Just very upset!

[Trixielady]

Yeah thanks ladies it's lovely to read what has happened or happening to us ladies , it's the support we all need XX

[Mai7]

Hi Trixielady,  I think we all feel slightly different about diet during chemo and it really is up to you what you want to try.  Personally, I just ate as healthy as I could but if your tastebuds change, which mine did [temporarily] then you are just pleased that you have managed to eat something.  Here's my blog if you want to have a look at some of my coping mechanisms:  lifeafterlola.com

I think it is best to have some options to pull out of the hat but keep an open mind.  Chemo was not as bad as I expected as the medication you are given stops nausea.  Definitely join the monthly chemo thread and make friends with others going through the same.  I did and still keep in touch with my chemo buddies. xxx

[Nikki49]

With regard to diet there’s a lot of differing opinions about what a cancer patient should and shouldn’t eat.

I just followed the advice of my oncologist which was if you fancy it, eat it. The only thing he did say is try to avoid foods that they tell pregnant women to avoid..... like soft cheese, runny eggs, rare meat, unpasteurised yoghurts etc etc it’s because your immune system will be compromised. He also said probably best to avoid alcohol the odd glass is ok but to be honest I didn’t fancy it anyway.

Side effects differ depending on the drug regime you’re on & 2 people on the same drug don’t necessarily have the same side effects. Some people sail through & some are proper poorly, I was somewhere in the middle.
My oncologist told me to look up my chemo regime on Macmillan’s website when he couldn’t find a leaflet to give me.

I had Fec-t which seems to be the most common concoction.
I had 6 rounds in total, 3 rounds of Fec & 3 rounds of T.
Some people have 4 rounds of each.
I was given 1 round every 3 weeks.
You get given a carrier bag of drugs to combat the side effects to take home with you.

Fec made me feel nauseous within a few hours & lasted up to 10 days, I wasn’t ever sick.

T pleased to report no nausea, no symptoms (other than losing my sense of taste) for 5 days, then you get bone ache, I felt like I’d been in a car crash.


It’s a good idea to keep a record of side effects to discus with your oncologist before next infusion, that way then can amend the contents of your goody bag. Remember you don’t have to suffer, they have all sorts of different drugs in their arsenal for you to try.

The reason I think I put on so much weight is a combination of the steroids, the boredom, sofa surfing and just trying to find something you can taste especially when on the T drug.

My oncologist wasn’t worried about the weight gain, he said you can lose it when treatment has finished, they don’t like you to lose weight as they need you to be as healthy as you can be whilst on chemo.

The best thing I did was join the my monthly chemo group on here - you’ll find it in Going through Treatment > monthly chemo groups then join the month that you start chemo. It was invaluable as you can share any worrying side effect & quite quickly a few of the others will say oh yeah I had that too... instant relief!
In my group there were just under 40 of us and quite a few of us are still in regular contact.
x

[Trixielady]

I've been looking at different diet's but not sure about anything , hopefully during chemo I can keep an eye on what I eat but my weight goes up and down due to an underactive thyroid I'm 12 stone at the moment X I did hear that your taste buds change and people don't want to eat , what happened to you during chemo , how often did you have it and how did it make you feel ? Xx

[Trixielady]

I'm still struggling with everything , my arm hurts although it's only a week tomorrow since I had my lymph node clearance operation , scared of results due next Thursday, hopefully drain will come out on this Friday , muscle in breasts sometimes hurts or at least I think it does , sick of being off work but not well enough to go back and don't know when my chemo starts , I've got a lovely hubby & family but not sure what to say to them about how I feel they all think I'm handling it wonderful and that I'm so strong ! Don't really even know how to use this forum

[Nikki49]

Actually there is one thing I’d do differently and that is to curb my eating whilst having chemo!
Don’t believe what you see in the films, like I did.... I thought ‘well at least I’ll lose some weight’
Nope, not true..... I put on almost 3 stone whilst on treatment & it took an age to get rid of it

[Nikki49]

I agree with Trixielady,

In that I am so pleased I didn’t go for the back or the tummy option. All ops leave a reminder that the surgeon was there once - I still get the odd tingle, or sharp stabbing pain under my arm or an ache in a boob that actually isn’t there anymore!

I dismissed the back option straight away as I didn’t want a scar on my back.

I did seriously think about the tummy one as hey who would turn down a free boob job & tummy tuck! However when I was told, in great detail, how they do it, I wimped out !

I know I was lucky that as my cancer was deep in the breast meant they could keep my skin but it wasnt deep enough to affect the muscle so I was able to keep that too.
In a bikini you wouldn’t know I’d had an operation let alone a mastectomy.
I had a nipple made and then had the the colour tattooed, If you don’t look too closely you probably wouldn’t realise.

Basically if I had to do it all again I wouldn’t do anything differently,

[Trixielady]

I've just had a skin sparing mastectomy with a temporary implant and will wait until after chemo & radiation therapy before having a reconstruction and an up lift , also just had a lymph node clearance but finding it more painful & uncomfortable they used pig skin & mesh , I'm pleased now that they didn't use my back or tummy , I'm taking one day at a time and waiting for my results from lymph node clearance

[Becca_BCC]

Hi Elfmum,

I'm sorry to hear you're facing this tough decision at the moment.

