Got my results - please help, I don't understand

Post on behalf of Janeypaney
janeypaney says on 29 Feb 2012 18:26

hi im trying to write a new thread not sure how, my question is that ive had results today via mail lobular grade3 9cm vascular invasion negative 5 out of 15 nodes affected with extra capsular spread er+ her2- help i dont understand im so scared jane xxx

Janepaney ,
Welcome to the Forums although I am sure you , like all of us , would rather not be here. You results have shown you have a lobular cancer. That is a type of breast cancer that often doesn’t show as a lump, just a thickening. They are often the same sort of size as yours because they also can be undetectable on mammograms. The Histopathologist has looked at the tissue removed at surgery and seen cells that are Grade three. The grading goes from one to three. Grade one is most like normal cells dividing quite slowly and grade three more active. This has all been removed. Although you don’t mention clearance margins. There was evidence of the cancer cells trying to escape from the breast and being caught in five of your lymph nodes. Some have grown outside of the nodes again not uncommon and the area has been removed. These results determine your future treatment. Because of the nature of your cancer and the lymph node involvement you will probably be offered chemotherapy. This treats the whole body via the blood stream and will hopefully knock any stray cells on the head. You are also oestrogen receptor positive which means you can have the added benifit of hormone treatment for five years following your chemotherapy . Your type of cancer feeds on the female hormone oestrogen. The drug you will be prescibed will either stop you making this hormone or block its activity thus starving any circulating cells or blocking the way of feeding the cancer so the cells die. Both chemotherapy and hormone therapy are used to increase your chance of getting rid of the cancer. You may also be advised to have radiotherapy and this too has recurrence and survival Benifits.

This is too much to take in today. I remember the devastation I felt when seeing my results. I too had a Grade 3 large tumour with lymph node involvement. However, so did four of my really close friends and they are 24, 18, 14, and 9, years down the line and free of cancer.
You might like to ring the Helpline who are wonderful at explaining things and used to tears and fears being
expressed. They can also send you a copy of the booklet Understanding your Results. This can also be downloaded from this website. I think talking them over with somebody eho can explain things for you to be of most help. Perhaps your Breast Care Nurse would go through your report if you give her a ring. She is ideal because she will know your history and what treatment may be offered to you. This will help you understand better enabling you to discuss your future treatment with your consultants being fully aware of what they are suggesting as the Gold Standard treatment for you.
I am sorry this is such a rambling answer but I didn’t sleep much last night. I got my head stuck in a good book.
You will get so much help here from others who are going through or have been through the same as you.
A big Hug from me. It will get better and you will cope with the treatment but it is so scarry at first.

Jane you really need to discuss the results with your consultant and agree a treatment plan - also the helpline here is excellent in advising what next.

basically it means that you have grade 3, lobular cancer. 9cm tumour with no vascular invasion (which is good). you have 5 nodes affected and you are ER positive and HR2 negative which basically means that you will be able to have hormone theropy (which is good) and won’t need Herceptine. It does sound very frightening when you see it written down and thats why you need someone to go over it with you - ring your BCN urgently to discuss.

If it helps I had a 9cm tumour with 9 out of 24 nodes affected I was ERpositive too and HR2 negative. I did however had vascular invasion. I am two years down the road now - had Mastectomy, chemo and rads and now hon hormone theropy - in fact just had a reconstruction and am feeling fine and on top of the world. So there is light at the end of the tunnel - it is scarey at first but you will get through it all I promise xxx

Haya Hun, sorry you have joined our group…safronseed & Cackles have given very good advice and help. I can’t add to what they have said, just that I am sending you a hug and hope your oncologist & breast cancer nurse enlighten you further. Good luck and keep in touch with us…xx

Hello Jane,

I hope you have access to a good breast care nurse or doctor who will give you the time and attention to really explain what your results mean. They will know about your individual case and are probably best placed to advise you.

I wish you all the best. I well remember how scary it is to see pathology results in writing so I hope you get some answers from the professionals and it helps you.

hello girls thankyou all for answering my post you have made me feel at ease a little more. when i read the results from the op and it also saying i was high risk i was terrified and also with the capsular spread. i have just had a ct scan and next to have a bone scan cackles did you have to have these too, i have a friend who hasnt had to have them and she had one lymph node involved grade 2 lobular. there arnt many days when i dont feel so scared and i dont handle face to face consultations i go to bits you think they would send my results of the scans via post i just cant handle going to collect terrified of chemo. its so great to here cackles that you are doing well, i wasnt told aboy clear margins but she said that the tumour took up most of the breast initially she thought it was 2 to 4 cm so when i was told the size again it made me worry more. what is the gold standard treatment and what does it mean, how did you feel on your chemo and do you have any tips on coping with it. sorry for so many questions. thankyou again cackles puffywhiteclouds and horsie im sending lots of love to all of you and if i could swap mobiles so i can keep in touch that would be fabulous. thankyou jane xxx

sorry got confused thankyou saffron and so happy your doing well thankyou so much for your reply and could we swop mobile numbers lots of love to you jane xxx

Janeypaney I had lobular too, diagnosed June 2009. I had chemo first to try to shrink a grade 2, 6cm lump. Chemo was 4 xFec then weekly Taxol x12 weeks. Hard but I coped. I was terrified and devastated to get my results after my mastectomy - 16/18 nodes affected. Then I had radiotherapy and am now on tamoxifen. Oh and I had ovaries removed a year ago to reduce risk further.

I’m posting to tell you though that I am currently disease free. I’m high risk, yes, but I feel well and I hope it’s all behind me now. due to have another check up soon. I go every 3 months.