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Mastectomy -advice please?

greyh1234
Posted by

Hello everyone, nuby to this forum and cancer.

Grateful for any advice, thoughts, experiences x  I'm 61, been diagnosed with grade 2 lobular breast cancer -got my mastectomy on 6th Jan. I'm ER positive but HER2 negative .MRI showed lymph nodes clear, so after the tumour and sentinel node have been examined, it'll be the scary wait to see if the nodes really are clear.

 Been cooking and freezing favourite meals, food for the dog, got in loads of instant meals for helpless partner! Lucky to have my daughter living with us, so she'll be in charge.

I've a rough idea of how incapacitated I'll be but very grateful for any personal experiences and tips. Thanks so much

Country Girl Liz
Posted by

Hello greyh1234

Wishing you well, I had a bilateral mastectomy in June, I was discharged from the ward after just one night I couldn't wait to be back at home !! I had two drains insitu and had to spend my time in bed propped up on numerous pillows. The ward had arranged a District Nurse came to deal with changing drain bottles, and removal when needed after about a week or so.. but after about 6 weeks I was healed well. It was advised not to use deodorant and an unscented soap for washing, I used simple soap. I did have a problem with a bleed on  the left about 10 days after surgery but this is not common and the Consultant was kind and helpful. It was scary and now it seems a lifetime ago !!

A tip I was given was to make sure you have button up PJ's and tops so you can dress easier, I only had 2 button up tops and wish I'd had more !!

I spent a while on the sofa recovering, and was unable to lift anything for a while, even a kettle ! You'll know when you're able to do a bit, but do take it easy you have one change to heal well, so allow time to do so, better safe than sorry, but don't worry and hope it goes well

Having meals stashed in the freezer etc is a brilliant idea, and I bought new PJ's but as I was only in hospital overnight I needed not have bothered, it's more important to sort out preparing being back at home, I have a hubby who doesn't cook so you having your Daughter to lend a hand sounds wonderful. If you're not given a bag to put your drain/s in you can make now if you can sew, it's just a simple fabric bag and tape/handle just long enough to go over your head and across your body.

All the best and hope all goes smoothly

Lizi x
JoBab
Posted by

Hi greyh1234, I'm 63, (see my profile if you like for further details), and my surgery is listed for the 16th of January.  I too am ER+ but HER- and my lymph nodes are affected but no further metastasizes have shown up on MRI scan or CT,scan. (Thank goodness).

I have an appointment with the Breast Nurse on the 7th of January so I am hoping that she will be able to explain what will happen.  I have heard so much about the "dreaded drains" but funnily my main concern is what to wear to accomodate them not how painful or uncomfortable they will be.

It seems like some drains are different to others, people talk about "dolly bags" to carry them around and I have read that you can buy tops with pockets sewn inside to carry the drains around, (I think that may be a little too extravagant just for a few weeks) and I will see what sort of DIY I can do when I know what sort of drain they will use.

So unfortunately I cannot assist you but just wanted you to know that you are not alone in this and just think, you will have got the op over with when I have it to come so it may be that you can help me lol.

I wil be thinking of you on the 6th, chin up and keep a smile on your face.

Jo xxx

Positive thoughts from JoBab
latchbrook
Posted by

Hi  and a very warm welcome to the online community

I'm sorry to hear that you've been diagnosed with breast cancer. It must be a very worrying time for you and your family.

Could I suggest that you join the very friendly breast cancer group and post your question there as you'll find lots of people with the experiences you're after.

To join just click on the link I've created and then choose 'join this group' on the page that opens. You can then introduce yourself and post your question after selecting 'start a discussion' and join in with existing conversations by clicking on 'reply'.

When you have a minute it would be really useful if could pop something about your journey so far into your profile as it helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Edit Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

x

 "Never regret a day in your life, good days give you happiness, bad days give you experience"

What is a Community Champion?

greyh1234
Posted by

Hi Liz

Many thanks for sharing your experiences, very valuable advice, much appreciated x

Wow, only one night in hospital after a bilateral mastectomy - you must be made of tough stuff!        I was told at least 2 nights, possibly 3 but I guess that partly depends on the hospital policy as much as anything else.