It can be difficult to know what to decide, we're actually thinking of creating a digital tool around this as many people experience the same feelings.

As you haven't had a reply from the community yet, you're more than welcome to call one of our nurses to talk it through, you can reach them on 0808 800 6000.

Take care, Becca at Breast Cancer Care.

[Lorraine H]

Please feel free t keep asking questions.

I was in your position a few months ago and talking about the little things is good, it gives you things to focus on.

in a few months you will be offering your support to others and glad to help other ladies on here xxxx

[ElfMum]

Thank you Nikki and Lorraine. My friends are all lovely but this little gang on here is helping me feel far more positive and brighter about everything. 

[ElfMum]

Thanks Helen - you are all being so much help I am so grateful. Xxx

[Nikki49]

Hi Elfmum,
I am a single parent with no help at home, ok she was a teenager so I didn’t have to do that much for her but I cooked for us both & looked after myself. I did my food shopping online for a couple of weeks whilst I was unable to drive.

my dressing was removed by the surgeon at a follow up appointment about 2 weeks after surgery. He doesn’t believe in changing dresssings unless they’re soiled, better infection control apparently!

Things I found difficult at first:-
- raising my arm above my head, although I think that was more from the axillary clearance rather than the mastectomy

- carrying the drain around with me for a few days

- sleeping propped up on pillows, my usual sleeping position is on my stomach so that wasn’t gonna happen for a while.

I bought a bra from macom medical, was expensive but I got good use out of it with the 3 different surgeries I had.
Just the thought of wearing an under wired bra made my bum twitch for a couple of years lol

I did have some cording along the length of my arm which was a vile sensation.

Pleased to report it all went away eventually.

I am left with some pretty impressive scars under both boobs which have now faded to a thin white line & a wide scar about an inch long in my armpit. My armpit & a little way down the inside of my arm is completely numb. And chemo is a nasty memory.

But after all is said & done I believe it to be a small price to pay for my life!

It all seems such a huge mountain to climb when you’re first told but it does get better
xx

[helenann]

Hi, as Lorraine has said you can do all your 'personal' hygeine stuff straight away - I managed to use the toilet by myself in the hospital more or less straight away after the op once they detatched the drip I was on.

I used baby wipes to wash myself and dry shampoo on my hair while I had the drain in - I think I had my drain in for over a week (its so strange the way you forget some of the stuff you go through - at the time you think you'll never forget any of it but here I am nearly 3 months post op and I can't remember a lot of stuff - which is a good sign I think).

Like Lorraine I got up and got dressed every day, put my make up on etc (I had lots of visitors so I didn't want any of them to see me without my make up on). I had either a district nurse or one of the Breast Care nurses visit every day to change the dressing and measure the output from my drain.

It's good to have some front fastening shirts/blouses for a while so you can slip your arm in rather than trying to pull something over your head.

I was out walking getting some fresh air after about 5 days I think - not too long after op anyway.

Once my drain was removed I had lovely long showers (It felt like heaven).

You might want to get a 'V' shaped pillow to rest your arm on in bed at night - I actually just used an ordinary pillow to prop myself up but loads of people on here say the 'V' shaped pillow is really good.

I had some strong pain killers for a couple of days, but soon was using paracetomol and ibuprofen for a while - so make sure you have some of them in. (didn't need them for very long - but it was good to know I had them in case I felt I needed them).

Also get yourself some comfy bra's - I wore a bra in bedat night and through the day for a good while - Asda or matalan sell them quite reasonably priced.

Have you got a date for your op yet? It'll take a lot off your mind if you're as prepared as possible - so if I think of anything else that I feel might help I'll let you know.

Take care, Love, Helen xxx

[ElfMum]

Thanks again Lorraine H that’s put my mind a rest a bit, it’s silly how you can whittle about little things but I suppose it stops you worrying about the big things for a while 🙂 

[Lorraine H]

Answers to some of your questions,

toilet & personal care is okay straight away. You will be a little unsteady on your feet for a few days so don’t rush about.

I had 2 drains in for 6 days and did not shower until they were removed. You can wash and use wipes. aloe gel is good for helping you to feel fresher.

I was told not to raise my arms above shoulder level for the first 4 days but I did wash my hair (carefully) after 3 days. I got my sister in law to dry and straighten it though. A few days later I did my hair styling too, just slowly, a travel hairdryer is good at first because they are lighter.

I showered daily after my drains were removed but the drain site dressings need to be kept dry. I found it easier to remove and put on fresh dressings.

i started having baths after a couple of weeks - when my steri-strip breast wounds were removed. 

E45 is good for wounds at first but I now use rosehip oil.

I put on makeup and get dressed every day - it may be just leggings and button up tops for a few weeks. 

I started short dog walks after a few days, fresh air and short walks are good.

