Anyone else diagnosed with invasive micropappillary carcinoma ? I have had the cancer removed surgically . It was ER +,PR+ , Her 2 negative. Postive sentinel lymph node . Plan is for radiotherapy and hormone treatment but now they are thinking about Chemo as an adjuvant therapy which has totally thrown me . I am waiting for results of Ki67 and have first appointment with oncologist in 2 weeks . Anyone else in with similar experience? Would love to hear from you. Thank you *emphasised text
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Hi Bella
Have just seen your post. I was diagnosed with Invasive Ductal Carcinoma with micropapillary features in December 2023. Multifocal and 2/3 positive sentinel nodes. Had a mastectomy in February and started chemotherapy in March. - one more cycle to do then 3 weeks of radiotherapy.
It’s quite a rare diagnosis and I haven’t seen many others with this. My oncologist has over 40 years experience and is confident that treatment paths and prognosis is not so different to other types, they are talking about curative intent so I’m staying positive.
Happy to chat and share experiences if you want.
J
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Hi There
Thanks for replying to my message . The KI 67 test I had came back low so I didn’t need chemo in the end but I am going to be having 3 weeks of radiotherapy and have started tamoxifen, an ovarian suppressant and also due to start biphosphonates . How did you manage the chemo ? Not long to go now … Can I ask were you HER 2 positive or what led to the decision for chemo ? You are the only person that’s responded to my message re micro papillary . The oncologist also said my prognosis is good . I had 2 areas a Ductal carcinoma and micropapillary and cells present in the sentinel node . They only managed to get one sentinel node biopsy but the radiotherapy will also be treating that area … I’m trying not to Google and just trust what the oncologist says . I think although it’s rare it’s just been treated as an oestrogen positive breast cancer … would love to hear hiw you are getting on …
Hi Bella
Like you, Ive only seen a few posts with this diagnosis. I am Er+ve 8 and PR+ve HER2-ve.
I was offered chemotherapy as the pathology report showed lymphovascular invasion. Was told this would potentially mop up any cells that may have escaped. It’s not been easy but I felt that it was best insurance policy. I’m not having axillary clearance surgery as trials I was shown give same outcome with radiotherapy. (AMAROS) My pathology was like yours IDC (NST) and micropapillary. It was grade 2 but some high grade ‘in situ’.
Anyway all gone with mastectomy! They just seem to treat it as normal ductal carcinoma and the, everyone is positive and I have to trust they know what they’re doing! My BCN stated when I had a wobbly day “we can’t give false hope, if we didn’t believe there was strong probability of curative intent then our conversation would be very different’. This did give me confidence.
My only concern is that mine wasn’t picked up on mammogram 9 months before I found lump, and lymph nodes looked normal on ultrasound (2/3 positive) so follow ups going to have to be aware of this.
Hi there
Sounds like you’re in good hands and the prognosis is a good one ! That’s what I was told and I guess there’s no guarantees for anyone … even people who haven’t had breast cancer . I’ve been struggling with those worries of reoccurrence at the moment but hoping with time it will settle … Are you on hormone therapy ? I’ve just started taking tamoxifen and the injections . Have some brain fog but seems to be ok so far … my first radiotherapy pre assessment appointment is on the 18 th June … I didn’t have any symptoms at all . The cancer was picked up in my first routine mammogram . They said it had been there a while . Like you my lymph nodes looked clear and healthy on the Ultrasound. Hopefully the radiotherapy will blast any of the rogue cells … good luck in your ongoing recovery …Let us know how you get on … 
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I’m obviously a bit older than you! (65) I’ll start on Letrozole I think after chemo finishes and before radiotherapy.
That’s really weird as on Saturday I got my letter through for pre radiotherapy planning - mines on 18th June too!
I’m used to brain fog with chemo, I’d been on HRT for years, don’t regret that (even though it’s a possible risk factor) but had been reducing dose for a few years (stopped on biopsy day!) and so am definitely post menopausal - I’m hoping the hormone blockers won’t be so much of a shock to my system- but we’ll see. I’ve got a few friends who are BC survivors and have said if side effects are a problem them you can ask for different brands or types until something suits. All seem to be tolerating well currently so fingers crossed.
How did you get on at your radiotherapy planning today. Mine seemed fairly straightforward. Start treatment in 11th July. 5 days a week for 3 weeks.
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Hi there
Yes it seemed ok .Are you far from the hospital ? I guess after the first treatment you know what then to expect … I start on the 2nd July for 3 weeks also with radiotherapy to breast and underarm . Have you started the Letrozole yet ? Hope you are doing ok .
