Lobular chemo small benefit help šŸŒø

Ask our Nurses your questions
1

Hi everyone, Iā€™m hoping to hear from women who have been in a similar grey area regarding chemotherapy.

Iā€™m 47 and have invasive lobular breast cancer. My final pathology was:

  • 25mm invasive lobular carcinoma

  • Grade 2

  • ER 7/8, PR 8/8

  • HER2 negative

  • No lymphovascular invasion

  • 1 out of 2 sentinel lymph nodes positive, with a 3mm macrometastasis

  • Breast-conserving surgery with re-excision for the margin

  • Radiotherapy and long-term endocrine therapy planned

My case has been discussed at MDT and chemotherapy was recommended, but when I spoke to my surgeon she explained that the PREDICT benefit from chemotherapy is only around 2% at 10 years. She described it as very much a grey area and said it was worth having a proper discussion with my oncologist before deciding.

Oncotype was also mentioned, although I would have to pay privately for it.

I had mentally prepared myself to decline chemotherapy when I understood the additional benefit was around 2%, but seeing ā€œchemotherapy recommendedā€ from the MDT has frightened me and made me question myself.

Iā€™d really love to hear from anyone who was pre/perimenopausal, ER+/HER2āˆ’ (particularly lobular), had 1 positive node and was given only a small absolute chemotherapy benefit.

What did your oncologist recommend? Did you choose chemo or decide against it? Did you have Oncotype or another genomic test? If you declined chemo, what endocrine treatment did you have instead, and how are you doing now?

Chemo? How did you decide?
2

Hi @jools11 , you might also like to post this in another part of the forum maybe the chemotherapy section to get others experiences ? As this is the ask the nurses section of the forum once they have replied to you others wonā€™t be able to comment . Hope you come to a decision you feel comfortable with .

3

Hi @jools11,

Thanks for posting. As @Jill1998 has said you may find it helpful to post on another part of the forum to hear about other peopleā€™s experiences that are similar to yours.

Treatment for breast cancer is tailored to your individual situation, and whether you are offered chemotherapy depends on a number of factors including the grade, size and stage of your cancer.

As you have said treatment recommendations are discussed and agreed by a multi-disciplinary team. This sometimes includes using a computer programme such as NHS Predict to estimate what benefit might be expected from treatments such as chemotherapy and hormone therapy.

The programme uses individual information about you and your breast cancer alongside data from large research studies. Sometimes itā€™s very clear that someone may benefit from having chemotherapy. But in other situations, it may be less clear. Your oncologist can explain what your results mean and whether having a genomic test would be recommended in your situation. These are tests that look at groups of genes found in your breast cancer. They can identify how likely the cancer is to return (recurrence) and if you are likely to benefit or not from having chemotherapy. You may find it useful to read our information about Oncotype DX. Itā€™s not clear why you would have to pay for this test as it is usually available on the NHS if suggested.

You mention that endocrine treatment has been recommended. The type and duration of treatment will depend on your individual situation. Your oncologist is best placed to discuss this with you.

We offer a range of free supportive services which you may be interested in. They include face to face and online courses and events. Sometimes talking to someone about their experience of deciding whether to have chemotherapy can be helpful in addition to posting on the forum. Our Someone Like Me team can put you in touch with a trained volunteer to talk to. You can ring the Someone Like Me team on 0800 138 6551 or email them at someone.likeme@breastcancernow.org, so they can then match you to your volunteer.

Do call our helpline if you would like to talk this through or have any further questions. The helpline team have time to listen, talk things through and signpost you to additional support and information if necessary. Your call will be confidential, and the number is free from UK landlines and all mobile networks.

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Best wishes,

Carolyn

Breast Care Nurse

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