I have just had a second operation to remove margins that were not clear from the 1st lumpectomy. I will get the results of this next week. In the meantime I am also waiting for test results (oncotype dx) to see if I would benefit from chemotherapy. I was originally told I would need a lumpectomy followed by radiation & tamoxifin but now they want to check whether chemotherapy may be on the cards. I am absolutely terrified at the prospect of chemotherapy, cannot sleep & it is constantly on my mind I don’t know what to do with myself. I had a stage 1, grade 2, 2cm, no lymph involvement, hormone receptive tumour removed. Would be good to hear of anyone else in a similar position or anyone who has maybe been through everything to give me some words of wisdom? Thank you in advance. S xx
Hi Sonia
Am exactly in same position. First WLE yesterday (hopefully no second) was given same treatment plan originally now chemo chucked in as a possibility more and more. It’s the way they mention it in passing like it’s just taking an aspirin once a day! Find out on 6th Dec whether it’s just rads and tamoxifen which I’m ok with or the dreaded c word!
Am also dreading needing it and trying to psch myself up just in case. a lot of women say it’s not as bad as they thought and also my friends mum is terminally Ill (not with bc) and is in her 70s and didn’t find chemo too bad so I am figuring if a woman in her position can get through it hopefully me at 41 and otherwise healthy can.
Also my counsellor said to me that if they recommend chemo you can ask for the stats - how likely a reaccurance is if you don’t have it vs if you do etc. And they can’t ‘make’ you do anything if you don’t want it.
Hope this helps. Rebecca xx
Thank you for your response Rebecca & best of luck with your results.
I think Chemotherapy is the thing that most people dread the most & this whole waiting game is just torture.
I will keep everything crossed for both of us
Sonia xx
Thank you for your reply Sue & it is good to hear that you managed to continue working for some of the time during your treatment. I should try to focus my energy on other things such as preparing for Christmas but the fear keeps coming back to haunt me
Thank you for your well wishes & best of luck with everything
Sonia xx
Hi Sue,
Thank you for your email & encouraging words. I m so grateful for this forum & for people like you to share their words of wisdom. As I understand it is stage 1, grade 2, hormone receptive (2cm tumour), i am not sure of anything else (ductal, lobular etc). I had sentinel node biopsy (2 nodes removed) with the first one showing a microscopic cell, i was told however this was nothing (i am guessing because it was th 1st node that had been removed) & there was nothing in the 2nd node. I am just not sure where the chemotherapy comes in if the nodes are clear & it is hormone receptive, stage 1 etc. What was your diagnosis. S xx
Hi Sue,
Thanks for your message, gosh yours does sound like an interesting case, thank goodness there was no lymph node involvement! My started out as low grade from the 1st biopsy which later changed to grade 2 after the lumpectomy. I will get my results from my 2nd surgery on Tuesday & hope that they have managed to get a clear margins this time! Yes it is good that they are doing the oncotype test so now I just have to sit tight & try not to think too much. You must be very happy that your treatment is now over, best of luck with you implant. Thank you for your support & for sharing your story with me. Sonia xx
Hi Sonia, I’m kind of at the same stage as you although I’m just waiting at the moment to get the results from my surgery. My provisional lymph node test at time of diagnosis was clear… I have grade 2 invasive lobular carcinoma and I’m 35. I had a lumpectomy and sentinel lymph node removal a few days ago and am just keeping everything crossed they’ve got it all out and that the lymph node is clear as predicted.
I know I definitely need radiotherapy and Tamoxifen but chemo is a query until results are back. I asked my breast care Nurse about the likelihood and she said it’s not a definite but that younger cancer patients are offered it more readily. It scares the life out of me too as I know people who have gone through it but if I feel it’s going to reduce the chances of it coming back, I’ll be doing it 100%. I’ve found in the short time since my diagnosis that I have more strength and positivity than I ever thought I could have and it’s been getting me through along with the amazing support I have from family and friends, my consultant, Nurses and places like Macmillan and Action Cancer.
I don’t know yet if chemo is a definite, just like you, but try not to scare yourself too much, take it day at a time and know that whatever you have to face, you’ll find the strength to do it and get yourself well. It’s amazing the support that’s out there, this forum included…you’re never on your own with this.
I hope it all works out for you, there are lots of positives there what with lymph nodes being clear etc so try to focus on those.
Best of luck and take care xx
Hi Katrinat,
Thank you for your message & I am sorry to hear that you are in the same position as me. I cannot believe how common this disease is!
