Dear Tamsy, I don't have the same cancer as you, but spotted that you'd not had a reply to your post and wanted to welcome you to the forum. I'm sorry to read of your diagnosis and I'm sure someone with a similar diagnosis will be along soon to chat to and share experiences.
Take care, hugs to you, Jo xx
Hi Tamsy, I was diagnosed with the same cancer in 2010. After treatment I have been cancer free since then. I know its a shock to be told this - feel free to ask me anything you want
Hi Jan, thank you so much for replying I was beginning to wonder if invasive lobular cancer is very rare. Not many women have this kind it seems?
I really want to know if it's more severe than ductal and whether I'm more likely to have a mastectomy? Mine is grade 2 and im waiting for more biopsy results and MRI results. What treatment did you have? Did you need chemo?
How long does it take to get over the shock and do you feel you can now lead a normal life? Do you take tamoxifen?
I have so many questions but knowing there is someone there who understands and has been through it is a great help.
I have to wait until next Tues for all the results. The waiting is awful.
Thank you
Tams x
Hi Jo
Thank you for replying. It is so heartening to find people out there who are able to share and understand this terrible time.
I am really struggling but assume and hope I will get accustomed to this awful shock.
Tams
I fully understand your concerns and your need to know more about your cancer. I do not want to worry you more than you already are but equally want to reassure you that cancer treatments today are so advanced and particulary grade 2 successfully treated.
I will try to answer all your questions to the best of my knowledge.
First as far as I am aware invasive lobular cancer is not so very rare although not as common as ductal cancer. It is not more severe however it is not often found as early as ductal as it presents in a different way i.e. not an obvious lump. Mine was grade 111A so a lot more advanced than your grade 11
My consultant advised going for a lumpectomy. when I asked him how many women had to go on to have a mastectomy he was very honest and said that around 30% needed further surgery. He let me make the decision and I opted for the lumpectomy. As it turned out I had to have my right breast removed a week or so later as the margins were not considered safe. I will say though that the way I still see it I had a 70% chance of not needing a mastectomy so made the right decision. A lumpectomy should be just fine for you with such an early grade.
Chemo and radiotherapy treatments usually depend on grades and stages. As I said my cancer was more advanced than yours and my lymph nodes were affected so I had TAC Chemo and radiotherapy following the op. I have also been taking Femera since the op not tamoxifen as I was post menopausal.
All this happened at easter 2010. Much of the remainder of that year involved treatment of some kind (my husband also had rectal cancer at the same time (within weeks of each other) so lots of medical things going on that year. In 2011 both having successfully treated we 'went back to normal' spending lots of weeks in our holiday home in Turkey and generally getting on with life. Now its nearly 2015 and the last 4 years have been quite wonderful - we even sold out house here and bought an apartment on a lovely marina near our daughter.
I truely hope this has helped. I sympathise about the waiting game. Try to enjoy Xmas. Please let me know how you get on, I will be thinking about you.
Jan,
Thank you for replying so promptly. All your information is really useful and I am grateful to know more.
I had my MRI today and then saw my breast care nurse to see if they had any more results from the second lump they found in the same breast (the first was a mass rather than a lump,) but she said they weren't back.
Now I have to wait until the 30th. It's such a roller coaster but I realise everyone goes through this.
It was lovely to hear your positive news and that your life is back to normal and enjoyable!
Hard to imagine that at the moment but everyone says it gets better when you have a treatment plan. At the moment I am so in the dark information /results wise; and of course am fearing the worst.
Anyhow thank you again for all the positive information and thoughts.
Have a very merry Xmas.
Tams x
Hi Jan
I made the decision to have a mastectomy as the second lump found was also cancerous.
I'm having it done next Wednesday. I was told it would be a day case? But I'm very worried about coming home with a drain and coping with it all afterwards. I'm hoping to stay in at least a night.
Can you let me know what to expect regarding pain and recovery time?
How long was it before you had the pathology back from the lymph nodes?
How long after the op did you start radio and chemo?
Have you had many side effects from Femera? Sorry to ask so many questions, I keep forgetting its New Years day.
Hoping you had a good Christmas and happy new year.
Tams
Hi Tamsey, I was supposed to stay overnight but there were so many having the op that day that they asked me to be a day case. It was no problem at all as I wanted to go home. When I woke following the op my consultant told me that they had taken all lymph nodes as the cancer had spread to about 9 of them (20 removed) so I assume they tested them during the op. They put the drain in and when it was time to go they just put it in a pillow case which I carried. Unfortunately ( I was unaware at the time) they forgot to open the drain. Well I went home feeling fine -no pain at all - but over they next day or so it became painful - not knowing what to expect I didn't realise that absolutely nothing had passed through the drain. I rang the breast clinic and they told me to go there. A Lovely nurse there explained what had happened and opened the drain - well as you can imagine quite a lot of 'stuff' came out. The nurse was so lovely about it and couldn't have been more sorry. Anyway after that all was well. I am only telling you so you will understand more than I did about the drain. Recovery was very quick - a matter of days. Next came chemo which is not pleasant but effective!!! That was about a month later. I was told by one of the nurses that if my GP funded it I could have chemo at home - she checked my post code and this was arranged ( Bristol ). Every month for 6 months on the 15th a nurse arrived and set up the drain in my home (every month just before this I had to go to onocology for a blood test which was very quick). If you have to go to oncology to have chemo the timescales would be about the same I should think. When chemo had finished (last one on my birthday!) I waited a couple of weeks then started radiotherapy - which to be honest I considered just fine - no trouble at all - apart from finding somewhere to park!!! Every week day for 3 weeks. The actual procedure only took about 10 mins every day plus about 1 hour finding a parking space ha ha.
Femera does have a few side effects - which I am now used to - and vary so widely that if I were you I should just wait and see how you personally are. I have heard many better and some worse than me.
Good luck with your op on Wednesday - I have no problem answering your questions today or any other day for that matter!!! Please ask away and let me now how it all goes for you on the day. Soon you will be on the road to recovery xx
I am having a radio isotope injection the day before to show up the hot spots in the sentinel nodes; I wonder if that shows all the affected nodes? I think the surgeon said I would have to go back for another op to have the nodes removed if there were alot , I hope not. Your experience of the day surgery doesnt sound too bad at all, apart from the drain fiasco, thank you for making me aware of what to look for. I asked to stay in a night as it seems quite a big op to me and I want them to keep an eye on the drain etc and I gather swelling can be a problem that sometimes needs to be drained. Yes I have been told I can have chemo at home, but it's still the thing I really dread. I t sounds like over all the treatment takes about a year...and going for radiotherapy every day and finding somewhere to park 40 minutes drive away, is going to be time consuming. Its such a lot to face, but everyone sounds so strong about it all. I think the waiting is the hardest part, for results etc and not knowing how much its spread, it is terrifying. I'm feeling pretty exhausted but I have an overactive imagination and am not very good at taking it one day at a time. I suppose once the shock wears off it gets easier and I will get more used to the whole scenario. Its so good to have someone to chat to who has been through it all, so I know what to expect, thank you again the info is really appreciated.
I felt just like you at first and made the big mistake of looking at everything and anything on the internet concerning my cancer type. Some very kind people on this site advised me to stop looking as it only served to sorry me more. Stick with this site and you won't go far wrong - the people here are great. Everyone is worried about chemo - but once again everyone is different - as my oncologist said to me - this is your cancer not everyone elses and we all have good and bad days and no two people are exactly the same. I agree the waiting is the worse thing - imagination runs wild!! Stay as calm as you can and cope with one step at a time. Worry is exhausting! I hope you have a supportive family as I did.