Good tip about button up tops and preparing your home for the recovery, I'm on top of that right now!

It sounds very much as if you've made a great recovery - may I ask if you had to have chemo or radiation therapy afterwards? That's the thing I'm really not looking forward to, the post-op wait for the results to see if the lymph nodes are affected.

Again, many thanks for taking the time to let me know how it was for you - very positive to hear about how you survived it all, helps a lot.

Best wishes

Greyh

greyh1234
Posted by

Thanks Jo for your kind thoughts x I'll try and let you know how it went for me, that'll depend on what sort of chaos reigns when I'm recovering!!

Chin's firmly up, smile always in place (when I'm not quietly panicking!!)

brings it home, just what can be going on behind people's everyday smiles and cheerfulness - I always say 'fine' when asked how I am, it's a sort of default setting, want to say, actually no, not fine, got cancer, but you just don't!!

Very best wishes

Greyh

Country Girl Liz
Posted by

Hello Greyh

Hope your not over thinking it all ! It's different dealing with it all as it happens, and it seems everyone has a different experience.

It's not that I'm strong stuff getting out with a one night stay, I hated being in hospital as hubby and I don't like being apart at all and I pleaded with my lovely Consultant to be let go as I'd had all the Antibiotics required and was getting anxious to be home ASAP

Yes just finished Chemo, that was a bundle of side effects but again everyone has a different experience and it depends on what chemicals you're given !  Yes on radiotherapy.. I have just been given the date of Jan 20th to start, so not out of the woods yet, and to be honest some of the treatment has been difficult to cope with, at times it's been hell but each day is a step toward a final goal.

Do take time to recover, be strong, there is lots of advice support and love on here.

Take care you'll get thru it and it will all be behind you at some point, do hope you avoid Chemo if you can and recover well whatever happens

Lizi x
greyh1234
Posted by

Hi Jo

Just wanted to let you know how my op went. I had the mastectomy on 6th, home after 2 nights. No pain at all, just uncomfortable. This was at Eastbourne General. The care was superb from every single person.

Hint -the canula in the back of the hand was very uncomfortable when put in for the anaesthetic -Emla cream (take it with you, widely available) put on the back of the hand an hour before would have numbed it effectively.

Hint - Couldn't sleep the first night and had a bad headache  - been given paracetamol but 4 hours later still awake. Was then given oral morphine - BIG mistake! it did send me to sleep but woke up around 6am and was very sick! I'd avoid this medicine in future. It was the MacMillan nurse who said morphine would have been the cause of the sickness.

Hint -take snacks and fresh fruit with you, food not always on hand when you're peckish particularly as my op was 4pm ish, back to the ward long after supper was available.

Take a front opening nightie or 2 and perhaps have lots of really baggy tops at home to change into -after a week I'm managing to get into regular T-shirts again, but before then I had to borrow husbands shirts and baggy tops, literally couldn't manoeuvre into any of my regular tops!

Please don't worry about the drain. If you have a dressing gown with pockets, it's easily carried around with you. Also ,it's on a very long lead so will sit on the bed near your knees ,well out of the way, it was no trouble at all. Mine only had a total of 10ml over 2 nights and it was removed before I went home.

if you have to go home with yours, any garment with pockets will carry it or perhaps a plastic shopping bag tucked into jeans -however it goes, I personally decided not to buy anything in advance. You'll be able to improvise if necessary.

Having the drain removed was no problem at all, not even sore, just a very odd pulling feeling - wriggle your fingers and toes as it's being pulled out, it helps and it's over very quickly.

Prepare to spend a LOT of time lying around resting at home. First 2 days I felt pole-axed, just exhausted and dozed a lot. Try not to over do the exercises, know when to stop!! they really do help but be prepared to do NOTHING and let others do all household chores for a few days.

I froze a lot of favourite meals in advance and it's paying off.

