I need advice. Lobular Cancer treatment plan decision to make.Chemo or not.

Hi Ellabella

A very difficult choice for anyone. But I wanted to reassure you that going through chemo during Covid is okay! I finished my last treatment today after having 8 rounds, and I have junior school age child. Like others I can not comment on lobular, mine was ductal. I prepared for the worse, with chemo, and got through my chemo well. I cold capped so still have hair, I had minimal side affects, and worked from home daily. The choice is ultimately yours  but I wanted to reassure you, if you do go down the chemo route, it’s can be okay xxxx

I have lobular cancer and mine is er+ but her2-. I don't know what hr2 is but mine is not hr2 positive.

We all have her2 in our cells, ladies who are her2+  have more than others and this gives the cancer something to munch on.  Herceptin / trastuzumab is the treatment given for her2+ ladies.

What confused me was the poster using HR2 not HER2.  I thought thats what they meant but one poster said ALL lobular cancers were hr2+ but mine is not.

Hi

my Oncotype score was 21 as well but I’m older than you at 49 - but still under 50 so had a similar discussion. My tumour was invasive mucinous carcinoma which doesn’t respond well to chemo either. My oncologist felt I would get the same benefit from being placed in menopause and treated as if I was post- menopausal as I would from chemo. So I now have monthly Goserelin implants for 5 years and take Letrozole. It may be worth asking if that would an option

All the best

I had ductal with lobular features and definitely her2- 

I assumed it had started as ductal and had then spread to the lobes, but I'm not sure.  

Hi x

i have lobular cancer which was also found in my lymph nodes. I’m about to begin my second round of chemotherapy treatment and you are right, it’s tough. 

I’m 48, otherwise fit and healthy, married and have a daughter. I also work in a school. 

in my experience COVID has nothing to do with it. The covid precautions in place at the chemotherapy unit are phenomenal - if any team understands the process of reducing infection risks they do! Everyone has to have a Covid test before each round, your temperature is checked every time you arrive and the centre is secure and bomb proof!

I was told that I didn’t really have a choice re chemotherapy- but I think if I’d been given a choice I’d have had it. It’s horrible and I’ve never felt so sick with constant nausea, but I was also told to think of it as my friend helping me do everything I can to beat cancer. 

it’s your decision and you are right to do research. I have a brilliant book that was recommended for me called A Complete Guide to Breast Cancer by Trisha Greenhalgh and Dr Liz O’Riorfan but please don’t let fear of contracting Covid be the decision maker for you. 

Good luck x Carrie 

Hello everyone and thank you all who replied since I last posted. I have found all of your advice reassuring and helpful.  I decided to have the chemo. The second oncologist says pretty much the same thing but it was useful nonetheless.  I had my first dose of EC 2 weeks ago.  So far it's not been too bad.  The first week was tough like I was living in a fog with a bad hangover, but this week I feel back to normal.  

My next decision is to whether I should stick with 6 rounds of EC or switch to a taxane after 3 EC cycles.  My oncologist says that the taxane can wipe people out and make me very unwell and will only add another 1% benefit. If anyone has experience of paxlitaxol or docetaxal and how they found it then I'd be interested to know.  My current thoughts are to go for it if I continue to cope well with EC given I've decided to 'throw everything at it'. I think I will probably join the chemo thread and all this question there. 

Thanks again for the advice everyone. 

Hi x for what it’s worth I’m having 3 cycles of taxane after 3 cycles of FEC (I too have lobular cancer). I’m struggling with the side effects of FEC but will go ahead with taxane if I can - I would hate to be in a situation of thinking “what if”. I haven’t had the taxane bit yet so would be interested to hear about any forum users’ experience of side effects too x 

take care, Carrie 

Hello ElleBea

Sorry to read about your diagnosis and dilemmas. I have shared some of my process and thinking in the hope that it might be of some help to you.

I am having chemo at the moment for HER2+ >5cm cancer with one known node. I had 3x EC and have had 2x Docetaxel plus Pertuzumab and Trastuzumab. Just one more cycle to go in a couple of weeks.

I am having the chemo before surgery to try to downstage the disease and to give more surgical options. This was the strong recommendation of both my surgeon and my oncologist. However, I was given the choice to have surgery first - was told that this would be complete mastectomy plus axillary clearance with no reconstruction for now due to Covid. The no reconstruction bit was not a worry, but the complete axillary clearance was something that I would prefer to avoid, providing I don't have to trade-off long-term treatment effectiveness. For sure, I would prefer to be kicking about with lymphodema and not being here at all.  

I dont know if mine is lobular or not.....

However, /I can tell you that there was a huge reduction in size after 2EC and at an MRI after the first cycle of Docetaxol +P&T the thing was only 7% of the size that it had been before. Plus, when I saw the surgeon a couple of weeks later she said that she could not feel anything there at all anymore.

I have another MRI booked for the day after the next chemo. Got my fingers crossed that it will show the lump and node have gone. However, the test will be when they do the pathology after the excision. I am hoping for breast conserving surgery and just a targeted node resection.....if I am lucky.

Chemo is chemo, but the team are great and extremely experienced at helping to modify the side-effects with support drugs. I had a few tweaks along the way. With the latter regime, for me the main issue is a loose tummy. I am managing to control this reasonably well with over the counter meds. every other day. My onc. has said to call her if I need something else. For me the EC was worse, especially the first one, until they gave me extra help meds.

She has also discussed with me that it is an option to reduce the chemo doses to offset toxicity. Effectiveness is dependent on dose, so I have firmly elected to manage the side-effects rather than trade-off the full potential beneficial effect.

I think that the 4% excess risk you were quoted is quite a high excess risk. It works out at 40/1000 and 4,000/100,000. Just compare that to the figures batting around for Covid prevalence..........

I am mid-60s, so much older than you are and my sons are in their 30s. We are all of one accord that I do whatever it takes to try to get rid of this and to remain disease free for as long as possible. 

The chemo thread helped me a lot. Also an overview academic paper found on: http://eprints.gla.ac.uk/143572/ Neoadjuvant therapy in early breast cancer: treatment considerations and common debates in practice. I also looked at the NICE clinical guidelines {English NHS] and the SIGN Guideline [Scottish NHS]. I was satisfied that what was suggested for me was the current evidence-based best practice for my situation.

Good luck and don't feel it is wimpish to complain about the SEs and to ask for supplementary support medications if the standard ones don't help you. We are all different.