Hi
After being diagnosed in March I have just completed 6 cycles of chemo so will be moving on to the next stage of this process, surgery.
I’m having a mastectomy and axillary clearance in August although I don’t have the date yet. My first appointment with the surgeon is on Thursday so I will know more then.
At present I think I want a recon but am not sure when.
It would be good share experience and support xx
Hi Michelle -
I am exacty the same as you, surgery is next week - my team have been very poor at providing information, Lots has come from this group
x
Hi Michelle 21
It’s Emily here from Breast Cancer Care.
Wishing you the best for your appointment with the surgeon on Thursday. Hopefully this will give you a better idea of what your options are, so that you can start considering what would feel right for you. If you’d like to speak to anyone over the phone about their reconstruction decision, do feel free to give us a call on 0345 077 1893 and we can put you in touch with volunteers who opted for different decisions. Sometimes hearing different personal perspectives can help you to reach a decision.
In the meantime, I hope you receive some more responses on here.
All the best for Thursday.
Emily at Breast Cancer Care
Hi minniem, how did chemo go for you? When did you finish? I had my last one on 20th July so am in week 2 of my cycle. Have you had your pre op assessment? Sorry to hear your team haven’t given you much info. What op are you having? I am hoping to have more info tomorrow.
Thanks Emily that’s really helpful, I will see how it goes tomorrow as to whether the recon is possible now or not. X
Hi Michelle
I’ve just had surgery (L mastectomy & lymph node clearance plus reconstruction) this Monday, having had 8 cycles of chemo since January, with radiotherapy to come.
On reconstruction, it’s a very personal decision - only you will know what’s right for you. I opted for reconstruction because I didn’t want to be perpetually lopsided and/or carrying around a falsie. Although none of us will be able exactly to forget what we’ve been through, I felt that the appearance of a boob roughly matching my remaining real one would be my best bet. Seems rather foolish to be so vain - although I am 60, but it still somehow mattered!
3 days post op, I am pretty sore but it is all manageable with paracetamol. I can wash and dress myself, and darling husband is doing his best to prepare meals etc. Am dozing quite a bit during the day to catch up on fitful nighttime sleep, and trying to avoid coughing or sneezing! So overall, don’t worry too much - it will all pass, and then you can get back to what you enjoy with all your usual energy.
Keep well, and good luck
Hello I thought I would pop over. I had single mx no reconstruction on may 11th and have had 3 X Fec chemo so far and have 3 X T to go, then node clearance and rads after that. I was offered reconstruction but opted to remain flat because j wanted short surgery. The mx was very straight forward was in and home 6 hours, healed very quickly, wound was glued and got full movement back in 2 weeks. The scar is healing well and I have found using my knitted knocker (knitted prothestic) really comfy and looks good. I am very small Chested anyway 36A so not so noticeable. It’s a hard decision to make but you will all make the best one for you, ask lots of questions ask to see photos of different optitons and don’t be afraid to question your surgeons, it’s your body! Flat Friends on face book is a good website if you are considering going flat. Kip x
Hello everyone!
I had an interesting meeting with the surgeon yesterday. After thinking for the last 5 months that I will be having a mastectomy the surgeon has said he will just remove the tumours. He sent me to radiology for a mammogram and ultrasound and it showed tumours have shrunk down to nothing! I am reallly pleased although realise things can always change again. It appears the 6 rounds of chemo were worth it!
Minniem yes whilst I was in with the surgeon a nurse was present and she has said that she will see me when I come in for my pre op assessment. Did you ask about recon? I took a list of questions with me, if you don’t feel happy with the situation could you postpone th op until you have the information you require?
Hi Belmont Rose it sounds like you are doing great so soon after the op. I don’t think it is vain at all, or that age makes much difference. I feel the same although it now looks like I won’t need a recon, I think it is more about wanting to feel as much like ourselves as we were before this happened as is possible. But like you say it is a very personal decision.
Jane I think it’s perfectly normal to have doubts as it’s a big decision but it sounds like you have given thought to the pros and cons.
Thanks for your experience Kip, it useful to know recovery times and options other than recon. I went in with a long list of questions about recon but as it turned out even if I had still needed it my unit only do delayed recon if you’ve had chemo and are having rads and they do it at a completely different hospital which I was surprised about.
Good to meet you ladies and good luck to us all, we can get through this xx
Hi Belmont Rosie I was just wondering how you are feeling now almost a week after your op? Hope everything is going well , keep up the exercises. X
Quaggie, good luck with your ongoing recovery x Keep going with the V-pillow as you will find your comfortable position in the end.
How long do you need to wait for your results?
Hope everything comes back good and you know what the next stage of your treatment is going to be.
?