It's now exactly a week after my op and I'm full of beans, cooking, tidying etc but no heavy lifting on the good side and NO lifting things at all on the bad side! Still needing to have an afternoon lie down and randomly just lying on the sofa when I feel the slightest bit tired.

Hint -be ruthless and when you need to have a lie down, don't hesitate, you'll get better quicker that way if you do exactly as your body tells you

Now just waiting for the follow up appointment  -this is the tough wait!

Wishing you all the very best on 16th -please let me know how it goes, go in feeling positive and you'll do great  .One more hint -I had an early check into the hospital and had to wait 7 hours before the op - (obviously no water allowed) Take something that will entertain you xxx

greyh1234
Posted by

Hi Liz

Your positivity is awesome and Infectious. It's a week after my op, went home after 2 nights stay, which I needed and am feeling so well and happy. Now just waiting to see what the results will bring.

Best of luck with the radiation, great you're over and past the chemo, tough and nasty experience but sounds like you aced it with your go-ahead attitude, I'm going to follow that example .

Busy resting as much as necessary and enjoying feeling almost back to normal for as long as that lasts.

Very best wishes XXX

JoBab
Posted by

Hi greyh

Thank you so much for your very detailed update and I am so pleased that you have now got the op over with, I was thinking about you on the 6th.  The advice regarding something to keep myself occupied and some snacks for afterwards was very helpful and it's tips like that that you can only get from someone who has experienced this.

My op is scheduled for tomorrow, 16th January, and reading your experience has helped tremendously.

When I saw my breast nurse last week she showed me the drains I would be having, (scary) and told me that there would be two of them and she gave me a "dolly bag" to carry the drains around in, (very pretty in sky blue with little white daisys).  Apparently these are donated by the Inner Circle of Rotary.

She also gave me a lovely soft cushion which looks like one of those neck supports you have for air travel but much softer and these are meant to be worn under the arm to prevent being knocked accidentally and to provide protection.  These are donated by a Cancer Research charity.

I was also advised to get a "V" pillow and told the most difficult part was having the  axillary lymph node dissection which is usually performed seperately.

Anyway, I have taken your advice and prepared numerous meals and the house will get a spring clean today.

I dont know how long I will be in hospital for because I have other problems relating to my heart but I dont intend to stay in very long, I want to be at home, recovering and getting on with things before the dreaded Chemo starts.  Apparenty they almost always treat with Chemo if the Lymph Nodes are affected.

I will let me know my experiences after the "big day"

Lots of luck to everyone who is also having their operation shortly, just keep smiling.

xxx

Positive thoughts from JoBab
greyh1234
Posted by

Hi Jo

Will be sending all sorts of positive thoughts tomorrow - go in glowing with hope and you'll be fine xx

Apparently I woke up from the anaesthetic with a grin on my face -just glad to be alive and conscious, I reckon !!

Yup, I think the operation is the 'easy' bit (if you can call it that) - the inevitable chemo and radiation afterwards will be the crunch point. I'd hoped to avoid it but a nearby friend in similar situation is just about to start hers :(  BUT, better the zap all the little horrors so we're clear and we WILL survive it.

Will look forward to hearing from you in due course.

 Truly - have no fear, it's the unknown that gets you and you can handle this situation. XXX

greyh1234
Posted by

Just remembered -one last thing, stack up several pillows on your side of the bed for when you get home and try them out for comfort, before you leave for hospital.

 I found being propped up with afflicted arm resting on raised pillows helped. was able to sleep on my side on the 3rd day home XXXX

Country Girl Liz
Posted by

Jobad, all the best Big hugs will be thinking of you tomorrow xx

Lizi x
JoBab
Posted by

Thank you Liz. I've just found out that I am first of the list tomorrow morning so there will be no hanging round. Early night tonight so I will be ready to kick this cancer's ass. Love and respect to all of you. Xxx 

Positive thoughts from JoBab
Betsy18
Posted by

Good luck for today, big hugs, thinking of you .x