to find a site that had a graph showing approx chance of recurrence with and without chemo for the various oncotype scores. I also found a booklet that said that 26 - 30 might not be advised to do chemo depending on other circumstances.

I did meet with the second med onc again and he does want me to do chemo after I finish radiation. He did say that he understands if I choose not to do radiation. I am 75% through w/ radiation now and only have the 5 boosts left to go. I have until July 26th to decide if I will or will not do chemo.

As of right now, I am planning to skip chemo but will start the hormone therapy and do other things to hopefully reduce my risk of distant recurrence like exercise and maintaining a healthy weight.

I was a bit concerned about side effects after seeing pictures of raw oozing burned skin on facebook, etc. I kept reminding myself that the people who were doing well were out having fun, not posting pictures.

There is a "newish" protocol for some people called "hypofractionated" -

https://www.breastcancer.org/research-news/benefits-seen-with-shorter-radiation-regimen

buried in the article it gives the % occurrence of various side effects using hypofractionated and regular radiation. I qualified for the hypofractionated protocol which is the same total amount of radiation, but more is given at each treatment so there are less total treatments.

If it is your left breast that is involved, be sure to ask what they do to protect your heart. I ruled out the closest, very nice, facility because they didn't do the "breath holding". I've read in the facebook group that some do breath holding using a snorkel like device. Where I am going, they project a picture on the ceiling that includes a rectangle. When I hold my breath, a yellow bar goes up into the rectangle and my goal is to keep the bar in the top half of the rectangle.

The 2 mm margin found on the "re-read" earned me extra boosts and the lymphovascular invasion earned me "whole breast radiation".

Start now practicing lying flat on your bed w/ both arms extended over your head for several minutes at a time. This will stretch out any muscles that need it

After meeting w/ the rad onc, I had an appt for "simulation and mark-up". The table is hard, but covered w/ a towel and they had two things for my knees & lower legs. They offered me a warm blanket to cover the bottom half of my body (left my shorts & shoes on). Once you are in position, you have to stay still for a while (but only about 15 minutes during subsequent treatments). They marked on my with red & blue markers and put clear tape over the marks so they wouldn't was off. The marks are longer than the tape and they will permanently stain whatever you put on (bra for me) after that. Then I got 6 very small tattoos. Only the last was painful and it wasn't worse than getting a shot. Different places do it differently - others have reported that tattoos are around the breast. I have two on my center line and two on each of my sides.

Each visit, I change into my "smock" (sewed for this facility by a local church - velcro front and both sides) and then wait for them to call me. Go in room, lie on table, they open smock so top is totally exposed, cover waist down w/ warm blanket, and have me raise my arms above my head. Then they position me and leave the room.

They can see & hear me and I can hear them when they want me to. They start by asking me to take a breath and hold it and then they do a regular x-ray to be sure everything is ok. Sometimes the bed then moves very slightly and they do it again. Then the actual radiation starts - two short and one longer time of holding my breath until they tell me to breathe. After that they come in, move the bed a bit and the machine moves from above my right side to below my left side so they can "shoot" the other direction. They leave and we do two short and one long again. Then I am done unless they need to remark me if tape is coming off (or gone), etc. Other than stretching of the muscle and sometimes a feeling of pulling closer to nipple from raising arms, I don't usually feel anything during radiation. One time I thought maybe I felt weird feeling during one of the longer ones but didn't happen next time.

I read LOTS of posts on facebook and every time someone posted that they did NOT burn, I wrote down what they did I tabulated it all - Glycol Base and Aquaphor and one other that I don't remember were favorites as was 100% aloe vera gel. Most who didn't burn seemed to start moisturizing before, so I started as soon as I knew I was going to do radiation soon. The other thing that those who didn't burn did was drink LOTS of water, so I have been averaging about 10 1/2 cups of water or more each day.

I didn't have anything but aloe vera burn gel and lubriderm, so used those until I got to the store. The rad onc gave me enough sample sizes of Aquaphor for one application each day during treatment and for several days after treatment. She only told me to put some of that on after radiation each day, but I did my own thing . . . It also took me a few days to get the Glycol Base because I had been told it was at CostCo, but wasn't at my CostCo and had to order it from Amazon.