Hello Everyone
First time posting here - it is such good support and a comfort to read other peoples stories. I have my surgery Tuesday - I have had doubts as to what is best and my journey to this point has been complicated by other health matters adding to my already high anxiety. My bag is packed and am going in tomorrow for my nuclear injection and staying overnight as my hospital is 2 hours away. I ebb and flow between positivity and negativity - all the while knowing how lucky I am compared to some people - they have hopes it has been caught early and despite hearing this and all the words of support from family and friends I do at times feel very alone and very low. I am worried about the recovery time and then like many of you the wait for further tests to establish the treatment plan going forward.
What a wonderful place this is to share ans get support from people who understand the un-logical and at sometimes crazy thoughts we all have on this path.
Sending happy and positive thoughts to you all xx
Hi Quaggie did you have any lymph nodes taken out? How was the experience of having an op? I’ve never had any surgery before either. Good luck with your results and I hope it gets easier to sleep soon.
Hi Disney Diane I think most of us here go betweeen feeling positive and then doom and gloom, as Appletree says waiting is the worst time. I was thrown straight into chemo within a week of dx which sent me into a mad shocked panic but over time it does get easier but I’m still up and down. I was dx in March. Good luck with your op on Tuesday, let us know how you get on.
Appletree and Lilacmoon when are you having surgery or have you had it already? If so would you recommend I get a V pillow? Where do you get them from?
I hope those of you who have had surgery are recovering well xx
Hi as a lady who had Mx and snb removal I definitely recommend a V pillow, got mine on Amazon it takes a bit of getting used to sleeping in your back but after couple of weeks j stsrted to roll over and hit back to side sleeping. I used to pop a pillow under my knees when flat on my back as I would get back ache otherwise. Also hospital gave me small heart shaped pillow to pop under the surgery arm it stops rubbing and helps with lymphatic flow. Was comfy in the car too… Definitely have a pillow in the car for return home from hospital as seatbelt m as you hurt. Kip
Thanks for the good wishes and hints and tips, particularly about the pillows (thanks Kip and Appletree), will be buying a V shaped pillow this week which hopefully will compliment my mastectomy pillow from Jen’s Friends (check the out on Facebook) and a smaller heart shape softie pillow given to me by my first BCN. It’s not a long journey from the hospital to my house but the roads around here are not smooth although my OH’s car is super comfy!
Sending you positive and supportive thoughts Disney Diane, and hope you’re recovering well Quaggie.
Michelle21: My first ever surgery was SNB in June, it was easier than I expected, I had more fear of the general anaesthetic but my anaesthetic was lovely and I had Emla cream applied to the back of my hand so that it would be numb before the canula was inserted. I recovered well although was very confused and forgetful for the first 2 hours aftewards but then eating, drinking and able to go to the loo quite quickly. Was home that same night and just rested up for the following week, taking it easy and doing the exercises. As long as I get the Emla cream for my op next week I’m sure I’ll be fine.
And so you’re going to have a WLE instread of mx then? That’s good news that the chemo has caused tumour to shrink, even though I’m sure that was not easy to go through.
Hope Belmont Rosie is doing ok.
Take care all.
Thanks Kip, I’ve noticed Dunelm sell V cusions so going to head out later to get one as shops are quite a novelty having spent chemo avoiding them!
Appletree thanks for the recommendation of Headspace, however I have had to wean myself off Buddihfy mediation’s as I was using them every night!! I am trying to get back used to closing my own head chatter down without the app. How long was your recovery, ie when could you drive?
Thanks for sharing your experience Jane, it’s the anaesthetic that I’m dreading too! My friend is an anaesthetist and has been trying to calm my irrational fears! You are right although chemo was horrible to go through it was worth it.
I have just been told my surgery is on 16th August. This is the only date I didn’t want it to be as my daughter will get her A Level results then. Talk about Sod’s law. Ive managed to get being admitted delayed from 7.30am to 9am so if she gets into her chosen uni at least I’ll know beforehand but if not I will be leaving my husband to sort it all out. I will just have to keep my fingers crossed tightly.
I hope those of you that have had surgery are recovering well. X
I hope surgery goes well for you Disney Diane x
Oh that’s a coincidence Jane, we can recover together! I didn’t make it to Dunelm today, I will go tomorrow instead. Are there any other things you are getting in preparation for hospital? X
Hi Michelle,
I’ve had my surgery and I’m on the road to recovery and trying to find my new normal.
I tend to sleep on my rightside which was also my surgery side and for the first few nights after surgery I rested on a cushions but then I remembered a friend selling the benefits of the V when she had her treatment.
Luckily I found a decent one in Ikea when my friend dragged me there (hate the place normally!!!) 2 days after surgery.
I tend to wedge my shoulder in to the middle and then bolster myself front and back!! Hope you get the picture ???
Take care xx
Hey Michelle21 , I’ve done a bit of a spending spree over the last couple of months in prep for the mx/recon and recovery: mastectomy pillow, correct fitting bras (hadn’t been properly measured for years until today) and post surgery bras (that I can put a softie in as the recon will not intially be the same size as my remaining boob), drain dollie (search on google although may not need it as will be in hosptial for 5 days and drains should be removed before discharge), front buttoning pyjama tops and casual tops, bio oil for the upcoming scars and can be used now on my SNB scar which is now just over 6 weeks old, a lap cushion to put my tablet on for ease of browsing/streaming etc or to place my Kindle on for reading. Sounds like a lot but with careful planning and research, most things were not so expensive.
