Sorry for no reply in a while. I tried to find my way here a few times but find it a clumsy website to navigate. So, I either got distracted or just could not find this section of posts. I will keep this page open to easier look for your reply.
Anyway, it is now Feb. March 20th. I got 1 drain tube out yesterday, as it was down to 20 ml a day & they do not like to pull more than 1 at a time. The one that remains is still draining at 40 ml/day. I have another appointment on Tues. & if I can drop to 30ml or below, they will remove that one too.
My pathology report revealed clear margins in all 3 DCIS locations, as well as no cancer in all 9 lymph nodes taken out to be checked. There was 3 other areas of invasive cancer found, after the mastectomy tissue was tested, so that was sent off for an Octo type DX 21 gene test (if I got that right) which is a rate of reoccurrence test. A low rate means no Chemo, whereas a high rate of reoccurrence means Chemo will be recommended. I am not sure what they will Chemo as I had a mastectomy??
I still have yet to meet with an Oncologist to start Gene Therapy. I have an appt. on April 23rd they are trying to move up sooner.
I am still sore, but have cut my pain meds drastically. Still need them occasionally, mostly at night... like now, as I woke at 5 a.m. & am very uncomfortable. A good portion of my sleeping pain is my right arm & left hip, which I am forced to lay on. I start shifting my hip to stop the pain, then the arm pain kicks in.
My arm is still quite numb with the nerves they cut or "moved out of the way" to do my lymph nodes. I have asked 3 separate times now to 3 different nurses & 1 doc about excercises, but they just dismiss it with a "Just move it slowly" or "stretch it out a little, a couple times a day." I don't want to do any damage to my stitches or remaining drain tube & it is rather painful to move passed shoulder height, so I just don't. Stretching to reach something brings out an "Ouch" & I feel an area or 2 either under my upper arm or on top that is either hot or cold (feels like water was dripped on it)... which I was told is just my nerves waking up.
How is your arm doing after having 31 lymph nodes removed? Also, did you get your MRI results back yet? I am crossing my fingers for a good & easy treatment outcome for you.🤞
~Wishing you well, Paula
Sorry for delayed reply. I'm sorry I forgot to message to wish you luck for your surgery..glad all went well. I'm surprised they didn't give you any exercises to do as I had to start the day after surgery. No heavy lifting for me either though... I can't believe it will be 6 weeks tomorrow since my surgery!
How did the follow up go with your surgeon? Glad the bra thing got sorted in the end!
I've been for a CT scan today so back to see my consultant on Monday when I'll find out if it has spread anywhere else....keeping everything crossed 🤞🤞🤞.
Love and hugs and hope the recovery keeps going well and you get those drains out on Friday!
Surgery went well. No infected lymph nodes, so no extra treatment needed that I know of yet. I'm a bit stiff on my right side, but am moving better. My hospital gave me no excercises to do, they told me no lifting more than 5 lbs or a gallon of milk.
Meds are good at keeping the pain to a minimum... & me groggy. But I have no place to be & with my men waiting on me, all is good. The bulb drains will be removed in about a week at a surgeon's follow up visit... if they are no longer draining.
I have been given instructions to not touch or remove anything. 1st follow-up is Monday with my surgeon, but I don't think they will do much of anything. Tomorrow a Homecare nurse comes out, but is not allowed to remove any bandages or even peek under them.
I found my breast care center does not know what the hospital recovery staff have on hand for post surgery. I was told "Oh, you will get a tank bra with pockets." Nope, they have none & instead brought a different type of tank bra then last time. One look at it I could tell it would not fit me. It is a medium & even with a smaller right side, there is no way I am a minimum around my chest. Still we tried it & it came no where near closin. Another kind was brought, like the one I had with my biopsy, it being a couple sizes bigger, fits a bit better because I am down several sizes on my right side now. My drain bulbs are pinned to my pants & seem well out of the way, so that is good.
Hope all is well with you!
