Bilateral mastectomy

Oh you poor anesthetized loves… it stinks doesn’t it. It may sound hard to believe but I was weepy as a kid watching that bit of ET when the flower perks back up and ET’s not dead… you know the bit, sniff. Just couldn’t put my finger on why until a friend of mine pointed out about how the stuff stays in your fatty tissues and takes at least a week to leave (the fatter you are the longer she said). It does pass though but in the meantime the only thing to do is try and do things that make you happy in some way (no stealing the hospitals morphine though, they need it LOL).

Anne it does take time and effort to get used to the new image and you really have to challenge how you feel about breasts in general, I’ve been surprised by how much they don’t matter to a lot of other people and I’ve never wanted to surround myself with the kind of blokes that say things like “Look at those knockers” in fact being invisible to them is one of the pluses, being a brainy person (apparently) it makes it easier to get respect from some men I think. I know that sounds sexist but I’m sure you’ve all had men talk to your chest haven’t you?

There’s a wonderful site called breastfree that I recommend you read some of the stories there I found it quite inspiring. I won’t go as far as to say I love my new body yet, or even like it but I don’t hate it and I can imagine that one day I might even like it.

you’ll find it at www dot breastfree dot org

But don’t rush, try and make the most of life as I think it’s almost impossible to feel good about yourself and your body when you feel cr*p in general from chemo or anaesthetics so maybe leave worrying about that for another day if you can.

lots of love and hugs (gently of course :wink:

Angie

Ang I forgot to say Boots does the spa tone and me red cell count has jumped back up in the last 10 days so I think it’s working nicely.

Dipstick - My best friend has a mastectomy in Jan 07 and at that time wanted them both off, but the consultant would not do both as there was nothing wrong with her other one. We have the same consultant so when I went for my appt with the cons I asked her why she would not take my friends other boob. She said it was because most women say ‘take them both’ but regret it afterwards, however if she were to go back to her because she was really not happy with the remaining boob then she would remove it. My friend was also thinking about recon a month or so ago, but now after seeing me flat chested, I think she would prefer to get the other removed then she does not have any more worries, or mamagrams on the one remaining. She has had lumps in the remaining boob and she is always worrying about it. She also feels she is lop sided and is very aware of that. I am 51 Dipstick and to be honest when all this came about I considered recon, again the cons said she would not do recon straight away because I may need chemo/radio, but now I think I am quite happy to just use prosthesis. I have heard a lot of stories and may at this moment in time do not think it is necessary for me. I dont know whether my attitude may change in the future. Whatever is decided Dipstick, good luck. Luv from Angela xx

Dotchas: I now have to satrt washing the scars with simple soap whilst in the bath but I am quite afraid to touch them, also the sensation I am getting is sooo strange. My consultant has suggested rubbing Avon glycerine and silicone hand cream into scars, this is suposed to even the scarring out. I think I may now have fluid build up along the scar tissue as well as under both arms. They drained under my right arm on friday, was told I had a tennis ball of fluid there, and a golf ball under my left but they left that one. Felt better after it had been drained. I could not stand to watch tho. (turning into a wimp I think)… Luv Angela xx

Happyshopper: Sorry to hear of your ordeal, sounds like youve been through the mill. I don’t know if it is any consolation to you but you dont have to be flat as a pancake, you can be any size you want. I quite like the idea of having different sized breasts for different occasions…(am I an oddball) even if they are falsies. I do not fancy the idea of having recon at the moment whether that may change in the future I do not know. Love and best wishes to you Happyshopper. Angela xx

Vertangie: Will get some spa tone tomorrow. thanks for the tip - I will also look at the site breastfree dot org. I feel like you do about my body, it feels odd, but don’t hate it. The bruising is coming out now and I am getting a bit of fluid build up along the scar but have been told I need to start massaging - this feels sooo strange tho. When does it feel natural to rub yourself (if you know what I mean) in that area and for it to feel part of your natural body, or does it always feel strange? Lots of love Ang. Hope you are well, I luv your positivity. Angela xx