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We’re about 15 miles from hospital - hubby will drive me. Haven’t started Lentrozole yet as still one final chemo (tomorrow!) Radiotherapy scheduled three weeks after last one as that tends to be when I’m getting back to normal. They gave me some cream to use to prepare skin and to use after sessions. I’m having breast, under arm and sub clavicle nodes too. Didn’t need tattoo dots as position lined up with lasers - dead impressed! You’ll have to let me know how you get on x
I’m with NHS highland and they had really useful videos on YouTube showing what to expect which was really helpful. The ladies also showed me the machine and explained how it would work so really felt at ease
Hi there
You’re doing so well just to be finishing chemo then straight in radiotherapy… I did get some tattoos but didn’t bother me . Maybe would have chosen something else other than a dot 
. I watched some of the utube videos but felt a bit freaked out with the mould things but I believe that’s for head a neck cancers … The breast care now did a good Q and A session on radiotherapy will need to look back see if I can find it . What creams did they recommend for you ? I’m in nhs Grampian . My folks stay up in highland ! Will let you know how it all goes . Take care
I’d expected tattoo - had even found Highland Laser clinic https://www.lasers.scot would remove tattoo dots for cancer patients free of charge.
This is the Raigmore video I was shown and it was exactly the same when I visited. I do understand the mask thing - think that would be very claustrophobic!
The cream I was given was Zerobase. I was told I get phone calls every week to follow up. If I need more cream or something stronger if get reaction they’ll supply it. Top tip I read was cotton vest inside out ( to keep seams off skin) under bra or leave bra off, drink loads of water and when moisturising don’t forget arm - boob area gets done but if you forget underarm it can get sore. Did you get info on the little lifts charity from your BCN. They sent me loads of free stuff including a cream called Moo goo udder cream (?) which is really rated by loads on here. It’s a little bit of a palaver applying but worth it for the amazing goodies they send for free ( about 30 items from lip balms, stress relief pillow spray, microwave heat pad, massage oil, chocolate etc…about £80 by my calculation. Some of the info they ask for seems quite intrusive but I checked the privacy policies and it’s purely to justify entitlement and no shared with anyone.
We stay in Nairn which is borderline Grampian so we’re almost neighbours 
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Good luck today with your first Radiotherapy Bella. Let me know how you get on xx
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Thank you ! 
Hi there
I just saw your last email . I bet your glad the chemo is all now past… thank you for the links and useful tips. I will check out the charity with the freebies as nice to have a little pamper.
First radiotherapy session today seemed fine . The machine I got was new they said and looked exactly like the ct scanner . The radiographers were very nice . It seems to take longer to position you exactly as they need to than having the treatment itself . They recommended Aveno cream so started using that . I had been using coconut oil for my scars but they advised against that until treatment finished … I also read keeping the cream in the fridge can help soothe the skin . I believe the side effects are cumulative but hoping it won’t be too bad … I have my nieces wedding on sat in Inverness so hoping I’m able to enjoy it… 1 down 14 to go ! Let me know how you get on … best wishes
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Good to hear so far so good! Enjoy your nieces wedding- we may be helping some friends take their boat from Nairn to the Caledonian canal in Inverness on Saturday. So if you see a couple of sailing boats on the Moray Firth as you pass give us a wave.
I’m just on the mend from last chemo. Was so excited to walk out of the Macmillan suite I forgot I still got poison in my system for a few weeks! (It always reminds you though! )
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The boat trip sounds exciting! I will look out for you if I’m near the water although the wedding is at Bogbain farm . Have a lovely weekend.
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Hope you enjoyed the wedding. How are you getting on with the radiotherapy-mine starts tomorrow and just wondering what side effects I can expect? I’ve been moisturising like a mad woman and trying to stay as hydrated as possible. Still a bit out of sorts with chemo hangover but hopefully I’m strong enough to get through this next step. x
Hi there
I’m sure you will manage this last step as sounds like you’ve been through the worst parts as far as treatment goes . I wouldn’t worry to much about the radiotherapy. It’s a bit daunting to begin with but so far I’ve found it’s been ok . The staff here are really nice and I am in and out in no time at all . Once they position you and then leave the room they take some photos then the machine starts . My treatment takes less than a minute although it might be different for yourself . My skin was a bit sensitive yesterday but I haven’t noticed too much . I’ve just been using the cream twice a day and doing the basic physio exercises . The driving to the hospital and getting parked is probably more stressful… I hope you get on well … The wedding was great but feeling tired with having a busy weekend . Let me know how it goes … best wishes
Hi Bella
Thanks for the update.
Have just realised from another thread that you have had reconstruction and reduction too!
This was my main worry with radiotherapy as I love my new boobs and was worried about contracture and skin problems! If you’re having minimal effects then that’s really reassuring. My BCN said that technique has improved so much so shouldn’t be a problem but you can’t help but worry!
I’ll let you know how I get on.
Take care and rest. x
First one down! Astonished at how quick and efficient it was. Hope you’re still faring well x
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