Lymph node involvement but chemo not recommended?

Going through breast cancer treatment Chemotherapy
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UK based, if its relevant.

Before I see the consultant againN your thoughts on this would be greatly appreciated.

Medical details:

2 malignant lesions (lesion 1 measured 24 mm on mammography and 12 mm on ultrasound;

lesion 2, measured 11 mm on mammography and 10 mm on ultrasound scan - lesions

were separated by a distance of 6 mm.)

An ultrasound scan of the right armpit identified 4 or 5

abnormal lymph nodes.

Biopsy from the right lymph node

identified a grade 2, invasive ductal cancer, hormone receptor positive (ER8, PR8) and HER2

low, Ki-67 60%.

Core biopsy of lesion 1 in the right breast was a grade 2, invasive ductal

cancer associated with intermediate grade DCIS, no lymphovascular invasion, hormone

receptor positive (ER 8, PR 8) and HER2 negative, Ki-67 40%.

Lesion 2 was a grade 2,

invasive ductal cancer associated with intermediate grade DCIS, no lymphovascular invasion,

hormone receptor positive (ER8, PR8) and HER2 low.

PET CT scan did not show any distant metastatic disease.

Oncotype DX score was 9.

** I was recommended to have a lumpectomy and full lymph node removal, which I had on Wednesday.

I’ve been told treatment will likely be radiotherapy and hormone therapy (rather than chemotherapy) because of the low oncotype score.

BUT…reading more, it seems chemotherapy is normally standard where more than three lymph nodes are involved (and that the oncotype score becomes irrelevant at 3+ lymph nodes).

Any thoughts on this as to why chemotherapy isn’t being suggested? Or whether it should be?

I guess my concerns are that, although nothing was found on the PET CT scan, chemotherapy might be a more definite way to prevent future recurrence or get rid of anything that may already be lurking in wait! **

Thanks for any help, advice, thoughts or guidance!

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Hi,

I’m sorry that you are going through this. I’m not sure what I can add other than my current experience.

I was diagnosed with a grade 2 tumour measured 25mm after lumpectomy and 5 out 25 lymph nodes cancerous. I still haven’t been told if I have a stage of cancer despite having now started chemotherapy. I’ve had a bumpy ride with my oncologist team and am not happy with several things.

However, I was told by a nurse after surgery that it was typical that if 3 or more nodes were involved they didn’t bother with the onco test as it’s a blanket chemo ‘insurance policy’. I still didn’t want to do chemo and have had to be persuaded into it. The first doctor I saw to discuss the treatment plan wouldn’t even do the NHS predict tool until I pushed for it and then she couldn’t even use it properly.

I’ve not seen a pathology report and feel like I’ve been given snippets of information to push me into their recommended treatment plan because of the 5 lymph nodes.

I really hope your experience is a better one than mine but I would say is push them for the answers and if you aren’t happy consider a second opinion.

Wishing you all the best, sending love and support xx

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That’s disappointing @rie1. I thought it was easier to use the NHS Predict tool than cancel your Amazon Prime subscription!

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It came across that she didn’t offer it up as she believed that it wasn’t an effective tool and not up to date at first. When I pushed for her to use it she couldn’t find some of the fields to put information in and myself and the nurse had to point out on the screen where these were.

For myself and not highjack the original poster. As the first (and hopefully only time I ever go through this) I have really learnt that I have had to advocate for myself which has taken away from dealing with the emotional impacts of diagnosis and the treatments and made it more difficult at times.

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Sounds like a very awkward interaction. I’ve consulted with two oncologists on my pathway so far and they were both more than happy to go through Predict with me.

I believe what you’re saying about patients advocating for themselves is paramount to the success of treatment. I’ve certainly learnt this the hard way and find practising this quite empowering, especially when getting results from it.

However I definitely can see how doing this work might take away from the processing of emotional and physical side effects we go through as a result of treatments, especially when encountering resistance from the people who are supposed to be working with you.

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I’ve decided on my next oncologist telephone call that I will be asking for my full pathology report and if there is any more resistance from them then I will be requesting a second opinion despite being in active treatment now as they still haven’t made their minds up on 8 or 6 cycles of chemo and basically leaving it up to me based on side effects.

There are many more areas that they haven’t been supportive with and it’s felt like a battlefield at times with so once I am through the chemo aspect it will be PALS complaint that I will submit. It’s just been a very tough experience on top of what is already a hard time. I feel like they have turned me from ‘glass half full to glass half empty’ mindset which is not great for me

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Hi, you can get a copy of your pathology report from the hospital. My breast care nurse gave me the contact email address. If they are unable to do this contact PALS at your hospital as I’m sure they will help.