Angela
thanku for your reply.
I understand what your onc means about changing your mind but only having one boob poses problems in itself. I cant really see the difference of having 1 or 2 off, it gets the job done all in one go. Now your friend has to physche herself up for another op etc. and maybe more time off work. I have looked on the breastfree site and it was ok. The more I hear about recon the more I think no thanks. but then Im 51 and maybe if I was in my 20/30s it would be more of a big deal. I will see my onc on thurs and see what he says. I will prob go and see my bc nurse and talk face to face too.

love and best wishes to you all
take care
Chris x

dipstick - that too is the way I feel - If I had been in my 20-30’s it would probably have been a big deal but being older…dont think I’m so bothered now.
Luv Ang xx

Morning - hope your recovery continues to go well Ang. I am now 4 weeks post-op and feel more comfortable about cleaning the skin normally and rubbing oil into the scars. I am still very numb under one arm from the axillary clearance and still have quite a seroma on that side so feel I can’t put my arm down straight by my side but the seromas are reducing naturally and feel better every day. Our breast care nurses recommend Bio-Oil for scar tissue massage - it is in health shops etc but is quite expensive. Smells lovely and feels great though.

I am in my early 40’s with two children under 5 - funny how quickly the pain of the surgery resolves really and memories fade but I am doubtful whether I would go for reconstruction. Currently having chemotherapy too, then radiotherapy and it is hard to imagine that having permanent ‘breasts’ will be important after all that. I imagine I will just want to get on with life but my views might well change. I am looking forward to getting the silicone prostheses next week.

I am so relieved that my surgeon gave me the choice of bilateral (when I asked) as I was big breasted before and would have been so uncomfortable I think and also so aware of body image. I only wanted it for cosmetic reasons. Being flat chested is different and I was lucky as I seemed to adapt quite quickly.

Good to be in touch as always with other women who are going through this same experience - the forum is so supportive.

Best wishes and happy gentle exercising
Tanya x

Thanks for that Tanya.
I will ask my onc if he would be happy to do bi lateral mx, dont think it should be his choice really. Can I insist? Body image is important, if I have to have 1 off (no choice) I would be very concious of myself, at least with 2 I would feel ‘tidy’ and may as well have 2 prothesis than 1, I could even begin jogging without worrying about BOUNCE!!! Will see onc for 2nd tax on thurs.

best wishes girls
Chris x

Tanya - how is the chemotherapy going. when did you have your first/last session? are you having any effects from it?
I must say Tanya that I am glad (if thats the word) that I had bilateral instead of just one, I did have the option of having a lumpectomy from the left one but there would be very little breast tissue left (and would always be wondering, and have to have mamograms) so opted for bilateral, (tho I cannot comment as never had just one). I don’t feel embarrassed about not wearing softies. I am happy to go flat chested, I sometimes wear a little jacket and put a scarf around my neck just to take away the flat chested look, and I dont think you would be able to tell quite honestly, although I dont think I was as big as you, I was 34DD. I wore my softies today to go out (dont wear them very often still quite sore) but had to laugh they kept popping up to look outside. Kept having to push them down to hide them. (down boys, now stay!) Think maybe I should pin them in. Look forward to getting my silicone ones too. Am going to see BCN tomorrow, find out the results of the cancer. I am feeling a bit worried about that now, I think I will probably need chemo as I think they just do it to make sure. I think I will have to try that Bio-oil as well as the Avon glycerine and silicone hand cream that my Consultant recommended. I think I may feel a little more comfortable about touching the area now, although still feels very odd. I try to keep massaging every morning and night to get used to it. To be honest Tanya I dont think I would want to go through recon espec having the two small children. How on earth do you cope? having to look after them too must be very hard for you. I sometimes get a shooting pain in my right nipple (is this phantom pains like you get if you have a limb removed) do you every get that? Let me know how you got on with chemo. Luv Angela xx

Dipstick - I think if thats what you want Dipstick you ought to stress how unhappy it would make you not to have bi.

Think I have another couple of tennis balls under my arms, wonder if I will get drained again tomorrow.