Hi Paula Ann,
Thank you for your crossed fingers! 🙂
Yes I knew they were doing a full axillary clearance but apparently everyone has a different number of nodes...
Recovery wise I took it pretty easy. I bought some post surgery bras from Asda
but had one fitted in surgery that I kept on until the surgeon removed my dressings. I made sure I had some soft button up pyjamas in a size bigger than usual and some shirts/ blouses that were good to wear afterwards. At the hospital they provided me with a long strapped cotton bag which went over one shoulder and I could pop the drains in which was really handy. A local charity also provides small kits for women going in for breast surgery which include a small cushion to put under the seat belt on the way home.
Once home I made sure I did my exercises 3 times a day - have you been given a sheet of exercises yet?
I have slept on my back since the operation even though it's not my usual preferred position. My friend gave me a big v pillow which I used to prop myself up a little bit.
If I think of anything else I'll post again 🙂 Just make the most of your weekend! Then we're both at hospital on Tuesday as I have my PET/CT scan then too. Xxx
Crossing fingers all is ok!🤞🏻 Do you know when you will hear the latest results? Not sure if you said or not, but did you know ahead of time they were going to take a lot of lymph nodes (your 31)?
What have you found helpful recovery wise? (Like, positioning, pillows, shirts to hold drain bulbs, certain bras?)
~Paula (Keeping busy before Tuesday... surgery day.)
Hi Paula Ann,
Ouch!! That sounds so painful!!
Got to wait a bit longer for definite good luck as 23/31 of my lymph nodes taken out in my axillary clearance were affected so need to have a CT scan to see if it's spread anywhere....trying to keep positive as it still could be ok...
Such a bummer on the added stress to the surgery... they do say things come in 3's, then you have good luck (or something like that!)
I have been "enjoying" no period for over a year now, so that coming back would be a major bummer for me!! Any lower body injury while recovering from an upper body one would be miserable. Hoping you continue to recover from both fast.
I so get not wanting to take painkillers when you can get by without. But also very thankful when something like what happened to you occurs & they are available for use!
I had some leftover Tylenol 3's from the birth of my youngest. When he was about 2 yrs old & I slipped backwards on ice while holding him. Bam, right on my tailbone! His 40lbs was cradled in my lap as we fell, so he was fine, but the extra weight created such a shockwave I felt it all the way up my spine to my head. I had him climb up in our van on his own & got him buckled in. Went in the house to take one of the left over pills & headed out to pick up his older brother from school 3 minutes down the road. Thank goodness I stopped seeing "stars" a half hour later when he came out of school. Thought my recovery would be a month... it took 3 months for me to stop feeling the pressure when I sat down, walked or stooped. And I was a young something in my middle 30's then too! Passing the mid 50's mark last year... any added fall would not be easy!
Lol... no worries on your long post!😂
Good to hear you've got your date!
I'm doing ok thanks. Unfortunately I twisted my knee and sprained a ligament 3 days after surgery which meant I had 3 days when I couldn't move off the sofa! I couldn't weight bear as it was so painful ..I hadn't taken any painkillers post surgery but then needed them for my bloomin' knee! For about a week and a half I had to use a camping toilet and sleep downstairs! Add to that my 'time of the month' and you can imagine the fun I had!! Luckily my partner's work have been brilliant so I had his help!
Fortunately I had been going to get my drains out that day so borrowed my Nanna's foldable wheelchair to go and get them out the day after. Then a week later I had my dressings off and my surgeon is really happy with how things are healing. I do have some soreness in my right arm from node removal but managing fine with exercises...
I'm back walking normally now and have ventured out so onwards and upwards! Back on 24th Feb to get results so fingers crossed!
Sorry for the long message!
Love and hugs to all!
Thank you, Sarah. They will still take the sentinel node & 1 or 2 more, but they said other than being big, the were not worried cause they were the right shape.
I finally have a surgery date as of yesterday.... it is for Tues., March 3rd. I won't know the time til the day before.