It is so true how much support there is around and I particularly find this forum so helpful
You are right regarding the negative node involvement for which I should be grateful
I really wish you all the best with your results and thank you for your positive words
Sonia xx
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Hi Sonia,
Hope you are feeling a little better? My history is a bit different from your but though it might help to hear a little. I was diagnosed with an 8x7 cm lobular bc tumour in 2001, had 12/13 lymph nodes involved. After the op they told me they were unable to get as big a margin as they would have liked, ie under a millimetre.
I remember vividly how very frightened I was and also about having chemo. I had a couple of different chemo’s one after the other, just around that time, because they thought i would get the cancer back quite soon. However, i had quite a lot of cancer free years.
It did come back after about 11/12 years and am now on a chemo which doesnt give me any side effects and the cancer is again on the runxx
i hope that helps, do let us know how things go.
Moijanxx
Hi Moijan,
Thank you for sharing your story with me & I am sorry to hear that your bc has come back
I am pleased to hear that the chemotherapy is not having too many side effects for you
Wishing you all the best
Sonia xx
Hi Blueash,
Thank you for your message which I really appreciate.
Your hair looks amazing! Looks like you have hardly lost any?
When did you finish your chemo & how are you feeling now?
Sonia x
Thank you for your response Blueaah. You are right regarding the Chemo, it is better than dying!
S xx
Hi Sonia how quickly did you have second surgery after you got the results of unclear margins after first op? Just wondering if I get same results on 6th if I’ll have surgery before Xmas. I’m booked to go away for new year which I’ve paid a lot of money for and won’t get back. Rebecca x
Hi Rebecca,
I had my 1st surgery on the 3rd November, got the results on 11th November & had my 2nd surgery on 16th November. Luckily I have private insurance through my company but to be honest I think the NHS would be pretty quick in this situation. Try not to worry too much as usually the 1st surgery is 85% successful, I was just unlucky. If you had to have a 2nd procedure, it is very easy with minimal pain etc afterwards. What is your current diagnosis? Sonia x
Hi Sonia
IDC grade2 ER+. Nothing showed up on mammo or u/s so hopefully it’s been caught early and there won’t be any further need for surgery just radiotherapy in new year and tamoxifen will start at some point. What is this onco test that some people have mentioned? Rebecca x
Hi Rebecca, mine is also grade 2 but not sure if it is ductal/lobular etc. To be honest when I go for my appointments I am so stressed out I seem to miss the finer details of my diagnosis! I have been told however it I the most common form.
The Onco test is to see whether you might benefit from chemotherapy. You have to be stage 1 or 11, ER+, no lymph involvement, HER- to have the test & the score comes back between 1 to 100. If you are 1-20 then chemo would not benefit you, if you are 21 to 30 (I think) then this becomes a grey area as to whether it will or will not benefit you, anything above you would definitely benefit. I cannot stand going for appointments & I seem to have had so many. My specialist is always at least an hour late & I feel physically sick waiting. I am sure I have given myself a stomach ulcer with all the stress. I have an appointment on Tuesday for my latest operation results then a guess another one for the Onco test results which I am petrified about!! S xx
Hi Rebecca,
How did they find your BC if nothing showed up on mammogram or ultrasound? Mine is 2cm
S xx
Hi Sonia
It took 2 biopsies. Possibly with being at the younger end of the scale it didn’t show up on mammo. The first biopsy I was told was inconclusive (although my BCN told me that they knew then) and the second one which was a core biopsy confirmed it. I had previously been discharged by my consultant because he was sure it was a cyst but I was recalled after the first biopsy. When I was told it was cancer I wasn’t told the type of grade and only found that out later but doubt I would of taken it in as I didn’t take it well. My lump which has just been removed was 14mm.
I have invasive dúctil carcinoma (IDC) which is the most common form I think I read 75pc of women with bc get this type. So that may be what you have. At least with it being so common they know a lot about how to treat it.
Good luck for Tuesday I hope you get good results. I go back Dec 6th for pathology results following the surgery I’m dreading it too. I get so worked up with nerves before I go in.
Rebecca x
Hi Rebecca,
I think I may have the same as you. The specialist originally thought it was a cyst so I went of fairly confidently to have a mammogram which like you didn’t show much, it was then clearly seen on the ultrasound. I found out there & then that it was malignant. Your life just stands still, its awful! I was on my own @ the clinic as in my heart of hearts didn’t really believe that it would be BC! Good luck with your results too Rebecca. Keep me posted. Sxx