Lobular breast cancer. Positive margins and 1/4 positive nodes

Hi I’m recovering from my second op to give clear margins below and central to the original op site.  I have had first op - lumpectomy , 18 weeks (6 cycles of chemo), 2nd op, 7 rounds of phesgo targeted therapy - with another 11 to go over the following year. In 5 weeks I will be having radiotherapy - five consecutive days of treatment.

my tumour was 22nm invasive her2 positive- negative to oestrogen and progesterone. One lymph was affected with micro pre-cancerous cells.

i feel extremely lucky to have been given every stage of treatment because this gives me the best chance of survival and lesser chance if relapse.

It has been a long road and not over yet but optimism is key

good luck to you

Thankyou for replying so quickly

and in particular for the positivity

i must say I’m now thinking that if they can’t see these buggers under the scan then maybe I’m better off having something systematic to nuke everything they can’t see

Im really terrified of the side effects though. And my children seeing it.

So you had chemo before radiotherapy? How long in total was the chemo ?

how did you manage overall? 

Hi c22

I was in the same position as yourself and told the cancer was in the early stages. Naively I thought radiotherapy would remove it and was shocked to hear I needed an operation. I chose to have a lumpectomy followed by radiotherapy, which my surgeon said achieved the same results as a mastectomy.

At this point I felt like a fraud until the results of the op showed the  margins weren't clear and a small amount of invasive cancer had been found unexpectedly.  I had a 2nd op which was less  nerve racking than the initial one because I knew what to expect. This time  the margins were clear and the sentinel lymph node which was removed  didn't show cancer.

  I was devastated to be told that because the cancer was grade 3 and the invasive cancer was also grade 3 and her2 +  it was recommended that I had chemo and then radiotherapy. At no point had I even considered that I would need chemo, the fact that the unexpected cancer was invasive had completely gone over my head.

I have now completed both the chemo and radiotherapy and still having targeted treatment.

I know that everyone's situation is different, but for myself, I'm glad that I chose to have a 2nd op rather than a mastectomy, the surgeons did a great job. Fortunately the chemo wasn't as bad as I expected, although I did get side effects they were manageable. The nurses do give medication to help with some of the side effects and advice is always available.

The radiotherapy is straightforward and the treatment itself is painless and quick. More time is spent getting into position than being zapped..... I also had the lymph treated and so far fingers  crossed the side effects haven't been too bad, just  a bit of swelling and minimal discomfort. Again, advice is available from the hospital.

Going into the unknown is scary so just take it one step at a time. Find out  information  from professionals not google and then make your decisions. We all worry if we have made the right ones, but  decide on what  feels right for you. 

Good luck with everything

D.D

I had 6 sessions of chemo over 18 weeks - so every three weeks. Side effects - I lost my hair but in a positive note I got a really nice nhs wig costing £450 - but I only paid £80 as nhs subsidised - however temu’s wigs are really good and I have several now. 
I didn’t lose my appetite or sense of smell but everything tasted awful -its a case of experimenting to find out what tastes ok - it was ice cream, mushroom soup and noodles for me. I had one week out if the three where food didn't taste too bad - the week before my next treatment.

The fatigue for me built over the 18 weeks but I rested when I needed to and tried to stay as active as possible.

I stayed away from anyone with infections and was able to keep as well as I could throughout.

i had docetaxol and Carboplatin chemo infusions - it depends on the histology of your tumour as to what they decide you need.

Everyone keeps telling me I look so well so don’t worry xx

Thankyou DD and gloria

 I’m obviously still processing it all. It’s like I’m running a marathon and someone just told me is actually a double one. Now I’m thinking will it ever end.

someone did say on here that you have to look at chemo as the opportunity to knock it on its head and you wouldn’t want to have not been given that chance. 
just feel like I’m back at the start in terms of having to tell everyone this rubbish update. Did you also kind of feel like you were carrying everyone expectations a bit?? I’m just feeling sad and cross and scared I guess. Been putting a brave face on - actually genuinely have felt ok but now……..

how long after you operations did your chemo start??  Is the chemo usually infusions or pills? 

also it absolutely hadn’t occurred to me that the lymph node cancer is a whole new rumour than might have different pathology to the breast one. 
yikes 

it’s all alot! 

Sorry also - did you guys have the oncotype test before you were given chemo?

DD just reading your message again and I’m sorry I think I misunderstood. Did you just have the one tumour in your breast and was it lobular? Was the second tumour in your lymph or lymph’s were clear?

im sorry if I didn’t read your message properly and have replied daftly

Six weeks after surgery to allow you to heal before chemo and mine was infusions. My targeted therapy Phesgo is an injection every three weeks.

it is really good that so much research has been carried out - the tumour type can be identified and specific treatment given - which gives a far better outlook than there used to be

Gloria thank you 

how are you doing now? How far out the other side are you maybe it’s too early to ask how you are doing now! 

I was diagnosed in December of last year having found the lump myself.  To be honest I’m not really sure how I feel about it all.  
Im grateful for the treatments and all the research that has made good quality treatment possible but only time will tell.

Im looking forward to getting to the end of the radiotherapy and I’m going to try to incorporate the ongoing injections into normal life and just get on with my life.

Im looking forward to making the most of time spent with my family and getting back to my nursing career and I intend to do this by staying as positive as I can.

Its not a chosen path but we can do it -