I also didn’t get to Dunelm today for the V shaped pillow but will go tomorrow after my pre-op assessment.
Quaggie , good to hear things are going well so far, crossing fingers that your nodes are indeed clear. Keep on taking it easy and look after yourself.
Belmont Rosie , and to you as well that things are going well for you so far, taking it easy and getting some sun but I think we all agree we need a break in the weather and a bit of cool weather for a change.
Appletree , that’s one thing I love about today’s technoloyg and good wi-fi connection, is box sets. Even at home in “normal” life I’ve box set binged on many series and know there is still loads out there I can watch during my upcoming 3 month convalescence - although I must get out and do some walking too!
Disney Diane , hope your surgery went well, we’ll all be waiting to hear your progress when you’re good and ready and get back here.
All the best to you all.
Jane hope the pre op goes well tomorrow. I have mine tomorrow too, we really are on the same schedule! You sound very organised for surgery, thanks for telling me what you have got I really need to get sorted this week. So far I have button up PJ’s and a drain dolly.
Sounds like you are doing well Belmont Rose, although lacking in sleep! Good luck with your results on Friday.
Quaggie thanks for sharing your experience. I am trying not to worry to much. It sounds like you are feeling ok which is great. Good luck for your results on Monday.
All the best to all xx
Well today’s pre-op assessment was traumatic. I like to be different!
Blood pressure and ECG all ok - well within standard ranges/average/normal. As for the blood test, well…
It took 4 attempts!
The first 3 attempts by 3 different nurses (trying 2 different veins inside arm elbow crease, and 1 vein in back of hand - considering right arm had to be used due to risk of lymphoedema in left arm) all failed. I was VERY distressed as am VERY needle phobic and tend to stop breathing during injections etc, but agreed to another attempt to get it over and done with.
The 4th attempt was by a doctor and was successful.
I have photographed my hand showing which vein was successful so the same one can be used for the 2nd blood test on Tuesday. Without the 2nd blood test, my surgeon will not perform my operation (mx/recon). Although I can’t remember why I have to go for a 2nd test on Tuesday which is 2 days before the op.
The very nice doctor also told me I should definitely drink some vodka tonight - and even recommended a Hungarian vodka from his home country! I shall find a way to get a bottle of that!
Something else new: was given Octensian skin wash to use from Sunday thorugh Thursday - use on body each day plus also on hair alternate days. Also have a nasal ointment to apply 3 times a day for 5 days leading up to the op. I know all this is to do with ensuring no chance of infection/bateria etc but was surprised as had no idea such things were given to be used.
I did, however, manage to get my V-shaped pillow from Dunelm, and 2 v-shaped pillow cases (one is a dusky pink colour and the other blackcurrent colour), and 2 navy colour throws for my sofa. I didn’t realise how BIG the pillow is - not sure what I was expecting but it’s massive - size matters!
Hope all went well for you today Michelle and was less traumatic medically than mine. For button through tops, I can recommend Primark for pyjama tops and New Look for general wearing tops (got a couple that are button through and tie front), although New Look tops are not so cheap at £12.99 each but of course are not just for wearing after the op but anytime unless you might associate them with surgery.
Quaggie, sorry to hear of your troubles with dressings and hope you can get it all sorted. For sure talk with your GP and ask for advice/help. Please consider my shoulder a virtual one to cry onto, having the meltdown sobs now and again is quite normal and I’ve eventually had a few myself, at completely random times. Big hugs to you.
Evening all
I had full nodes clearance last Thursday which I understand went well. I chose to stay in overnight so they could keep an eye on me and had a pleasant stay in Hospitsl . I felt very sore and tender however pleased that I was able to get out of bed and go for walks around the hospital .
I was discharged last Friday afternoon with a drain fitted underarm which felt very uncomfortable however manageable - it was just remembering that I needed to take it everywhere with me at all times . Sleeping was uncomfortable having to sleep on one side and wishing the day would come when I could have it removed.
I had my drain removed earlier this afternoon ( had drain in place for 5 days ) as fluid discharge was between 20-30 msl within 24 hours so was told it could come out .
5 hours have now passed and i noticed that where they removed the drain , they have covered the cut with a plaster . The plaster is now soaked through and I appear to have now developed a ‘leak’ which has gone through to underarm sleeve clothing … is this something I should be worried about?
My underarm looks a bit swollen however the incision which has been neatly stitched seems intact however very sore and dry - it doesn’t help that I can wash my underarm properly as it tends to sting a lot where moisture …
I am inclined to leave it for this evening and review it tomorrow . Just concerned of it leaking overnight and possibility it could turn into a seratona - fingers crossed It doesn’t come to that !