Hi Blubell7,

I hope you are well and coping with the last few cycles of chemo as best as possible.

Regarding your question on  re excision, following my initial lumpectomy I had two further procedures to clear margins, each time intermediate and high grade dcis was found but on the last procedure they got 1.5 cm clear margins, they aim for 2 cms I’m told. The decision has always been left to me, I didn’t feel put under pressure in any way. They  suggested mastectomy down the line if I wanted it which I’m almost certain I will, waiting for appointment with oncologist to discuss treatment plan but most likely will be having chemo firstly. (Long story short, found lump, diagnosed with grade 3 invasive ductal carcinoma, told its treatable).

I would be very interested in hearing how you are coping with chemo, how many cycles you are having etc, any advice you can give would be appreciated. Hope to try cold capping as will be devastated to lose my hair!

Take care, hope I’ve helped a little,

xx

Hi Linda,

Sorry to hear about your diagnosis, it is very much like mine when I was first diagnosed - invasive ductal carcinoma grade 3 with intermediate DCIS. I had lumpectomy at that time, but was not consulted after it just given radiotherapy followed by hormonal therapy. I was given the pathology report though and a couple of months after the treatment I had a look at it and saw that 1 margin involved DCIS and other one was less that 1mm with DCIS. It made me think that my cancer was never cleared. 4 years later I had a local recurrence and had to go through double mastectomy and chemo. I was never clear of cancer in my opinion and want to put my mind at ease... now after you told me your story, it makes me think I was right all along. Don't know what to do about it...

I was offered ACT 4 cycles AC every 2 weeks and T 12 cycles every week. I used the cold cap and for the first 3 cycles = 6-7 weeks I had hair. Unfortunately, by the 8th week I did shave it off. My advice to you is to cut it short styled jamie lee Curtis.  Cold cap may work better if hair is short. Mine was long and thick and same as you, I was not looking forward to loosing it. I decided to shave ir because I had a few bold patches by week 7.

I hope that makes sense. Did your oncologist suggest what kind chemo would be best for you yet? 

X blue

Linda, are you sure it's cm and not mm? Just checked the pathology report again and I had 3 margins with DCIS at less than 3mm and the other 3 at over 10mm.

I am devastated. How could this happen?

Xx blue

Hi [@Bluebell7]‍ 

Apologies I am only seeing this now and yr right it is mm definitely not cm, typo, hope it hasn’t caused you additional worry! Guidelines 2 mm but my surgeon was satisfied with the 1.5 he got last time.

 Hope u are well and coping with yr last few cycles of chemo. I had my oncologist appointment yesterday and was told since I was low benefit of chemo it would be up to me! Struggling with this now as I didn’t expect it, harsh treatment to go thru with little benefit but if it came back I would be devastated I didn’t take it. It is booked for 27th August but I can change my mind. Initially she gave me info on 6 x FEC-t but then said possibly 4 less toxic cycles but needs to confirm this. I will still lose my hair, they don’t offer cold cap unfortunately which I’m gutted about but as you’ve found it doesn’t always work.

Have you spoken with yr oncologist regarding yr concerns re ur previous margin results? Definitely worth doing so if not., 

Take care and apologies again xx

Hi Linda,

No worries, it's good to hear from you. I haven't discussed the margins with the oncologist. I did bring it up to my surgeon, after I've been diagnosed the second time, but that didn't clear off my concerns. My treatment is going ok, still 3 more chemo cycles to go. Has been delayed due to poor blood test results, but hopefully, I will get stronger and get over it. 

Hard to take the decision to get chemo or not. If it would be me, it would depend on whether or not BC has reached the lymph nodes. Chemo it's a pretty nasty thing, it hits you like a train and you feel derailed body and soul, but you can recover from it. It has to be your decision. It's about whether you can trade an year of your life in return for peace of mind that BC will not return. However, as your doc says, maybe it's going to have too low a benefit... just go with your instinct.

Take care, Linda. All the best.

Xx blue