Young, Stage 1A, Grade 1- chemo?

I will be 32 in August so we are almost the same age. It is a hard decision and no one knows how chemo will affect them until they are in the middle of it. It was ridiculously harder than I expected and has given me life long side effects, but some people fly through chemo. I wouldn't have done chemo if I did not have 2 cms of tumor in my lymph node. For a 4% difference I would not, but that is only my opinion based on my (rather terrible) experience. I second the fertility issue. They told me I had about an 85% chance of maintaining my fertility but I wasn't part of the lucky 85% I guess. Good luck with your choice. I think it is smart to get a second opinion.

I was 37 at diagnosis and you can see my stats below... Pretty similar to yours! My Oncotype score came back at 13 and 3 different oncologists ultimately said no chemo. 2 opinions were from top-ranked cancer centers. My tumor was also very ER/PR positive and Her-2 negative like yours and they all said that hormonal treatment would be my best weapon. I was on tamoxifen and zoladex to shut down my ovaries for 2 years and recently switched to an AI inhibitor (still doing the ovarian suppression). Data seems to support that this is a valid and effective treatment plan and there are lots of ladies on these boards that do something similar.

Honestly, I do second-guess all the time - especially in the middle of the night when I can't sleep due to hot flashes! 😁 I don't second-guess their opinions, but more that perhaps I didn't push harder. I know what the data shows about Oncotype scores and benefit of chemo, risk of recurrence, etc, but I can't help but worry that we placed a lot of value on that 1 number. I think with a score of 20 and being in your early 30's, I would do the chemo and not look back... Many people say it's not as bad as they expected and more and more are using cold caps to keep their hair too. And there are options around fertility too... That's not to say that there aren't risks with chemo!

As unfortunate as it is, a cancer diagnosis in my 30's will never let me feel safe again - even if the stats appear to be in my favor that this is behind me. I think that for me, personally, doing the chemo would have helped me to believe that "I did all I could." Whether it would have actually made a difference or not will never really be known...

Hugs to you - good luck with your decisions and treatment!

Hi Tiffany,

I was diagnosed at 40 years, so definitely not an early 30s diagnosis. I was breastfeeding and had a lot of dcis and several small tumors, largest was 8mm, all grade 2. My ER and PR were about 80%, with PR stronger. Stage 1. Oncotype dx score was 13 (9% recurrence).

It was an agonizing decision because my stats all pointed to a non-aggressive tumor, but I opted for chemo. Honestly, I don't believe oncotype dx is reliable or valid for younger women, and there are so many factors which affect recurrence that are not included in oncotype.

I finished chemo 18 months ago (4xTC chemo), on tamoxifen now and feel completely back to normal and racing long distances. Probably the fittest I've been. I don't know whether I'll have any long term side effects, but I don't regret chemo in any way, come what may. I was more than willing to suffer life long side effects or disability, anything for the chance of my son having his mother for as long as possible.

You are a young, healthy woman. There are risks with chemo, but it would be unusual for you not to bounce back to normal.

Hi Tiffany,

I am so sorry you are here at such a young age! I was also diagnosed at what my doctors referred to as a "young age" 45. Long story I was diagnosed with Bilateral IDC both stage 1. I had two oncotypes done one for each side. Right came back a 5 no chemo but the left came back at 19. Tough decision. I chose to do the four rounds of TC. Reasoning, I am the type of person that would have worried about turning down a treatment that may help rid by body of this beast. If it comes back, I know I did all that I could. I agree with the above poster that it is quite disconcerting to base everything on one number, especially a number that is still being studied for the midrange group. My MO said before the oncotype my stats would have got me chemo no question, but it was my choice to go ahead or not. The TC did have some SE that were additive for me. Started with hair loss of course and a little fatigue. Round 2 a little more fatigue, Round 3 a tiny bit of neuropathy in my right foot, Round 4 more of the same. So it was doable for me.