Anyone for Tennis?

luve to you all. Angela xx

Further to the comment above about Bio Oil. It was recommended to me because I had a large lumpectomy with quite a ragged scar - a bit like bad needlework! I used it religiously for a couple of months and it really worked. Even though it is expensive it does go a long way. My scar is now a nice SMOOTH thin white line.
Jane
x

thanks for that JaneRC, I will have to try it.

I think across my chest is now going hard, It feels like how I imagine a gorilla’s chest to be like, like I want to bang it (if you know what I mean) has anyone else had this feeling? Does it soften up again?
Luv Ang xx

Hi Ang

I’ve also got the hard feeling across my chest. I had my mastectomy in August and had trouble with my drains, ending up with a seroma that needed draining. My BCN and onc said that the draining could only continue until I started chemo unless it got very uncomfortable. Eventually the fluid started to solidify, which my bcn said was good news. She also said that it could take several months for it to be reabsorbed back into my body, hence the hard feeling. It has gone down slightly and is now beginning to feel a bit softer again, but I have a small area on my scar line which looks like an inflamed spot, not sore to touch though, which I will get checked out on Friday when I next go for my onc appointment.

Take care

Jackie

Hi Ang. My chest seems to alter through the day - sometimes the seromas are quite fluid and noticeable and sometimes they feel solid and I think they may stay as they are for ever! Weird. I have only had about one shooting pain in my nipple that could have been like phantom limb pain but a friend in the same block of flats here who had a single mastectomy has suffered this problem quite a lot - she sees it as a ‘problem’ in a semi-humourous sense that it makes her suddenly call out for no apparent reason.

Hope you got on ok with the BCN. Let us know how it went.
In answer to your question I had my first chemo last Monday and had a yukky but manageable week. Feeling loads better this week. I will have three cycles of FEC, 3 cycles of Taxotere and 3 weeks of radiotherapy. All in all it will be done within 6 months though so onwards we go. My husband is being great with the children and they have some school and nursery time as well as a good friend and family who will take them out so that I could rest - needed last week! They are a good motivation for ploughing on through this. I had to have a CT scan last week because of the size of tumour and extent of lymph node involvement so am waiting on those results.

Great to hear the good results with BIO-Oil Jane - it does smell and feel lovely to use anyway so I am using it regularly.

Best wishes

Tanya x

Well my results are good news (I think) if you can get good news with this.

Results:

Right side: Invasive ductal cancer, grade 2 with DCIS, 19mm in size, free margins. 4 lymph nodes were sampled. 1 lymph node came away with the mastectomy which contained cancer but the other three which were taken away, including the sentinel node did not contain cancer. Oestrogen receptor positive.

Left side: Invasive ductal cancer grade 1, 5mm in size, surrounded by DCIS, but total of tumour size 20mm, free margins, again 1 node came away within mastectomy which was clear. Oestrogen receptor positive.

So I think that this means it has not spread (hopefully). I am glad I had the left side removed now as I did have the option of a lumpectomy here, but I would not have had much breast tissue left, so opted for mastectomy on the left side too.

This one crept up on me as I had no idea about the left breast, they found this from the mamogram. I could not feel any lumps or bumps in this one (scary eh?) It was the right breast that alerted me, where I found a lump.

So I am now being referred to an Oncologist to discuss the benefits of chemotherapy. I dont know whether I will need chemo yet, but suspect I will, just to make sure, and to be honest after going thro all this might as well go the full hog and hopefully kill this beast once and for all. I will need radiotherapy however but that will happen after the chemo, if I have it, also I will need to take Tamoxifen for the next 5 years, again that will happen after the chemo.
So I feel relatively happy with the results (I think - if happy is the word).

After discussing results the BCN examined my scars, she said that they looked older than just 2 weeks old, that they were healing very well. She told me that she could drain my golf balls/tennis balls (whatever) but that she would prefer not too, but if they were too uncomfortable she would. I do feel very tight across my chest but decided I could live with this a bit longer. She said that they would only drain them 3 times anyway. She told me to massage the area towards the lymph nodes in my chest and also down to my sides. She also said that it was a matter of weeks (not months, which I thought it could be) for these to disperse.

