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.
5 Likes
Dear @hopeless Iām 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 itās 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 donāt have your exact situation there are many who have Grade 3 carcinomas who can empathise and phone the nurses on Monday. Sending love.
3 Likes
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.
1 Like
Hi @hopeless Iām 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 youād 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 donāt really āgetā it which is why specialist support like this forum and the nurses is so important. Another very good resource for support are Maggieās 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 Maggieās 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.
1 Like
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.
2 Likes
Hi. Iām 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 itās more aggressive - for lobular - the treatment regime was more aggressive. I had surgery, chemo, radiotherapy and am now on Letrozole, Abemaciclib and bone infusions. Iāve just had a six month check up and all ok. I donāt really think about the detail of it all now. I just hope it is all done and doesnāt come back. You are at a time when you donāt know what to expect. Once you know, things will hopefully feel more manageable. Take care of yourself. x
4 Likes
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.
1 Like
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. Iām 61 so I think that helps! Let me know how you get on and feel free to message. x
2 Likes
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 āhopelessā to āhopefulā before too long.
2 Likes
Thank you so much.
1 Like
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.
I have had my Oncotype DX test back and it is 10. The consultant has advised that chemotherapy would not benefit me and wants to see me in 6 months.
I have now been referred to Oncology and they have suggested Letrozole for 5 years and Zoledronic Acid infusions every 6 months. I am taking magnesium and vitamin D supplements. Quite frankly I do not want to take either of these treatments due to side effects. The Oncology consultant advised me about the treatments but not the horrible side effects. They have now sent me an appointment for my infusion on the 1st December. I am seriously thinking of not going ahead with these treatments. I am waiting for BCN to ring me back.
I am trying to make these decisions on my own due my tragic loss, any help would be appreciated.
Thank you.
Hi @hopeless all I can say is - and youāll probably expect this - that not everyone gets side effects from Letrozole and you wonāt know if you are one who does unless you try. For full disclosure, I got some vaginal dryness at the beginning, which I dealt with by using over-the-counter creams like Hyalofemme but over time, that has gone away. I also got brain fog but how much of that is attributable to Letrozole and how much to being worn down by similar losses to your own plus a cancer diagnosis, itās hard to say. I have not had joint or muscle pain which seems to be the thing most women who get SE canāt deal with. The main question though is, if you choose not to take the medication, what are the percentage chances of recurrence and spread. Has the oncologist given you any indication of that? Either way, if you choose not to take the medication and you did get recurrence or spread, which would involve much more challenging treatment than the one currently on offer, how would you feel? These are questions most of us ask ourselves and there is no right or wrong answer, just oneās level of risk aversion and acceptance/regret ratio. I would never tell someone to take these drugs nor to not take them, all I would say is, logic dictates trying them for 3-6 months to see. If you decide thereafter to stop taking them, at least there is an evidence based discussion to be had with your oncologist. Iām glad that you will be discussing it with your BC nurse but as her job is one that is 100% focused on treating and preventing cancer and you have clearly other emotional issues informing your choices, I wonder if it might be worth a chat with your GP too as he/she will know what youāve been through in the last year and can take the bigger picture as a starting point. Just a suggestion. Whatever you decide, let us know so that we can support you going forward. Big hugs 
3 Likes
Hi Hopeless
Iām sorry to read how you are feeling. If you are Facebook search for the Metaplastic Breast Cancer page. I too was diagnosed on Friday just gone with a rare and aggressive form of breast cancer and been knocked sideways but that page is dedicated to us 1% and lots of lovely ladies on there who have beaten this beast. My surgeon said I am āspecialā 
1 Like
Thatās good news on the chemotherapy. I am on letrozole and zoledronic acid. I donāt have very many side effects from the letrozole - some achy joints but thatās about it. The zoledronic acid first infusion made me completely exhausted for a few days, but that was about it - thatās quite an easy on in comparison. Also, Iām told, the first is the worst. x
1 Like
Hi All,
Thank you for all of your replies.
I started Letrozole and after 10 days and a telephone call with my oncologist I have decided not to continue with it.
The side effects were grim. Flushes, night sweats, no sleep, dizzy spells, fog, aches and pains the list goes on and this was just day 10. There was no way that I could continue on this medication whatsoever. I know this decision will significantly increase the return of my cancer. My oncologist advises me that the prognosis of cancer not returning for 10 years because of a oncotype score of 10 is based on me taking Letrozole for the recommended time of 5 years.
On a positive note a neighbour of mine who is 88 had breast cancer 5 years ago, Lobular cancer, lymph node involvement and some spread has been on Letrozole for 5 years with no side effects whatsoever and has just had a chat with her oncologist who has advised her to stay on it for another 5 years, she looks and feels great.
Everyone is different.
Thank you everyone for your help and support over my BC diagnosis.
2 Likes
Hi I have jumped in here as am madly googling about lobular and lymph nodes .. I too have been diagnosed with lobular ( and off and tubular ) and one macro in lymph node .. they have advised radiotherapy but not a clearance and I beige radiotherapy is particularly effective for lobular though the idea of not knowing how many further nodes may be positive is freaking me out and like you I am google prone and home in on the negative resulting in a regular meltdown at the hospital .. il on letrozole already and also will need cdk something .. I donāt know about chemo yet .. the whole thing is very scary ā¦ I hope that you are doing well and itās so encouraging to hear of people in a similar situation xx
Thank you so much for posting this message @flojo I have the same diagnosis and have been looking for positive news as I want to try and fight this and am prepared for an aggressive treatment plan. Iām about to hear my plan soon and know it will be everything. Thank you so much for writing this. Sxx
1 Like
Take good care of yourself and put yourself first. Once you get your treatment plan and things are in train, it feels like being on a conveyor belt, but you will feel more in control. xx
1 Like
@flojo Thank you for this - I am hoping that once I start on chemo soon I will feel less like Iām overwhelmed and out of control as you say. I hope youāre doing fine. Sxx
1 Like