Within 6 months I was back to running and sporting a short hair cut. Today I feel pretty darn great. (fingers crossed that this continues for a very very long time lol) In a few days I will have completed two years of Tami with few issues (hotflashes). Good luck in your decision. Do what you feel with make you more comfortable in the future. Go with your gut and dont look back:)

Gully

https://community.breastcancer.org/forum/108/topic...

We have a thread started by annicemd which speaks to the issue of stage 1 grade 1 and premenopausal.

Has your MO discussed with you the results of the SOFT/TEXT trials?

Tiffany,

My experience was similar to Gully's. Chemo was scary and at times I felt quite sick, but I recovered fully within months of finishing.

I recommend to anyone doing TC to ice their hands and feet to prevent neuropathy. I used ice gloves from the hospital and bags of peas and icepacks under my feet in a wash tub. My husband was helping me. I also kept eating ice all during the infusion to prevent mouth ulcers. It's painfully cold, but worth it for no neuropathy. The neuropathy is (usually) temporary, but psychologically, makes chemo harder.

The first infusion was the scariest. For example, I awoke with 'trampoline legs' that night and thought my legs were permanently damaged, but it was fine by the morning. The third day after each infusion was always the worst for me, with flu like symptoms which wore off in a day or two. My main symptom was diahhorea on the first few days after infusion. On my second infusion, I had uneasy breathing, which was the start of a mild anaphylactic reaction to the taxane, but it went away quickly and I was given allergy medication before my next two infusions. On the third infusion, I had a small spot of shingles where they put the cannula, but that resolved in a week. I almost got a cold after infusion 2, so I had to have neulasta shot for my last two infusions, which helps to prevent colds and flus but causes some body aches for a couple of days. My experience with chemo was that side effects would come up and I dealt with them one at a time and got through the uncomfortable days. The hard part is that you don't know which side effects you'll get.

I had put on weight by the end of chemo, but took it off again a few months after finishing. My periods were also absent for 10 months. About 3 months from my last infusion I had a half to one inch of hair and started going without my wig.

At your age, fertility preservation and preventing premature menopause are serious business. I had zoladex injections (gave me hot flushes) every 4 weeks in attempt to protect damage to my ovaries. You might also want to do an IVF cycle and get some eggs or embryos frozen as well as take zoladex injections.

My heart goes out to you. I hope you get all the information you need to make the right choice for you. I see that someone has provided you with the link to a discussion about the SOFT trial, which I believe studied the effectiveness of 2 years of zoladex injections for preventing recurrence, which is another option for you, as it was for me. From memory, most of the women on that thread were into their 40s, if not well into their 40s, so a very different hormone profile to what you have, but maybe there's someone on this site close to your age who can tell you their experience on 2 years of zoladex. Your Oncologist would be able to explain how the zoladex treatment and chemo work in different ways as well.

I think people learn a lot about themselves in this situation. Because I didn't want to do chemo, I found myself tempted to tune into the arguments about chemo not curing anyone, zoladex being as effective, oncotype dx being reliable etc. But personally, I talked with my husband who is a genetic researcher and I read numerous research articles, trying to keep as objective a mind as possible and I just realized that I didn't believe the hype about oncotype. Plenty of people believe otherwise, and they are maybe right, but no-one really knows. In the end, I had to be true to myself about what I really believe based on the evidence that's out there and not give in to my temptation to believe what I want. I also read somewhere, and this is really a rough interpretation but it was something like, there are two types of terminal cancer patients, those who want to go peacefully and those who want to go out fighting. I realized I would be in the 'go out fighting' camp. I think you have to stay true to yourself and your circumstances.

Tiffany,

I discussed the SOFT and TAILORx with my MOs also and summarized our discussion here, if it helps you: http://39andhip.blogspot.com/2015/06/consultation-....

