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Stage 1 lobular breast cancer, anyone no treatment after surgery?

Posted by wyowyld @wyowyld, Feb 23 11:49am

I am one week out on my lumpectomy and according to recent statistics, have a 5 to 7% chance of recurrence in the next five years with this type of cancer without treatment. I cannot imagine putting my body through all the side effects of radiation and AI treatment when I have a 95% chance of nothing happening. Apparently with this cancer the risk is late recurrence, after 10 years. I am so torn and stressed out by the decision I have to make. They asked me to make it in the next two weeks. Am I the only one who has considered not taking any other treatment after surgery because I honestly believe there will be big advancements in that period of time?

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Profile picture for timely
timely | @timely | Aug 6 11:38pm
In reply to @flygirl747 "Yes, 1A,ILC. Oncologist at M.D.Anderson said no radiation for us older folks, too hard on the..." + (show)
Profile picture for flygirl747 @flygirl747

Yes, 1A,ILC. Oncologist at M.D.Anderson said no radiation for us older folks, too hard on the body. Harvard study also backs this up. I had been recommended five weeks of radiation/five days a week at another institution before testing. Dr was on the business development committee. Same Dr sent me to two other doctors, they both asked why I was there, not needed. Again, business development and referrals. Ugg

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So, what is the age cut off for radiation now?

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anatomary | @anatomary | Aug 7 12:13pm
In reply to @peggydobbs "I have DCIS with invasive cells, stage 1a, grade 2-3 (not lobular BC). Even before surgery,..." + (show)
Profile picture for peggydobbs @peggydobbs

I have DCIS with invasive cells, stage 1a, grade 2-3 (not lobular BC). Even before surgery, the surgeon said that she didn't do Oncotype for people over 70. I'm 80. After 2 surgeries, medical oncologist said I could have Oncotype done but would have to wait a month to get the results. I could not start radiation until Oncotype results were received. By this time more than 3 months had passed since the cancer was first discovered. So I decided not to pursue Oncotype testing, assuming that because I was 80, my cancer was probably not very aggressive. After radiation, I started aromatase inhibitors but tolerated them poorly.

I went to a 2nd medical oncologist (at a different cancer center), asked her for Oncotype test and she ordered it. My hope was that my score would be low and that it would be safe for me not to take aromatase inhibitors. Instead, my score was 29 (higher than I'd hoped for!). So, in addition to anastrozole, I am just now starting Kisqali (ribociclib). My conclusion: older people can and do have (relatively) aggressive cancers and should have Oncotype (or other genetic tests for their tumors). Age should not be the deciding factor.

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Agree - many people live into, and some beyond!, 80 so treating the aged differently needs to change.

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anatomary | @anatomary | Aug 7 12:16pm
In reply to @flygirl747 "Yes, 1A,ILC. Oncologist at M.D.Anderson said no radiation for us older folks, too hard on the..." + (show)
Profile picture for flygirl747 @flygirl747

Yes, 1A,ILC. Oncologist at M.D.Anderson said no radiation for us older folks, too hard on the body. Harvard study also backs this up. I had been recommended five weeks of radiation/five days a week at another institution before testing. Dr was on the business development committee. Same Dr sent me to two other doctors, they both asked why I was there, not needed. Again, business development and referrals. Ugg

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Hmm, how many people were in the study and what was the duration (number of years ) of the Harvard study? Data can be interpreted multiple ways- and one study should not dictate medical protocol.

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health77 | @health77 | Aug 8 9:17am

I am finishing radiation next week.I will have had a total of 30.It is very easy and no pain involved.I drive to and from the Cancer Center and I believe that radiation is a good way of destroying any cancer cells.I have had a lumpectomy and my Oncotype DX was only 23.No chemo necessary. Radiation at least for me was the proper way to go.

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jdwelch2025 | @jdwelch2025 | Aug 9 8:59pm
In reply to @flygirl747 "What I have found in my treatment is everything is so siloed. Each area has it's..." + (show)
Profile picture for flygirl747 @flygirl747

What I have found in my treatment is everything is so siloed. Each area has it's own narrow part in treatment.

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I found the same thing to be true. It’s criminal that it’s so hard to get a holistic understanding of all treatment options especially when patients need to make rapid fire decisions and getting information on different options is a struggle.

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anatomary | @anatomary | Aug 10 4:43pm

I was high risk for breast cancer developing in either breast so I went for a prophylactic bilateral mastectomy - but had that not been the case and my risk score was low for my non-diseased breast I would've conserved it and probably would not have done radiation chemo in the hopes that I would not fall into the 5% and there would be better treatments in coming years. So you are not alone, but I wasn't actually faced with the decision. Hopefully other others with prognosis similar to yours will chime in. Good luck with making your decision.

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lynnn | @lynnn | Aug 10 8:35pm
In reply to @timely "So, what is the age cut off for radiation now?" + (show)
Profile picture for timely @timely

So, what is the age cut off for radiation now?

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so I had radiation after a lumpectomy in 2020. Then a cancer in the other breast and more radiation in 2024. I am 87 now so 86 at the last one. It was not hard on my body, and I would have been shocked had my age
been a determinant. Then had TKR four months after the latest lumpectomy.
All well from the cancer but the knee causes night pain.
Otherwise no health issues.

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kaykerz | @kaykerz | Aug 10 9:30pm

I based my decision on whether the lymph nodes were clear or not. Both times that I have had BC, (right side was invasive ductal, left side was invasive lobular) both were Stage 1, no lymph nodes involved so I opted for a lumpectomy followed by radiation each time. No drugs. My radiation experiences were both easy with no skin issues. I feel radiation is important to kill any microscopic cells that could still be lurking somewhere in the breast. Today I feel fine and my routine mammograms and MRIs are clear.

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timely | @timely | Aug 12 9:19am

@kaykerz

Are you on Aromatase Inhibitors?

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kaykerz | @kaykerz | Aug 12 10:31am

No, I am not taking any drugs for cancer. I have a low Onco score and no nodes involved so did not want to deal with the side effects. I am a busy 75 yr old.

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