My protocol has mostly been: In the palm of my hand, I mix 100% aloe vera gel (from WalMart) and whatever else I am using in approx equal amounts. I then spread it over the entire area receiving radiation so from under arm to center of body and from a little below collar bone to a few inches below breast. Ask them where radiation will come out or exit through body - some have reported burns on their backs. Mine goes at an angle from center of body to side almost under arm and then the exact opposite, so back hasn't been affected. Not sure how boosts will work yet - will find out tomorrow. Immediately after treatment, before getting dressed, I use aloe vera and a sample tube of aquaphor (bring napkins and maybe water or something to get it off your hands after applying it). Before bed, I use aloe vera and lubriderm. In the morning, I use aloe vera and Glycol Base.

I'm not sure if it is my protocol or just the way things would have been if I only used Aquaphor after each treatment, but after my 15 regular treatments (last one today), I am darker and starting to get a little red but very little discomfort - none of which is skin level discomfort. I only have the 5 boosts left to go.

Side Effects:

dry mouth - this was the first thing I noticed and I drank maybe 13 cups of water the day after the first treatment because my mouth was so dry. I think the dry mouth has continued the entire time but I don't really notice it - I think it is my "new normal" but maybe it isn't as bad. I looked at this as good as it helps me drink a lot of water.

a little bit of fatigue, but still able to do pretty much everything; some days I go back to sleep for an hour or more instead of getting up the first time I wake up. I read that it might get worse during boosts.

on & off nausea - not real bad, sort of like car sick feeling. It comes sometimes on way home from treatment, other times a couple of hours after I eat, other times before I eat. It hasn't stopped me from eating whatever I wanted and I haven't vomited. It was a bit bad on the way home today and continued for a while. I ended up cooking some crescent rolls and eating them and am fine now. I read that it might get worse during boosts.

I have read / been told by rad onc nurse that my radiated breast will end up slightly smaller and perkier than the other side. However as of now, it is HUGE - significantly fuller than my non-radiated breast. Enough that when I asked a friend a little over a week ago, she could see the difference but said that she didn't notice until I asked her to look. I'm guessing swelling will start going down after treatment is over. I've debated getting bra insert for other side, but haven't. I did wear a top w/ patterns to church Sunday so it would be less noticeable.

pain - 1) after 3 days of treatment, I used my riding mower for over an hour. I was fine doing that but woke up at 11 PM with entire breast hurting. Tried putting bra on for compression as well as different position. I debated prescription pain pill, but took one Advil PM instead a little after 1 AM. I was on computer and at 3 AM realized it didn't hurt and went to bed / sleep. I was afraid that this pain was from radiation, but it hasn't happened again. 2) Rad onc warned that I might get "zingers" like little electrical current feeling things - this happened maybe four times overall (seemingly randomly and not during treatments). 3) Sometimes I will feel a very small amount of pain for a little while - enough that I notice it, but not enough to do anything, and then later will realize that I don't feel it any more. 4) last Friday evening my nipple area (I think - had bra on, but around there) was getting occasional sharp pains. I wasn't sure if they would continue but didn't want to have trouble sleeping so took an ibuprofen w/ dinner and that hasn't happened again.

Bessie, continuing on with the great information you shared . . .

Please take a look at this https://www.oncotypeiq.com/en-GB/breast-cancer/healthcare-professionals/oncotype-dx-breast-recurrence-score/interpreting-the-results click on Node Positive under "Explain to Your Patients". This opens up a document and I found page 6 of this document to be enlightening. I can't post images here, so can't post it for you to see without having to follow the link.

The page says it is the SWOG 8814 clinical study - but the results are similar and show increased benefit as the score gets higher. I found it interesting that chemo actually seemed to have a negative impact for really low onco scores. I wish it went out 10 years.

Thanks Beesie! I've been looking & looking at info trying to get a good grasp of the chance of distant recurrence for my case. I have seen the bottom chart on the page 6 for negative nodes that you posted, but somehow never saw the top chart. I used the positive node page 6 because I figured my chances were the same or better than that. Unfortunately, I am grade 3 (and the things that made me grade 3 gave me the higher onco score) and have / had lymphovascular invasion even though my node tested clean. This graph doesn't show anything really different from the other research I've done, but it is nice to see something else that agrees

To jenni--nobody here is going to judge your decision. I love your well-thought-out, rational approach. I have no doubt you'll get your testing results back and make the decision that's right for you.

And I have to give yet another shout-out to Beesie. I don't say it often, but you are a tremendous resource for so many women on this forum. I'm so impressed that you always take the time to do the research, post information, and ask key questions. I'd like to think I won't have any more decisions to make, but it's good to know there are smart women out there helping the community if I do.