Hope all is well with you! ~Paula
Hi Paula Ann,
Glad they seemed happy with your lymph nodes and hope you hear from your surgeon soon about surgery.
Keep us updated.
Love and hugs,
Delly, thanks for asking about my biopsy. At the Ultrasound they said my lymph nodes looked "prominent" (big), but not misshaped or anything else out of the normal. So they did no needle biopsy as planned. I am taking it as good news & expect a call from my surgeon's office early in the week to schedule surgery... probably after he looks at all the data.
Sarah, glad to hear you are getting along ok so far. Hope it continues! Keep us posted.
Tony had help from Mr Marks and Mr Spencer on this occasion so very tasty!
Had a much better sleep thank you .
Ahh so you're a trouble causer are you?!
Lots of love,
Sarjaba - Hope your Tony's cuisine skills matched up to, or preferably bettered the hospital meal? Ref "keeping you company", they wouldn't allow me in!! Anyone would think I had a reputation as being an awkward hussy and demanding in my standards
Wishing you a good deep healing sleep tonight, sweetie.
Sending lots of loveydovey stuff your way xxxx
I had compression stockings as well - they were taking no risks!
Yes looking forward to sleeping in my own bed - Tony's looking after me well.
Need to remember my precautionary antibiotic too...
Lots of love
Sara/Sarjaba - I'm pretty miffed about the hash and pud, but sooo glad you are now home.
What a pest with the compression boots and chugging motor noise. Wonder why they didn't just give you compression stockings?
Bet you're looking glad you're in your own bed to sleep in tonight.
**Don't forget your painkillers before you go to bed, whether you're in pain or not, so you don't wake yourself up if you move in your sleep.
Yeh, I hope you're having plenty of spoiling too. Cosset yourself, lovey.
Lots of love xxxx
It's only tongue in cheek whinging! I feel very lucky to have had all the fantastic care 🙂 💖💖🥰
Sorry about the poor night’s sleep - was probably inevitable - but happy for you that all has gone well and you can go home to your family 😊💕. I’m sure they will spoil you!
My surgeon's been and he's happy with everything and he's ok that I go home today 😀 Just seen the physio too so I've got some exercises to do. They both turned up at the same time as my toast though - priorities people! 🙄🤣Xxxx
Well what a sh** night's sleep that was! I normally sleep on my belly in the pitch black with no noise so not sure if it was the lying on my back, the light from the compression boots machine or the noise from said machine but it was a waste of my own room! 🤣 Might have even shared my hash and and sponge and custard if you'd said you'd keep me company - and I NEVER share pudding. 😋🤣
On the plus side I've just had tea and biscuits!!
Should be going home today but I'll know for sure when my consultant has been round.
Lots of love and hugs to you from this crazy chica!
Sarah/Sarjaba - Corr What?! Corn Beef Hash and Jam sponge and custard?! - Have they got any spare beds going?!
That's such BRILL news. Talk about a cool cookie!! Taa so much for letting us know. You any idea how long you'll be in, or does it depend?
Wishing you speedy healing xxxx
Kip - What's the Add Aspirin Trial all about then??
Paula Ann - Hope all goes well tomorrow. Are you then going to have to wait a further while for results of needle biopsy? How do I get an invite to the next chicken boob fillet meal? And perhaps you ought to start up a thread for recipes for?
Lotsa lurrrrv to everyone, DoolallyDelly (often very doolally!) xxxxx
Sorry for all errors I used the speech to text function!! Hopefully you'll get the gist!! 🤣🤣
Thank you Paula! Hope your lymph node needle biopsy went well today💖💖
I can't believe how calm I felt about everything! I honestly expected to have a meltdown this morning but I'm so bloody proud of myself!!
Packed my bag very last minute last night and and got up this morning had a shower and got dressed.