I also want to add that I do not feel not doing a treatment means you are person who is not going to fight the cancer and just roll over and die. There are other important quality of life and health issues that weigh into each person's decision, and sometimes a more conservative route is what is the best for an individual. Ovarian suppression + AI vs. tamoxifen has been semi-recommended to me, but I'm not sure if I will opt to do that. I don't want my cancer to recur any more than the next person, but at the same time, I already have severe joint pain and it is quite possible the former will really exacerbate that. I am not sure the tradeoff of being in a wheelchair vs. a 1-2% additional benefit is worth it for me. That doesn't mean I'm not a fighter, just taking into account multiple factors.

Good for you for getting multiple opinions! You have a tough decision to make. I have to say I've never heard anyone say that just because you're young your risk doubles. That's an interesting statement, because every study I've read (and I've read a lot of them) discusses stage, grade, node receptor status, Ki67, menopausal status, etc, but I've never seen a study that divides patients by age alone.

SummerAngel - I was also told that my age changes the risk of recurrence. I wasn't told double, but to add 'one degree of severity' (I'm 40). I don't think there are really true numbers based on data that you can attach to this, but all the MOs I saw (three total) said pre-menopausal cancer is different than post-menopausal cancer. And it's not just because you are younger, it's also because the cancer itself behaves differently.

Tiffany - Thanks for the update. You do not sound vain at all! Wanting to look and feel beautiful on your wedding day is completely normal. There are programs to help cancer patients with hair, make-up, etc. to look and feel their best. Perhaps someone here can chime in. (I've never used one, but know they exist.) This cancer stuff is hard enough to deal with without a wedding and fertility preservation to take into consideration. I am so sorry. Prayers for you.

I am so sorry for all that you are going through. The fertility issues, on top of everything else, must be so difficult. A good friend of mine was dx at 28, triple negative, and gave birth at 31. She did not do embryo preservation as she had an 18 month old when dx. Does insurance cover any of the costs? I would think that if they covered fertility treatments then preventative treatments should also be covered. Reproductive rights for women are not at the top of anyone's list of priorities however.

Please don't ever worry about sounding vain. Our appearance is a big part of who we are and it truly sucks when our control over it is taken away. I am sure, however, that when you are walking down the aisle your fiance is only going to see the beautiful person that he fell in love with.

Prayers to you, along with a big hug.

39andhip, Maybe it's because I was 45 at diagnosis but I wasn't told anything like that from any doctor I saw, including from the "expert" oncologist at the highly-rated NCI cancer treatment center. I just find it hard to believe without actual data to back it up.

Tshire, good luck to you whatever you decide to do!

39andhip, I think I must have missed it because the cut off seems to be 40-45, depending on the study.

I had my treatment here in Longmont, my PS is in Boulder. I've been extremely pleased! I didn't realize it at the time, but Longmont United is in the process of becoming a certified breast cancer center, which takes a while. They've really got it together, I must say. I also saw two additional plastic surgeons for consultations and got a second opinion done by the tumor board at the University of Colorado Cancer Center (Aurora). Where are you receiving treatment?

Sorry for the hijack, Tshire!

SummerAngel - I also did the tumor board consult up at Anschutz and am having my mastectomy + reconstruction there. But I am in Colorado Springs, just like Englishmummy! Englishmummy - I am a scientist, so my life revolves around data, and I cannot help myself. LOL. I know everyone is different (I had a professor who used to call it the 'n of 1') but OTOH medical/scientific studies and data sets are what have given us life-saving treatments. I think for me personally, reading recent studies on age as a predictor of recurrence (with all other factors, such as tumor size, stage, grade, etc., being held equal) helps me to understand why three MOs have suggested a slightly more aggressive route for me despite having early stage, medium-aggressiveness cancer, and why an MO might recommend chemo for Tiffany (which was the original question). One can certainly choose not to believe data, or look for other data, but so far in all of my searches I have not found any data that say there is a 100% cure rate, which would be the answer I'm looking for. I guess I'll have to keep looking.

And Tiffany, I second the apology for the hijack. I was just very interested in the idea of doubling all of the probabilities based on age so of course I had to look into it.