Surgery December 2018

[Beckett]

Hi Reddi

It's not cording, I've had physio for that and all is good with it now. I've phoned my bn and waiting for her to call back.

B xx

[reddi]

@Beckett Usually cording occurs along the arm, from what I understand, but that is something to be on the watch for, too. Your BCN or GP might be able to refer you to a physiotherapist, who would be able to assess you and suggest targeted exercises, if they might help. I know some of my June chemo folks found physio super useful for cording and other stuff that didn't seem to be resolving. 

[Beckett]

Thanks ladies. Will start to do more exercises. Not sure about swimming as I've not had reconstruction yet. 

B xx

[Trixielady]

Hi Beckett,

I had my mastectomy in October and still experiencing pains if I stop exercising, started to experience some horrfic pains and discomfort when chemo started, I'd also rang the emergency nurse and BC nurse then realised that I felt much better when I'd been able to go swimming before chemo and had been my exercises. I think my arm was also starting to cord xx

[reddi]

@Beckett I found that I was getting shoulder aches, and I think it was from hunching forward a bit after surgery, without even realizing it. Hopefully, it's something like that for you, too. I found doing the post-surgery exercises more regularly and (gently) pushing myself to stretch more each day, as well as watching my posture, has helped quite a bit. 

[Beckett]

Yay to no drains! That must be such a relief! I had my mastectomy New Years Eve and all good but I've started with a real ache in my right shoulder blade (right side mastectomy). 

Has anyone else had this? I'll admit I'm worried that it's the start of something nasty. 

B xx

[Feenix]

Just wanted to pop on and say .... what a record MrsG1962 ...it must be bliss without it. Enjoy your 13days without appointments.

Reddi ...  👍 ☘️ and everything crossed for your radiotherapy .... hope it’s not as bad as you seem to expect because of your penchant for burning. I’ve not had rads just know that most places say to moisturise moisturise moisturise ... and keep hydrated.

J xx

[reddi]

@MrsG1962 Hurrah! I was thinking of you last night and came on the site specifically to see if you'd had your drains out. You must be beyond thrilled. And a record-setter, gah.

Sorry to be so slow in seeing your happy news -- I either didn't get a notification or missed it.

I'm on my way to day 3 of radiotherapy for my left breast. Only twinges of pain thus far, but given how easily I burn in the sun, I am expecting some burning. Just one more step on the journey...

[MrsG1962]

After 61 days my drain is finally out !

Mags v sorry to do this as a reply but I really can’t get to grips with the new format and wanted to post in our December surgery group. Saw my consultant today and she finally removed my drain. It was still drawing too much fluid really but she was getting concerned I could get an infection, the exit site was quite angry and to be honest I was fed up with it being there. If I get a build up of fluid she’s going to aspirate it using ultrasound but hopefully won’t come to that.

The previous record at the hospital was 6 weeks but I’ve smashed that with my 8 weeks 5 days although it’s a record I’d rather not have ! 

Appointment tomorrow to get a prosthetic nipple for my reconcstruction /implant and then I have a 13 day break with no appointments - bliss.

Hope all you December ladies are doing ok xx Melanie 

[Beckett]

Ah, of course! I just have an empty cavity! Ha. Thanks for your well wishes ❤. That is such a long time with drains! Really hope you can take it out soon! Xx

[MrsG1962]

Hi Beckett, I think it’s my implant that concerns them if they have to aspirate as they can’t puncture it.

Thats good you don’t have to see him for 6 months and fabulous news about your hair.

My drain is still in, now been 6 weeks and 2 days and it was still 50ml this morning. It’s showering I miss most, my allergy to waterproof dressings rules that out. I’m sure when I finally get in that shower i’ll Be in there all day 😂😂😂. Great to hear from you, hope the radiotherapy passes uneventfully, take care, stay strong and keep that chin firmly up . You really are getting somewhere now and I for one am chuffed to bits for you xx Melanie 

[Beckett]

Mrs G
I've had mine drained twice since my drains were removed 6 days after surgery and it was very quick and easy. A fine needle aspiration but no ultrasound needed. It was just done during my check up.
This Friday's check up I was told he wouldn't have to see me for 6 months.
Being referred back to the oncologist for radiotherapy now. Arm still stiff though so meeting the physio on Tuesday.
My hair is growing back quite quickly too!
Feel like I'm getting somewhere now
B xx

[MrsG1962]

Reddi that’s not a bad idea. I’m sure I’ve now forgotten how to sleep on my side, shower and  dress in anything other than leggings 😂😂😂. 

I “suggested” today it should just come out but apparently that would involved having fluid drawn off by a needle guided by ultrasound everyday so I guess it there better option to keep it in.