When I arrived my room was ready and I was taken there straight away my partner came with me me.and after I've settled in my surgeon arrived to talk me through the operation and draw on me! Then it was nurse anaesthetist junior doctor and then everything calmed down.
I was second on the list and everything went smoothly I don't even remember having any anaesthetic they put the cannula in and that was it!
I was a bit woozy when I came round but fortunately didn't have any nausea and tucked into my tea of corned beef hash and jam sponge and custard with gusto! I did go slower than usual just to make sure I wasn't sick 🙂
Just video called my little boy so he can see that I'm ok! if I have had a temporary tissue expander I actually have cleavage as they fit in with a bras well before I came out of surgery.
Hopefully recovery will go well and I'll soon be able to start my chemo.
big love and hugs to everybody whatever stage you're at as I don't have the messages to refer to. It's been a real help having you always talk to you and I hope we can keep supporting each other through whatever is to come.
LOL, Delly! Our chicken boobs were in the form of tenders from the local chicken joint tonight! They are the best in town and 3 -3 piece meals makes enough for 5 meals!
I was wondering if being sleepy from not a full nights sleep was the way to go for surgeries from the start. Glad others think so too.
Thanks for the well wishes for a good outcome Fri. I hope all goes better than expected for Sarah/Sarjaba also!
guess what I'm having for my dinner, girls?! Yep, chicken boobs
Sarah/Sarjaba - I'll be thinking of you tomorrow. Hope you're not too worried about it all and manage to get a good nights sleep, though probably not, only natural. I sometimes think it's better to already feel a bit dopey before an op, as you can just lay back and place yourself in their expert care anyway, and be well taken care of. Keep us posted, flower.
Paula Ann - My fingers are crossed for your biopsy results too, so the op can then go ahead. The delay must be a bit of a pain for you, when you'd probably revved yourself up for it, let alone now another wait and worry on results.
Lots of love to everyone xxxx
I am very new to this sight, but wanted to wish you luck tomorrow. Loved your chicken boob comment! Laughed cause a friend will say she is having chicken boobs (instead of chicken breasts) for dinner. And you have to love 7/8yr old boys! How awesome would a booby that shot Nerf darts be!!
My surgery (rt mastectomy with an implant) has been delayed due to the need for a lymph node needle biopsy on Jan. 30th. I won't know until results come back from that if the reconstruction will change due to adding chemo or other treatments. I am crossing my fingers they find nothing.
Wishing you the best of luck in your surgery tomorrow!🤞🏻
It's great to hear that all your treatment went well and that you ae getting yourself back to normal. It must be quite weird to come to the end of treatment after it dominating your life for so long....fantastic but weird...
Will let you know if there's a last minute adjustment and the Nerf bobby is born! 🤣💖🤗
Preassessment went ok so far - fingers crossed bloods and swabs come back ok.
Just going to try and enjoy these few days now with my boys and close friends.
Thanks for thinking of me.
Love and hugs 🤗💖
Hi Sarjaba, hope you are doing OK and all went well. In answer to your question, I am post treatment, I had the masectomy, chemo, ANC clearance and rads in 2018 so about 1 year since end of active treament. Am on Tamoxifen for 10 years and participating in a trial called Add Aspirin. So they through the worst and getting life back on track. Let us know how you are as soon as you feel able.
Ps.. A steel nerf shooting boob would be something!
Am just checking in with you. Hope all went well yesterday.
Please do let us know how you are when you're feeling up to it. Thinking bout cha, darlin.
Lots of lovey dovey stuff being sent your way. Big ((hug)) too.
lol, yes, you get used to being measured and marked up with marker pen! All the very best of good luck for Thursday x
Thank you for replying to my post.
I have heard conflicting experiences about the back muscle procedure so was interested to read your account.
I hope you're doing well still and still flaunting your boobs to anyone who'll look! I had to stop myself giggling when the surgeon was examining my boobs and had his tape measure out! Was all a bit surreal!
