Mucinous Breast Cancer

[AnnieV]

Hi @katehep 

Sorry to hear about your diagnosis. I had surgery in July and have since started tamoxifen (3 months plus into it now) & my radiotherapy finished 7 weeks ago. I have found the situation more psychologically taxing than anything, having to live with so much uncertainty & having to do this in a pandemic.

I think I have found a small lump in my affected breast but after some dithering thinking it can’t possibly be anything untoward, decided to contact my BCN. I was due to have a hospital appointment tomorrow to get it checked out but someone I have been in contact with in the last 14 days has tested positive for Covid & now my appointment is rescheduled for two weeks time. I have had my booster & my lateral flow tests are negative so now I am thinking will I ever get to the hospital again as this could just keep happening!

I will post in the radiotherapy section to see if anyone else has had something similar happen with regards to lumps after rads.

I hope you make a good recovery from surgery & good luck with any future treatment. Knowing whether to go ahead with the treatment plan isn’t necessarily very straightforward.

best wishes xx

[katehep]

Hello, I just recently joined the forum and was diagnosed with mucinous breast cancer last month. I had a lumpectomy a few days ago. I’m 72, so am considering not doing hormone therapy. How are you doing?

[Fiona60]

Yes under 50 is young, I am just 60 so post menopausal which probably makes it easier.  Hopefully you will get on ok with the tamoxifen, as I think the hormone meds are really important in reducing the likelihood of any recurrence.  But very good news you have no node involvement, that’s probably the most important thing.

[AnnieV]

Thank you for sharing your experience. It's reassuring to find out the risk of recurrence is very low. Keep thinking how it all came about in the first place! Like you was otherwise healthy and as I am under 50, breast cancer wasn't exactly on my radar. I have read that mucinous breast cancer (if it happens at all) is more likely if 60 years or over, but the occurrence of this cancer is only between 1% to 7% of all breast cancers to start with. I was trying to find out more about the risk factors but it seems the usual ones of age, diet, exercise, alcohol etc are cited. The only one I could alter was to stop drinking alcohol (at 2 glasses of wine per week I was not exactly overdoing it).

My surgery revealed during the SNB that I was lucky not to have a spread to the nodes. I will need to wait a couple more weeks for my appointment to find out if the margins are clear. Otherwise, like you, the treatment plan is radiotherapy and for me tamoxifen (ER+ PR+ and Her 2 negative). I am pleased to hear your optimism and hope that I will reach that point to. It's all been quite a lot to take in since the diagnosis a month ago! Best wishes xx

[Fiona60]

Hi I was diagnosed with mucinous cancer in April, found a lump by chance on Easter Day but was otherwise fine and healthy so a complete shock. It is unnerving being told you have a rare cancer and I then had to have 2 operations as the first did not get clear margins.  I was also thrown to learn that I had micrometastases in the sentinel lymph node and that they had removed 8 nodes instead of the 1 or 2 I had expected.  However none of this has changed my treatment plan, the good news about mucinous cancer is they say it is very unlike to recur, so I don’t need chemotherapy.  The second operation a few weeks ago achieved clear margins so I have now started letrozole (as it’s 8 for oestrogen receptive) and waiting to start radiotherapy.  Am feeling pretty optimistic now as it sounds like I should be able resume normal life quite soon without too much problem.  Will have regular mammograms but they say risk of recurrence is very low 👍.  Good luck with it all. 

[Lemonsqueezy]

@AnnieV I totally agree. I've been pottering around too but getting frustrated as I keep seeing jobs in the garden which are too big at the moment. I love nothing more than finding a big spade and digging up stuff usually! 😆

Glad you are sleeping better x

[AnnieV]

Yes I have been sleeping a little better since surgery (once I have found a comfortable position). As the days go by I still tire quite easily. There is not much you can do at this stage other than the exercises they give you, the odd short walk, the odd bit of laundry, but nothing too strenuous. I tried playing piano again in the last two days; the first day left hand only (the unaffected side) but yesterday some hands together. I didn't want to overdo it though and sort of felt guilty about trying. It's not until you are in this position you realise how much of normal life one takes for granted. xx

[Lemonsqueezy]

It's certainly no picnic in the park is it! 

Have you managed to get any more sleep lately? Hugs AnnieV x

[AnnieV]

I am sorry to hear you are going through something similar right now. The cancer diagnosis was shocking enough even though I was preparing for it in the two weeks between the biopsy & results. Suddenly you feel very alone. And yes, the nasty surprises along the way are bothering me. I know the cancer journey can be twists & turns along the way. (My mum passed away after a long fight from leukaemia in January 2020). The ultrasound suggests my nodes are clear but I don’t know how reliable that is & I am worried that when I wake up from surgery they will have done a full axilla  clearance. Then I will likely worry about lymphoedema. I am so tired already; haven’t slept properly since I found the lump in May. Going from fit & healthy to finding out you are harbouring something malign takes some adjusting to. Sorry for the ramble x

[Lemonsqueezy]

Hi Annie,

I was diagnosed on 23rd June with mixed mucinous and ductal carcinoma with intermediate grade DCIS. So it looks like I have a mixture of cancers. I'm at a similar stage to you, I've just turned 50, my surgery is booked for 15th July and as long as no surprises are found are due to have radiotherapy and tamoxifen too. Do you have the number for your Breast Care Nurse? They may be able to explain a little more what your particular diagnosis means. I think I'm going to call mine this week for an explanation of mine. Take care R x

[AnnieV]

Yes, suddenly life is turned upside down again like a bolt out the blue. We cancelled our trip to Yorkshire at the start of school summer holidays & among other worries is the fact my two boys will be stuck on computer games all summer long. Good luck for your pre op. Mine is on Monday.

[louby_lou69]

I’m going in for my pre op assessment on the 19th which is also supposedly the start of my school summer holidays(I’m a teacher) 

We’ve amended our holiday to Greece AGAIN, booked in 2019 🤦🏼‍♀️

Good luck x

[AnnieV]

Thank you. A virtual hug is definitely appreciated. Everyone is set to return to ‘normal’ on so-called freedom day & I will be having surgery 🥺

[louby_lou69]

Hi

No experience of this I'm sorry but just wanted to give you a virtual hug.

If you don't get a reply on here you could try the Macmmillan forums, there may be someone over there that can help you

Take care

Lou x

[AnnieV]

I have been recently diagnosed with Mucinous Breast Cancer, which I have been told is uncommon. Does anyone have experience with this type of breast cancer, how the treatment went and what the risk factors are? I am 45, a healthy weight, drank on average 2 glasses of wine a week (but now stopped), breastfed 2 children and never used pill. The diagnosis has come as a complete shock. I am due to have breast conserving surgery and a sentinel node biopsy in July and then further along, radiotherapy and tamoxifen. Thank you.