As you might imagine the exit site is sore and angry so they came up with a new way of coiling it today and taping it down only it was taped so low I couldn’t even get my knickers up 😊 needless to say I’ve “adjusted” the tapes ! 

Im just resigned to it always being with me now and I am an expert at shifting stuff through it, clearing blockages, air bubbles etc. It’s like having a new hobby 😁 xx Melanie 

[reddi]

@MrsG1962 Your lingering drain is still in! Unbelievable. Maybe you should try naming it -- with the idea that getting 'attached' to it (emotionally/figuratively, in addition to physically/literally) will jinx it in some way, and suddenly the output will fall and you'll be rid of it. 🤞 for you. xoxo

[reddi]

@Magsv Great news! 🍾[edited to add 🎉🎉🎉🎉 as that 'popping cork' emoji is hard to make out when this small]

I'll be starting AI tabs in 4 weeks, once I'm officially in medically-induced menopause (I had my first Zoladex injection today, which should do the trick). It sounds like you've found them manageable -- nice to hear.

[MrsG1962]

Mags v that’s fabulous news. We definitely mirror each other I saw my consultant today too. Scar nearly healed now so haven’t got to see her for 2 weeks but still have that drain in ! Still drawing 80ml per day and been in now for 40 days - has to be some kind of record.

Your Mastectomy was definitely the right way to go and the annual check ups will keep a close eye.

take care, stay strong and keep your chin up xx Melanie 

[Magsv]

Got results today. All good. There was another 2mm high grade DCIS still in there. Small - but glad it's gone so mastectomy was small price to pay.
Back to annual check-ups for next 5 years. Starting July as still keeping a lookout for cancer recurrence in remaining affected invasive cancer breast.
Also still advised to keep going with letrozole tabs. Been taking them for 3 years now so may need to continue for another 5.
Small price to pay 👍🥂😍

[reddi]

@Pulapula That sounds like a very good plan. Are you on the Rosco trial? That is, will your next set of chemo be with a taxane, or will you be receiving more FEC? Either way, fingers crossed for no cancer in the nipple sample and few side effects! xo r.

[Pulapula]

Congratulations Beckett that’s great news!

I got my results on Wednesday. A bit complicated. They found some previously undetected pre-cancerous cells (DCIS) in the margins so I was back in yesterday for a cavity shave and to remove tissue from behind my nipple to test - nipple will need removing later if necessary as I wasn’t ready to lose it now. The tumour they removed was about 10cm (reduced from 30cm after FEC chemo) so I have to start chemo again next week or the week after and then rads. The other option was chemo now and mx after but as my recon is pretty good it seems a shame. My surgeon didn’t want to sway my decision but afterwards said it was what he would have recommended so that was reassuring. So although I’m probably cancer free (no node involvement, tumour out) they are being safe by removing the dcis and doing more chemo.

[reddi]

@Beckett Congratulations! What lovely news.

[Beckett]

Hi Ladies,
I had my check up yesterday and the surgeon said I was cancer free! Lots of tears and family gathering, yesterday.
Still need radiotherapy but it makes it all worthwhile! I can deal with only 1 boob for a while...small price to pay.
Hope you are all ok.
Becky xx

[Linda Corinne]

No I am not on Bisphosphonates. I did ask the doc about them but think he said it is for when you have Osteoporosis or something like that. I am just on calcium but have only just started on Letrozole. They have just started using them here.
Will look at the link now.x

[Magsv]

Thanks for the messages, Melanie, Reddi and Linda. The chest infection is loads better .... and the sachets have certainly worked (and still are working :-) !). Still haven't taken the softies out the packet, but then again, I've been housebound since op so have been mostly in pjs. Hoping to venture out soon. x

Linda, my Osteopenia has probably been caused by 3 years of taking Letrozole. Did you mention earlier that you were on Bisphosphonates? I think I'll mention this to my GP or maybe wait until I have an Oncologist appt and mention it then.

I read this link about how they can prevent spread of primary breast cancer:

https://www.breastcancercare.org.uk/information-support/facing-breast-cancer/going-through-breast-ca...

I've been prescribed Vit D, but maybe better adding these as well?

Margaret x

[Linda Corinne]

Glad your feeling ok Magsv now. The painkillers give you constipation. I already had it a couple of days before my op. 4 days of rads left. Have got Osteopenia like you. Wonder if its due to the chemo? x

[reddi]

@Magsv Argh, what a bad mix of stuff to have to deal with on top of recovering from surgery. During chemo (I had chemo pre-surgery), I got hemorrhoids for the first time in my life, presumably because chemo dries everything up and, to help mitigate side effects, the oncologists give you steroids, which cause constipation. It has taken me weeks to start to feel healed up down under. It sounds as though the sachets are helping you, but if the problem comes back, my GP gave me a prescription for lactulose, which helped things go... let's say, smoother.