Love and hugs 🤗
Thanks for your message. I did think about just going flat but my son asked that I come back 'with a new bobby otherwise it'll be gross!' He's nearly 8 and is most put out that my surgeon doesn't offer an iron bobby that can shoot Nerf darts! 🤣
Where are you up to with treatment then?
Love and hugs 🤗
Ive plumped (no pun intended!) for the temporary tissue expander to allow me to decide on a permanent solution more leisurely after my treatment.
I go in on Thursday so had my preassessment today. All getting a bit real now...
Love and hugs x
Hi there, I had a a skin sparing mastectomy and immediate reconstruction with the back muscle some 10 years ago when I was 41. On the positive side, my reconstruction is amazing and it was great for my self esteem. My surgeon was a real artist and it really looks so realistic. I used to be really proud showing everyone! Certainly once I had recovered it allowed me to feel as normal as possible. However, I would say it isn’t an operation for the faint hearted. It was a really big deal and took a lot of getting over. Even after the initial recovery, in the early months my left arm was a lot weaker and I was conscious of tightness in my back, reminding me of the op. However, this gradually disappeared over time and my arm is pretty strong these days. I’m glad I had the operation because of the excellent results, but in truth if something now happened to my other side I don’t think I could face it a second time.
Hello Sarah and Delly, I remember having those decisions to make.. I chose to go flat, being very small chested anyway there's not too much difference really. I just didn't want lengthy surgery, my surgery was over all done in a morning and I was home mid afternoon on same day. I'm quite OK with my flat side but still have the option. On recon in the future. I was shown photos of what the different options would look like and that helped too. It's very personal choice so you go with what feels right for you, I did a poll of all my friends to see what they would do and we all chose very differently. As felt said until the minute you're gowned up you still dither.. But you'll get there, just don't rush it.. Good luck and with the chemo too. Had that as well and rads which was another factor why I chose to stay flat.. At least for now.
Ps. - Have you been shown photos of what the different procedures are likely to look like? !
Massively helps to see what a recon boob actually looks like, following it all, and the different procedures. Certainly helped me, but I was coming from a delayed perspective. I decided I didn't not want another scar on my boob or elsewhere on my body, coupled with less healing time, so plumped for my original one with an implant. xxxx
Yeh, can sooo relate to feeling a silly ditherer.
For my first op 2006, I still hadn't decided on my lumpectomy (with rads) or mastectomy (without rads), until standing in the ward bathroom, looking at myself topless early hours of the morning of actual op(!!), and pinching in what removing an extra 3cm sphere from my boob would leave. Not much. So mastectomy was the resounding answer. Didn't have your options, but just saying, so you feel your "dithering" feelings are sooo bloomin normal, girl.
And so Sarah. Breath in. . . and a long o u t . . . It'll come to you, perhaps suddenly and calmly at yoga?! Hope so.
Lots of lurrv again
Thanks so much for checking in!
I was a right silly ditherer at my appointment and ended up coming home without giving an answer. I am almost decided to have a temporary expander in whilst I go through treatment to preserve the skin but be able to start treatment ASAP and decide on permanent reconstruction later. The other option is the one you were offered, taking muscle from the back. The one thing putting me off is the extra healing that needs to be done. The surgeon gave me 30th January as a surgery date if I let them know in a couple of days but did stress that this can be put back...I don't see the point though as another week won't bring me more information...my noggin is only small so is near spontaneous combustion so I'm off to yoga to see if some complete mental stillness will bring the epiphany I seek! Will keep you posted!
I'm Sarah by the way.
Lotsa love to you too
How did you go on today? Anything any clearer for you and your "noggin"? Or may have it have complicated it all further, with the options now available??!
Soooo difficult, I feel for you, because you don't want to put off chemo any longer than necessary.
Even if you don't go for "immediate" recon, you've always the option of "later".
