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

Hi 

This sounds like a really hard decision for you to make. I can’t make any comment on lobular cancer as mine is ductal. I am also much older - my children are your age - which puts a much different perspective on things. I am currently half way through 6 cycles of chemo & hate each &  every minute. Before each treatment I just want to ‘do a Forrest Gump’ & run & run & run!! My benefit was less than 4% & I had to think very long & hard. But once chemo has been recommended it is so hard to say no. Like most other people I decided that if I didn’t do what was recommended I would regret it & blame myself if a recurrence occurred a few years down the line. I also did this for my family rather than for myself & I am sure family will play a big part in your decision, although for different reasons than for me. What I did do was to have a very long discussion with my oncologist & negotiate a compromise that we were both completely happy with - I chose a shorter course of treatment which may or may not have slightly less benefit  than the longer course & my oncologist was very comfortable with this. 
I hope that others in a similar situation to you will come along to give advice but please do speak as much as you can with your oncologist & tell them your concerns. Nothing is set in stone. Good luck x

Hi Bea,

Mine wasn't lobular,  but my gain from chemo was also 4%. I did have one positive node,  so couldn't do oncotypeDX, so volunteered for the Optoma trial,  which does something similar testing 50% of volunteers to see if they'd benefit from it. Not even my oncologist knows if I was in the 50% given chemo anyway,  or the approx 10-15% tested who'd benefit,  but I was allocated chemo,  which I was then asked if I still  wanted!

3-5% gain is the 'grey area' for benefit vs risk. I've also heard of women with low gain told not to have it,  though I guess the oncotype score (not infallible) and age tips your oncologist to unsure:/

It isn't nice,  or easy,  but there is a chemo thread on here which I found really helpful,  and at times fun! The staff in the  chemo suite were all really nice,  and it was a calm,  relaxed environment.  I cold- capped so spent quite a few hours there each time and took a kindle as well as a book and they fed us.  My reasoning was that I don't want to think 'what if?' If I'd a recurrence.  I'm ER & PR 8/8, HER2-, so hormone blockers also add about 4-4.5% over the same 10 years,  and my oncologist said we're probably more important for me. They cause a lot of aches in some women,  and chemo can leave you with aches and nerve damage so thr side effects might be worse than if you'd not had chemo, but it's all unknown.  I'm taking those, though on a short break after having covid late last year with ongoing symptoms. I've just had the Pfitzer vaccine (first dose) which has caused a worsening of them as well.  

Sorry I've not helped,  but maybe given food for thought?

Hi. Yes I have lobular cancer which is always hr2 positive. When diagnosed

Hi.I too have lobular cancer with hr2 positive and in lymph nodes. When diagnosed my tumour was 5cm.I have recently completed my 2nd round of chemo, which consisted of docetaxel, carboplatin, pertuxumab and trastuzemab. Im not going to lie its been very hard going, but on my oncologist appointment last week he couldn't feel the lump and everything in the breast was soft.. This was after just 2 rounds. Her was very surprised it had happened 

I have read on many threads about chemo not working on lobular, But if it wasn't going ti work went give to us. I am hoping after my chemo ends after 6 rounds I will be having a mastectomy. Im going to take all treatment I can to do my best it won't come back. 

Hi  Bea, its a very difficult decision. I am due to start chemo thursday, I have had an MX for lobular and two lymph nodes positive, lymph node clearance. I am having covid jab tomorrow. My onco said chemo does not work as well on lobular but is still of benefit , the hormone blockers work better. I am in two minds but I am older , 53 and my kids are late teens. If the side effects are very bad I will stop, I think if I was in your position I would throw eveything at it, my onco said eat very well, exercise as much as poss as these women tend to do better with less side effects. I did not think about covid, my onco just advised to get the jab. I hope you are ok and get the guidance you need. Ann x

Hi 

I felt exactly the same as you - I will reluctantly give it a go but if I really can’t do it or the side effects are too much I will stop. I am still going - number 4 this week - and still reluctant but somehow able to get through, one step at a time. 
The healthy eating and exercise is good advice - my oncologist said the same. And every medic I have spoken to since being diagnosed has stressed the importance of exercise in getting through all the treatment and doing well afterwards. 
Hope we have all been of a little help to you . Nobody will tell you it is easy - even if the side effects are minimal it is a huge emotional and mental strain- and yes you do have to put the rest of your life on hold. But none of us want to live with regrets. And as  says there is always the option to stop. And many people do get their plan or their drugs changed if it is all getting too much for them. Just discuss all your concerns with your team. 
Good luck & let us know what you decide. 

Thank you all so much for your responses. It has been really useful and comforting to read your thoughts and experiences. You have all said what I know in my heart I will probably have to do- I couldn't live with the regret if it does come back and I didn't have the chemo. 

I have decided to get a second opinion, before making the final decision, from an oncologiost who specialises in breast cancer. I'll let you know what I do decide in the next few days.

Thank you all again for taking the time to repond. I am surrounded by people that care and are willing to talk this through with me, yet I feel so alone when it comes down to it because no-one I know has ever had to make a decision like this. It helps to read how others made their own decisions. 

Its horrible when it's in this gray area and the margins of benefit are so small.

Usually if we are given the choice, medically whichever way you go is going to be the right decision for you.   But it's what goes on in our heads that really decides the answer.  What can you live with into the future?   Will you be happy and confident not having chemo or will it prey on you?  

Wishing you well x 

I spoke to my oncologist yesterday and he said that, for me, the side effects of chemo would far outweigh the benefits of chemo on my lobular cancer.  He also said that lobular cancer does not respond to chemo and that the only reason he would have prescribed it for me is because I have lymph node involvement.

Hi 

Getting a second opinion is a very sensible decision, especially as you don’t have a lot of faith in the advice supposedly given to you in helping to make a decision. Is your current consultant not a breast cancer specialist?

One tip I saw somewhere was to ask the consultant if they would recommend to their  mother or sister that they should have the treatment they are recommending to you. And the senior oncology nurse did say to me without any questioning that if I were her sister she would be making sure that I agreed to the treatment. 

Good luck and we look forward to hearing your decision