News Report: I've got my pathology results, and I'm delighted to say that I do not need to undergo re-excision. My surgeon decided she didn't quite like the margin on my WLE (left) side at the time of the operation, so took a bit more then and there, and so she got a nice 3mm margin circumference around the IDC lesion. On the nipple/skin-sparing mastectomy / immediate reconstruction (righ) side, the removed tissue had at least 2mm on all sides but the anterior (skin) side, but there was still a clear margin there, i.e., no cancer cells on "ink". And because the IDC and the DCIS both showed a very strong response to my pre-surgery chemo and HER2 antibodies (and I still have 12 Herceptin injections to go) and they're both ER+/PR+ (and I haven't yet started endocrine therapy), she feels -- and I agree based on the research I've read -- that there's no need to remove the reconstruction just to hit 2mm. (Getting 2mm on the anterior side would almost certainly leave too thin of an envelope to keep it, so it would entail a majory surgery now and a major surgery in 16-18 months, for no definitive improvement in recurrence risk, etc.) In addition, the sample she took from the nipple on the mastectomy side was cancer free, so the nipple can stay.

Of course, I'll have to remain viligant doing breast self-exams between clinical check-ups, but it's good news. And it makes me feel the neoadjuvant chemotherapy was totally worth it, despite the infections, hospital stays, shingles, alopecia, and everything else.

So, next stop: radiotherapy (left side only)!

Fingers crossed that everyone still awaiting path reports has good news, too.🤞And if a re-excision is necessary for you, we're here to support you!  

p.s. If anyone is recommended to have chemo post-surgery, please do feel free to ask me questions (I had FEC-T plus HER2 antibodies). And there are few words capable of conveying just how helpful my monthly chemotherapy group was, beyond: the first thing you should do, once you decide to sign the consent and get a date for starting, is join your month's thread.

[MrsG1962]

Mags v sorry to hear you’ve been unwell, especially both ends 😁 but really pleased to hear you’re not having any issues with the operation site. My scars are so neat I honestly think they will fade out beautifully. The softie is really weird isn’t it, I can’t work it out at all so haven’t bothered, a baggy shirt is hiding a multitude of sins.
Hope the chest infection is well behind you now and the sachets have done their job - it’s the little things 😂😂😂. Take care and stay strong xx Melanie

[Magsv]

Just catching up with everyone's news ...after the most horrible week ever. It started off with a really sore throat and I put it down to the tube they use during op. It didn't go away tho and turned into a nasty chest infection.
After a few days I realised I hadn't been to the toilet and became horribly constipated. Maybe I strained too much and tore something - but the pain was excruciating and I spent sleepless nights walking the floor! I phoned doc on friday and got some sachet things to take- took 3 days to work.
Sorry about all the detail but tonight is the first time I've felt semi normal. I'm very pleased 👍😁
I've had no problems at all with mastectomy. The community nurse came today to change dressing and all looking good. I had a funny sloshing noise from it one day but have been wearing a tight fitting sports type bra day and night and it seems to have helped 🤞
I had a look at the mastectomy scar when the dressing was changed (through the steri strips) and it looks surprisingly ok. I go back to the hospital on 16th Jan for results, and on 7th Feb I have an appt for boob fitting (they gave me a couple of softie things meanwhile but haven't even taken them out of the bag yet).
Mags x

[reddi]

@MrsG1962 Good luck to you, too!

[MrsG1962]

Reddi, seeing my surgeon tomorrow too. It will be the first time in 4 weeks she’s seen it as she’s been back to Sudan to visit her family. The bcn’s have seen it a lot but like you I’ll be interested to hear what she has to say and get my full histology report. I know the drain is doing a good job, and drawing off fluid when you have a silicon implant is very difficult but goodness I’m fed up with it now. Hey ho could be a lot worse xx Good luck for tomorrow Melanie 

[reddi]

@MrsG1962 Oh, no!

If it's any consolation, I was only putting off 10-20ml the last 3 days I had my drain, but since it's come out, I've swollen up a lot. No redness or heat, though, so they'd prefer to let me body absorb the fluid. Seeing my surgeon for path results tomorrow -- she's been on annual leave, so it will be her first look, and I'm curious if she'll think the swelling is just peachy.