I wanted "immediate" recon - only implant though, but I had a change of surgeon and there was a misunderstanding with what I wanted, so ended up with delayed. Would have coped much better had it all been done at the same time, as life has a habit of throwing other unforeseen delaying and affecting factors and traumas etc. (the brown stuff) at you, so I ended up being 7 yrs later to just "embark" on recon! Still isn't finished now, due to other things getting in the way. You just never know. Just letting you know from experience, without wishing to add extra pressure (but probably am doing).
Please let us (me) know how you gone on today, and where you're up to with it all.
Lotsa lurrrv, Dellypoos xxxx
Thanks for replying. The whole thing really is clear as mud in my little noggin!
I'm sorry you seem to have had a complicated journey and but glad to see that you are supporting others in theirs.
I will aim to go to my appointment with all the questions I have for each type of reconstruction and narrow it down using those. I know they say to take your time with the decision but I don't know what waiting longer would tell me and I think having at least one thing sorted must help mentally when so much is out of my control.
Big hugs 🤗🤗
Crikey, - it's difficult enough for you to decide recon options, without chemo being bought into it all as well.
Without chemo considerations, I was offered Lat flap with my first mast, being smallish sized. But opted for implant - it being the easiest option, healing wise. I didn't want the extra comps of the healing, or speed of, for a large scar on my back. being a walker and wishing to avoid chaffing with rucksacks, as well as extra scar to the immediate boob area. But I ended up being a very "delayed" recon, in my case, so different to you.
The "flat" decision?? Have read many women who have gone that route. I ended up being without two for 7 yrs, and hated it. But it's very personal. I coped so much better with the loss of one, still not happily, but did NOT with the second. Fortunately not your case.
Afraid, I will always be pro recon than "not" or "none". Especially if it's "immediate", and that being dependent on whether it IS an option, given other treatments, rads wise, for instance, and it affecting the skin. But gladly, you've only mentioned chemo, not rads.
But then, you going flat! You would still have the option of later recon.
I don't envy you you're decision, sweetie, but I do wish you well with it all. That it's the right one for you, and you stay and keep well.
Lots of love from me xxxx
Thank you for replying BluebellTime 🙂
I have been given lots of options but, as you said, I am leaning towards the ones with least additional surgery and quickest recovery times as I want to get the chemo started ASAP.
Unfortunately I have more than enough spare in the tummy area but seems the most complicated option...
I wonder if I could just be flat and have a chicken fillet in my bra?!
Will check out those threads.
Sorry you find yourself in this position, yes its a big shock. I had mastectomy 5 years ago and was offered immediate recon which I wanted to go for as I would have found it more upsetting to be flat. Mine was a skin sparing mastectomy. The options are baffling, but sometimes decided by things out of our hands, so you will get advice about the most suitable options from your surgeon I'm sure. I did not have enough spare flesh for the tummy diep types (but could not have faced that amount of surgery anyway) so my choices were an implant or the shoulder flap, which would have still needed a small implant to balance up to the right size. I decided to go for the least amount of surgery and not to have scars or possible weakness anywhere else, so I have an implant type. It took a few months to get used to and does not move like a real breast, but feels and looks ok, especially since adding a nipple recon and then a tattoo done by my BCN. You will probably find more on recon on here if you look at the Going through Treatment, Surgery threads. Good luck whatever you decide xx
Hi! I'm 42 and have a loving partner and a beautiful 7 year old son
I was diagnosed with breast cancer after finding a lump following a bad fall. Initially it was thought to be fat necrosis but the radiographer 'had a feeling' and biopsied it. They found a 16mm cancerous lump so then followed MRI and ultrasound which revealed more cancerous cells and that it was present in a lymph node too...I've been very lucky that it has been found but the jump from fat necrosis to needing a mastectomy is a big one and the decision to have immediate reconstruction is the next to take.
Can any of you lovely ladies offer advice or give me personal experience of the decisions you made and the reasons for them please? I'm back to see my consultant on Tuesday 21st.
Thanks and hugs and positive vibes to anyone reading 💖💖