Jackie - thanks for your comment. You seem to have had fluid for some time if you had your op in August, I had mine 2 Oct. I suppose I did not think that the fluid would solidify either, is this what naturally happens, it solidifies and then gets reabsorbed, but if your BCN said this was right, then maybe that explains the tightness across the chest. It seems that your BCN believes it takes months to disperse and not weeks. Maybe my BCN was trying to make me feel better. We’ll see. Good luck with your appt on Friday.

Tanya - think I will prob have the same as you re chemo. will let you know. Wat is FEC. Also I have read that Taxotere can make the top layer of your nails fall off from your hands and feet, a tip I read was to put very dark nail polish on to try and prevent this from happening, but to use it before you have the taxotere, dont know if this will help. If I am to have chemo BCN said it would be 6 sessions over 18 weeks. Oh, I asked the BCN about Bio oil and she said it would be ok to use, but when I went into the chemist she advised against using Bio oil at this early stage (2 weeks post op), ironically she too had a mastectomy 6 years ago, and went on for recon 1 year later. Its amazing just how many people suffer with this disease. There was a point when I walked around town thinking ‘no one knows what I am going thro at the moment’ but to be honest, this affects more people than we are probably aware. There are probably a lot more people thinking the same!

I do admire women who have to look after children, as well as get on with this disease, I dont think I could cope with that, my children have to look after me! I have a fantastic daughter who is 21 (lives with me) and looks after me wonderfully. She helps me to bathe and get dressed and cut up veg and carry pans, carry the kettle etc, I dont honestly know what I would have done without her. She takes me out in the car here and there, as I am not allowed to drive for 6 weeks. She gets and carries my shopping etc. Keep me informed of how the chemo is going Tanya, glad you are feeling better. Good luck with your results and let me know about those.

Jane - how long after your op did you use the Bio oil? Maybe I should wait another couple of weeks before I start to use it.

Thanks ladies for all your comments - please keep then coming - love your posts. Lots of love everyone, take care. Angela xx

Great re your results Angela. I guess I started the Bio-Oil properly myself about a week ago - which is around 4 weeks post-op. FEC is a cocktail of 3 drugs (5-Fluorouracil, Epirubicin and Cyclophosphamide). I do that for 3 cycles (once every 3 weeks) then taxotere once every 3 weeks. Thanks for the tip re nails. Not looking forward to it. Feeling much better this week after chemo anyway - and mastectomies feeling absolutely fine now with movement under clearance arm much improved too, so onwards…

Best wishes

Tanya x

Congrats on the results Ang. It’s so strange as I was exactly the same re fining lump on the right and them finding the left one via mammogram.

Sounds like chemo might be on the cards for you but that’ll be down to your onc as your remaining nodes are clear so it’s not a given. In my case it was because both cancers were grade3 and I’m under 40 so 6 rounds of FEC was the prescription, all done now, just rads to go which I have had to delay due to car trouble and being rural they haven’t invented public transport around here LOL.

Anyway happy healing and I’d start using the bio oil now. I’m a cheapskate so I just bought some organic vit e oil, It’s done the same job nicely. scars are blending in well.

Tanya - thanks for your reply. Seems you just get over one session of chemo then its time for the next. Still as you say onwards and upwards. It will all soon be over. Glad the mastectomies are feeling good, so hopefully in another 3 weeks for me I will feel a lot better too. lots of luv Angela xx

Verangie - good to hear from you. I wonder, maybe I will have 6 rounds of FEC, is that better than 3 FEC and 3 taxotere, or are they all the same sh*t. How did they give you the chemo Ang. (Did they take blood from your foot and take your BP from your leg when in hosp) they did with me with having had lymph nodes removed. Will they give the chemo intravenously thro the arm/leg, or tablet form, and do they use different veins, cos I’ve heard your veins get shot. Hey ang, think you should step up the pace now the chemo is over, get fit and jog to the hosp… Hope the car better soon. All in all Ang how did you find the chemo, looking back? Did you treat it as a poison or a cure? Actually I do have some vit E oil, may use that, Just want to use anything I can really to try and even out these pucker marks in my scars, although the nurse said that the stiches have not disolved yet and that when they do it will probably even out a bit? how long does it take for stitches to disolve? Are your wounds flat Ang, or are/were they puckered at some point? So many questions. 10/10 for all the right answers…

