Diagnosed with Grade 3 Pleomorphic Lobular BC

Diagnosed with breast cancer Recently diagnosed with breast cancer
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I have been diagnosed with Grade 3 Pleomorphic Lobular BC. I have had a mastectomy which showed I had a 40mm tumour and lymph nodes were clear. The pathology results are now showing it is Pleomorphic which is a rare and aggressive subtype of Lobular BC. I am waiting for the results of a Oncotype DX to determine whether I need Chemotherapy. Can anybody share there experience of this type of cancer. Thank you.

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Dear @hopeless Iā€™m afraid that I have not had a similar diagnosis so cannot give you any specific reassurance but I wanted to welcome you to the forum even though itā€™s the last place that you want to be.

I also wanted to suggest that you call our nurses on 0808 800 6000 as they are extremely experienced (as well as being lovely and good listeners) and may have some knowledge of your type of cancer. I hope that you get some responses but if it is a rare type, there may not be a lot of women who have had it active on the forum at the moment.

The nurses phone line is unfortunately closed until 9am on Monday but please call them between 9.00-16.00 M-F and 9.00-13.00 Sat.

I am quite saddened by your user name and suspect that you are at a very low ebb emotionally. Keep posting here even if we donā€™t have your exact situation there are many who have Grade 3 carcinomas who can empathise and phone the nurses on Monday. Sending love.

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Hi Tigress, thank you for your reply. I did ring the nurses today and they were very supportive and did help me. It is just having somebody to listen too. It feels like I have now had a new diagnosis of cancer, first they thought it was Lobular Cancer and now it is Pleomorphic Lobular Breast Cancer which is very rare and aggressive and outcomes are not good. Thank you for taking the time to reply.

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Hi @hopeless Iā€™m glad that you found some benefit in speaking to the nurses. You can call them any time you feel the need.

I am not a medic and had not heard of pleomorphic lobular breast cancer before so have done some reading up on it, and, yes, less than 1% of invasive lobular cancers are this type. No wonder you are feeling bewildered by it all.

Can I ask what sort of age you are (no need to say if youā€™d prefer not to) - I was 66 at diagnosis and am now 2 weeks off 70. I hope that you have good support at home and amongst family and friends. Truthfully, many donā€™t really ā€œgetā€ it which is why specialist support like this forum and the nurses is so important. Another very good resource for support are Maggieā€™s Centres, where you can just drop in. You can find if there is one close to you by clicking here https://www.maggies.org/our-centres/?postcode=W13+8EA and putting your post code in. I know it takes a lot to walk in to a strange place when you are down at heart but Maggieā€™s people will sweep you up and make you feel at home. I do hope you have one near you.

I wish you luck with your treatment and hope to hear how you are progressing when you feel able to give us an update.

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Hi Tigress,

Thank you again for reaching out to me it does mean a lot.

I actually feel guilty feeling this way as the cancer diagnosis is getting in the way of my grieving for my wonderful husband who died suddenly 10 months ago - we had been together for 48 years and I am totally devastated.

I am 69 years of age.

We have no children so support has been through nieces and other family members. They have all been wonderful.

I also have had secondary losses since David passed away. Unfortunately some close family members have acted inappropriately since the passing of David and it has made my grief harder to bear. Life is tough for me.

Thank you again Tigress and good luck for your continued good health.

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Hi. Iā€™m so sorry to hear of your loss and now this. Life seems to throw us a lot of rubbish at the same time. I was diagnosed with pleomorphic lobular last year. Like you, it was lobular and then pleomorphic, so went from grade 2 to 3. Mine had unfortunately spread to a handful of my lymph nodes. I did what you have probably done, which is Google it. In a state, I spoke to the surgeon, who assured me that the aim was still to treat me with the intent of seeing it off and it never returning. Because itā€™s more aggressive - for lobular - the treatment regime was more aggressive. I had surgery, chemo, radiotherapy and am now on Letrozole, Abemaciclib and bone infusions. Iā€™ve just had a six month check up and all ok. I donā€™t really think about the detail of it all now. I just hope it is all done and doesnā€™t come back. You are at a time when you donā€™t know what to expect. Once you know, things will hopefully feel more manageable. Take care of yourself. x

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Hi Flojo,

Your cancer journey looks like the one that I will go through. I did not expect anyone to reply who has PLC because it is so rare.

I am waiting for the results of the Oncotype DX results to come back, but I expect to be advised to have Chemotherapy. Can I ask you how much chemo you had and how bad was it. Also, can you tell me your thoughts on Radiotherapy and Letrozole. It would be much appreciated. I wish you continued good health.

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I think if you search on here for pleomorphic, there are a few people like us. I had six rounds of chemo - once every three weeks - but mostly because of the lymph nodes affected. It was actually ok - not great but more do-able than I was expecting and the time goes very quickly. I felt slightly queasy twice and mostly just felt tired. We are all different though. Radiotherapy was tiring and a bit dehumanising, but you get through it. And Letrozole for me has been ok. I have a few side effects but nothing major. Iā€™m 61 so I think that helps! Let me know how you get on and feel free to message. x

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Ah we have a lot in common @hopeless. My husband developed Motor Neurone Disease and it was 10 months between diagnosis and death. Ten months is probably more than you had but it was a shocking and filthy disease to witness. Fairly soon after, I became the carer for my beloved mother who lived with, and died from, dementia. I was in deep grief about both of these losses when I had my BC diagnosis however my diagnosis was a grade 1 IDC with some DCIS so not as worrisome as yours. I have no children either so worry more about developing dementia with no-one to take decisions for me than I do about the cancer returning. All we can do is keeping putting one foot in front of the other really. I am so glad that you have found @flojo and hope that you can turn yourself from ā€˜hopelessā€™ to ā€˜hopefulā€™ before too long.

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Thank you so much.

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Hi Tigress,

Thank you again.

I am so sorry to hear of the losses of your husband and mother, life is so cruel.

Good Luck and Good Health to you.