Sorry to hear you need further surgery. Sometimes it feels like not much progress is being made but each small step gets you closer to coming out the other side.
There are plenty of occasions where you find yourself having to grit your teeth. The waiting between events can also feel excruciating.
I think it is common that they learn more about the tumour after it has been removed & they have done full pathology. I was first told mine was pure mucinous after biopsy but then some DCIS found after surgery but unclear if enough to make the tumour mixed mucinous. Pure is more favourable than mixed but I had to make peace with the fact that I will never get a clear answer.
Good luck with the upcoming surgery & I hope you don’t have long to wait
Thanks for your reply, so pleased for your great news for the all clear and thanks for the positive vibes which are much appreciated x
Thank you for your reply and informative update it really helps understand what to expect in certain circumstances. Unfortunately I need to have another re-excision operation as the margins were not clear with additional DCIS found. This really got me down as I don’t feel as if I’m moving further in my pathway. I’m over the disappointment a little more now and am hoping this will be ok.
really appreciate your reply and send best wishes x
Thank you for your message. I hope you got good results yesterday re clear margins.
I had WLE in July, started tamoxifen in August & had radiotherapy October/November. My side effects have included sore gums (tamoxifen), tiredness, & in December I found a lump which turned out to be nothing to worry about (either fatty tissue or scar tissue). I sometimes get pain / pulling at surgery sites. Otherwise the most concerning thing for me atm is my hair thinning and wonder if the rate of hair loss will slow down & if it will grow back after tamoxifen stops. I will mention it at my next check up in a couple of weeks.
So far I feel I have got off lightly with the side effects but I am sure it is possible that this may change over time.
Good luck with the treatment. After my surgery my cancer was regraded from 1 to 2 and the mucinous tumour was 29mm so they did an Oncotype DX test to see if there would be a benefit to having chemo. Fortunately I scored under 15 (13) so I dodged the chemo bullet but I feel it was a close shave.
There have certainly been plenty of twists & turns along the way. Fingers crossed for your next stage of the treatment plan
I hope you don’t mind me jumping on this thread. I was diagnosed with Mucinous Breast Cancer in Nov 2019, had lumpectomy then 3 weeks of rads and Letrozole for 5 years. Just wanted to say I have just had my second yearly mammogram check following treatment and it was clear again 😀
I hope this gives you some positive vibes
good luck and keep smiling xx
Just reading your thread, I have been diagnosed with mucinous cancer and getting results today following 2nd op re-excision to get clear margins hopefully. Interested to know how has your treatment been going?
Thank you. I had a call from my consultant today to outline the results from my surgery as the pathology was done in time for their MDT meeting. My cancer has been re-graded from 1 to 2 (I had been told that re-grading was rare) and because of the size of the tumour (29mm) I am in a grey area for the next treatment step. I don't need further surgery (clear margins, no lymphovascular invasion and no spread to lymph nodes) but chemo is back on the table as an option (didn't see that coming as I was previously told I was low risk for chemo). They are going to send a sample of the tumour to the US for Oncotype DX recurrence scoring or something. I am still trying to process it all. I was so preoccupied with whether I need more surgery (and the good news is I don't) I am now in a tizz for the next 2 to 3 weeks as to whether I will need chemo and how long the treatment plan will be and what else will be in it. It sounds mad but I don't know how to juggle/ plan the rest of my life alongside all potential treatments and side effects. Really had enough of this cancer crap now.
Try to stay positive .
I know it is very difficult to do this at the moment .
Anything more I can support you with please let me know .
Fingers crossed for you xx
Thank you for your reply. I heard too that this type of bc has a favourable outcome but sometimes still hard to control the fears & worries. I was told I would be reviewed 3 weeks from op date but when I got my appointment letter it is 5 weeks from op date. My dad thinks I should query that but I don’t really think there is much point. In meantime will return to work on reduced hours to distract myself. My immediate concern is whether more surgery will be needed as that will be logistically harder to deal with once term starts! It sounds like you made speedy progress through your treatment plan. Thanks for the tip about tamoxifen! Xx
Your treatment plan sounds exactly the same as mine was.
My last radiotherapy was 8th July 21 and I currently take tamoxifen .
I was never given any explanation as to why I may have got mucinous carcinoma on my 40s but I just try to focus on the fact that my consultant told me if she was to get any of the breast cancers that would be the one she would choose.
I believe it is also one of most successfully treated.
I received my first annual all clear and was absolutely elated.
It was such a milestone as you have that constant niggle in your head .
The end of August will seem so far away and I'm sure the consultant will reassure you with clear margins.
My advice is to ensure you do the exercises as I had chording too .
Also use the breastcare nurses for reassurance ...thats what they are there for regardless of how trivial you think it is .
I felt like I was constantly on the phone .
I have gone through so many emotions too...including anger at this diagnosis I'm my 40's .
A word of advice if you are getting side effects from Tamoxifen ....ask for a change of brand .
It made all the difference to me.
If you need any more advice or any more questions please ask . I am here and am happy to support during this worrying time of your recovery.
I have just found your thread. I was diagnosed with mucinous breast cancer on 25 June and I am 45yrs. Complete shock as I have always been healthy. I had surgery 19 July to remove the lump and the SNB showed my nodes are clear. I was told prior to surgery it was a grade 1 lump, 3cm. Waiting for full pathology findings but my appointment is not until 25 August. Keep wondering if my margins are clear & whether more surgery needed. I was told the treatment plan would then involve radiotherapy & tamoxifen. How far along are you with treatment now? Has anyone told you what risk factors may be involved with this rare cancer and why it might happen in your 40s when it would normally affect someone 60+?
All best wishes to you xx
I had read that too (I'm 56). I forgot to say that I have just gone back to work also.
There are lots of lovely ladies on this site who will give advice and tips where they can. Tamoxifen has varying side effects but doesn't affect everyone in the same way, so please ask on here if you have questions there are lots of ladies taking it. Also if you have questions about your surgery or other treatments 😀
Please stay off Dr Google, just follow what your consultants tell you to do.
Take care x
Thank you Chelle56
It is lovely to have some reassuring words. I believe that this is one of the rarer forms of cancer but tends to affect older woman than myself.
I am 47 .
I have just started on tamoxifen and am just awaiting a date for surgery now .
I was diagnosed with mucinous carcinoma, 2cm last November, grade 1. I had lympectomy and SNB in January followed by 15 sessions of radiotherapy.
My lymph nodes came back clear and the margins came back clear. As I am post menopause I am on Letrozole for the next 5 years.
My consultant told me from the start that this was a slow growing cancer and it was treatable. The consultant radiologist I saw also said this.
Hope everything goes well for you
Keep smiling and stay safe x
I am very new to this and at 47 I recieved the news yesterday that I have mucinous carcinoma.
I have been out on tamoxifen as although I will need surgery, due to the CoVid 19 virus surgery is being delayed.
I am obvious apprehensive but would love to hear from anyone who has this rarer form of cancer