[MrsG1962]

Hi Reddi, still got drain number 2 and today it’s gone up from 50ml yesterday to 100ml today so bcn thinks it’s going to be at least another week.

hope all you December ladies are doing ok xx Melanie 

[reddi]

@Beckett I trust you've been able to get some help with the pain by now -- how are you doing? Are your drains out?

@MrsG1962 Is drain buddy no. 2 still with you? Hopefully, it can't be too much longer, if it is.

How is everyone else doing? Thinking of you all.

[Trixielady]

Hi Beck's , sorry to hear about your pain , I was advised to ring the ward , my arm and armpit are still really uncomfortable three weeks after my lymph nodes clearance operation my drain ended up being left in for two weeks , they say keep exercising it difficult when it hurts & is heavy Xx I was given oxycodone wish I took to help get some comfort so I could sleep xx

[Beckett]

Hi
No, to be honest I'm not impressed with the aftercare thus far. It was much better during chemo.
My bns don't work over weekend. District nurses just say contact dr.
I'm seeing dn face to face tomorrow so will talk to them.
Xx

[reddi]

@Beckett I don't know, but my nurses told me to contact them if I experienced significant pain. Did they provide a contact in the surgical ward for after-hours? (I got one.)

[Beckett]

Hi Ladies,
My drains are supposed to be out tomorrow but I'm concerned about the swelling in my arm.
District nurse not much use!
Should I have pain under my arm? Not my arm pit, under arm. Really painful! Is it part of the lymphedema?
I can't speak to bn until Monday.
Becks x

[Beckett]

Brilliant! 1 is better than 2!

[reddi]

@MrsG1962 🎊🎊 Hurrah! 🎊🎊

[essexgirly2]

Oh, good news Mrs G! what a relief! You can see the light at the end of the tunnel now? Onwards and upwards, glad you are feeling a bit better

[MrsG1962]

At last one drain has gone ! 25 days it’s been with me but can’t say I was sorry to see it go. Sadly the 2nd one is still drawing 60ml per day and has to be below 20ml for 2 days before they’ll remove that one but feel much better with one down. It’s the little things........ 😂😂😂

[Trixielady]

Morning Beckett , we're all different , I looked on my first return appointment once the nurse removed my dressings wasn't bad but I only looked down at it ! next time I asked and she stood me Infront of a mirror it looked very different but I was very brave and on both occasions showed my hubby & Mam & sister so they could keep an eye on it ( sister was a nurse) it was alittle bruised looked 100x different but my head coped my my surgeon was very neat once scare healed I started using bio oil , I put my drains in my dressings grown pockets also had a special bag and slept on my hubby's side of our bed with a V pillow , I was also asked to mark the drains each day for two weeks but on each visit nurse change the vessel , I body wased in the bath but never removed my bra bodice but getting out was difficult and my knees ended up hurting haha took my mind of my boobie for awhile , I've read T & Chemo by Jackie Buxton ,I found it fantastic & uplifting , I used my strong Meds at bed time & during the night , I didn't and still don't sleep well more due to discomfort than pain although my arm feels strange in parts , sending love & hugs , I'm waiting for my postman ( chemo letter ) xx

[reddi]

@Beckett I am so glad you are home and healing. You'll know when you are ready to look.

I got several breakfasts in bed -- I think you have kids, so this may be slightly less practical for you, but it's a nice little post-op luxury...

[Beckett]

Hi all,
Home yesterday. All done. 2 drains in. Feeling ok. Not as bad as I thought pain wise but cannot look at it yet.
Family all looking after me. The only way is up from here!
Here's to a better year for us all xx

[essexgirly2]

So pleased its gone so well for you!  Have a good nights sleep and Happy New Year!! x

[MrsG1962]

Great news Mags v hope you have a fabulous night sleep xx Melanie

[Linda Corinne]

Glad it went well Magsv.x

[reddi]

@Magsv Hurrah! Just what you wanted. Happy New Year! 🎉🎉🎉

[Magsv]

Thanks for all the good luck messages.

Home! No drains and felt great when woke up - what a change from last 2 times! Anaesthetist reckoned it was pain killers during op causing sickness so used a local 'block' thing or something. It worked 👍😊. Hospital phoned district nurse to drop in tomorrow to remove padding and just leave waterproof dressing underneath, and for another visit on Thursday. NHS is marvellous 😍.

Hope you got on Ok too Beckett. xx

Happy New year all - so grateful for all the advice and support ❤🥂xx

[MrsG1962]

Good luck Crochet addict I have everything crossed for you. Stay strong and keep your chin up xx Melanie 

[reddi]

@MrsG1962 Argh -- it seems the drains will be with you til the new year then. Sending lots of 💕 and my best voodoo spell to get your daily output down and your tubes out anon.