Love to all Angela xx

Heya

FEC and Tax are different, it really depends on what your onc is into. A lot use 3 fec and 3 tax and a lot use fec and some use e-cmf (which is 4 drugs), They’re all supposed to kill any little stray cells that got out and are all scarily effective but not perfect.

Jog to the hospital LOL, it’s 30 miles EACH WAY :wink: I’m not that fit :wink:

Ok the scars are neat not puckered but there’s a bit of what we call a dogs ear at the end of each one ie a little flabby under the armpit.

The internal stitches take months to break down I think but you’ll get a good idea when the seromas go after a few weeks. Mine are very neat indeed actually and in case you’ve got that someones put a strap around your chest feeling that gets easier too although I still feel like I have a bit of a strap it’s just not uncomfortable anymore and it doesn’t feel like anything will go twang now either.

My chemo nurses did just use the veins in my arms which a lot of the ladies who have lymphoedema think is unacceptable. I trust the nurses though and didn’t want a port so didn’t complain, that said heres how the vein description progressed.

chemo 1: you have nice veins, that won’t last.
chemo2: veins are still good, excellent.
chemo 3: Nope that ones gone, next arm
chemo 4 :third vein found, used and abused.
chemo 5 & 6: a bit of a search for a volunteer (veins now know to hide).

at the end of each 3 week cycle it would feel like I’d been weight lifting or something! But they are starting to recover now but a friend in the village who did chemo 20 years ago said hers never completely recovered. Gulp.

It’s not so bad though, but a few of the girls who have ports have appreciated them… most of the time :wink:

As for poison or cure… both in all honesty. It makes you feel like sh*t but bigger picture, shi*t for a few months in order to live a long fulfilling life. OK can do.

Hows those nice sloshy bumps doing (the seromas). Massaging really does help the fluid drain away. I didn’t have much but massaging helped.

Hi Ang
Hope you feeling well. thanks for your reply. Do you sometimes feel that your bra has ridden up over your nipples and want to pull it down? What is a port? Is it a Hickman line that they put in your chest and it stays there whilst you are having treatment? I still have my sloshy bumps, there does not appear to be any change in them over the past few days, think I may have a tennis ball under the left now, still got golf ball under right. Although when bathing this morning I felt like I could feel the fluid moving, strange or what. I do my exercises twice a day and also massage twice a day, I think I can bear to touch them for slightly longer now. Feeling under the weather today Ang, don’t know why, feel like I cant be bothered and also tired, I am laying on the sofa. I must try and go for a walk later and get some fresh air…try and take my own advice. Period started once again, wonder if that has anything to do with it.
Lots of love Ang
Angela xx

Heya Ang

My god we are in synch. Period here too. Slowed right down during chemo and are making up for it in the last 2 months. Chemo does send some people into menopause but I am apparently very much not one of them.

A port is a device they use to give chemo, hickman line is one of them and also portacaths (like a little device for taking bloods and giving drugs), some patients get the some don’t. I don’t know who gets one or why.

Yeah you can feel the fluid, it is odd isn’t it. Keep doing the exercises, they really really help in the long run. Fresh air really helped me, as did getting into the habit of a short daily walk which I continues through chemo as I read that the best wasy to deal with the fatigue is to get a little excercise every day, so I started before surgery, and as soon as the drains were out started going every day. Think there’s been 4 days since Feb where I haven’t walked at least 30 mins, ie down to the river and back up the hill home (and it’s one of those sneaky hills that you have to drive in 2n because you loose revs in 3rd, ie exhausting if you don’t walk everyday :wink:

So yeah get a little fresh air I reckon. And then come back and slump on the sofa again (which I am doing watching have I got news for you.)