 I’m 3 months post op - back swimming now, longer walks, feeling a lot more back to my old self xxxxx

[ElfMum]

May I asked more down to earth after operation questions please,  How much and how little can you do I have been told I will not be able to wash my hair or pull on my lymphoedema stocking, and that no free care help will be available so I have to rely on friends but (sorry) are you able to wipe your bum?  How long before you can shower? What are you able to do from the start and how quickly (on average) before you can do everything again?

[Nikki49]

I was diagnosed at 49

I had a right side skin sparing mastectomy, they inserted a temporary implant to preserve the pocket.
I was horrified with how it looked when I woke up.

I then did 6 rounds of chemo.

When I’d recovered from that I had the temporary implant replaced with a permanent one.

6 months later I had the left boob reduced to match.
I’m extremely happy to report I now have boobs that are more pert than my 20 yr old daughters..... every cloud and all that.

Initially I asked for a left mastectomy but was told they don’t like removing healthy tissue!

That was 5 years ago, everything has softened up, so boobs look & feels very natural. I take my health much more seriously now and am fitter than I was 20 yrs ago.

Best of luck
xx

[Lorraine H]

Helen - my mum had a nipple reconstruction and tattoo about 12 years ago (mastectomy due to DCIS) she was very pleased with the results xxx

[helenann]

Elfmum - Just in reply to your worry about hating the way your breasts will look different if you decide on having just the one breast removed - I have to admit it is hard to look in the mirror and see how different they are - they look stupid🤣🤣🤣. But, i'm clinging onto the fact that my consultant has told me they will 'sort it out' and I think they might even look a bit better than before (some small comfort). So, I can't lie as at the moment I do hate the way they look, but I just keep thinking its not for ever and by this time next year I should be sorted.

Another thing for you to put into the equation is that I'm older than you - I'm 62 - and I'm not sure how long the impalnts last for - don't know if they'll last me for the rest of my life or whether I'll need them replaced at some stage. I never asked this question (wish I had) so maybe this is something else to think about.

I also totally relate to you when you say about putting a brave face on it all for others - I've done that from the beginning and still doing it now - which is why this forum is brilliant - you can rant and be yourself - admit youre scared and angry and all the other emotions that come along with the diagnosis.

Lorraine - thats great that you managed to keep your nipple - I do miss mine - which is why I'll be wanting a new nipple made in the future. I agree how fantastic our surgeons are - the things you find out after you get the diagnosis - but this forum is fabulous to help you get through everything - I was completely devestated when I got my diagnosis in August but I've been coming to this forum every single day and its been a godsend.

xxx

[Lorraine H]

I think that some (a minority) of implants ‘fail’ e.g. problems with healing.

There is then an option to have a flap or diep reconstruction, go flat, delayed reconstruction.

I thought I would feel weird about having a healthy breast removed but apart from a couple of ‘wobbles’ I’m happy with my decision. I’ve got matching boobs and not got to worry about breast cancer now.

it is a very personal decision, you will know when you reach the treatment option that is best for you.

I wanted to look the same, keep my skin and nipples with minimal scarring but have sacrificed some physical sensation.

I’m 3 months post op and have reached a point where breasts are not the first then my mind in the morning, and the last thing at night.  

Get lots of advice and ask lots of questions and you will choose what is right for you xxx

[ElfMum]

Sorry my first reply was to Lorraine I did not see yours at the time Helonann thank you both for your replies, i am sure I will be back later with more questions.

[Lorraine H]

Helen - your first paragraph could have been written by me!

Same dates, diagnosis and mastectomy advice.

i had a double mx with Braxon prepectoral reconstruction. I have retained my nipples and even a mole!

I’m glad your reconstruction is going well. It is amazing what our surgeons and breast teams are capable of.

best wishes, Lorraine xxx

[ElfMum]

Thank you so much for your reply do you mean that if you have an implant you could later choose to use your own tissue and have it done again? My gut instinct was to keep the other breast but I wonder if I will hate it and worry it will turn cancerous too I know they will keep an eye on it - it’s so hard to decide.

[helenann]

Hi - My 'story' is that in July I noticed a change in my right breast with some puckering and dimpling and took myself off to the doctor who refered me to the breast clinic - it was a one stop appointment and I had mammograms, Ultra sound scans and various biopsies and to cut a long story short it was confimed in August that it was invasive cancer- I was hoping for a lumectomy and radiotherapy, but after further tests and an MRI I was advised it would have to be a mastectomy.

I decided I wanted an immediate reconstruction (there are loads who are happy to stay flat - but I didn't want that). Reconstruction was discussed and as I was a 'D' cup I was informed they could do an immediate reconstruction using a tissue expander implant. I was informed there are 'things' that could go wrong - like infection - but if this happened the implant would have to be removed and a reconstruction done at a later date.

So on 24th Sept I had the right sided mastectomy with the tissue expander implant. So when I came round from the op I wasn't completely flat. I only needed an overnight stay in hospital and I was discharged with one drain.

2 weeks later I went to see the consultant for the histology results and at this appointment they added more saline into the implant - this is painless (as the new breast is completely numb - something else for you to bear in mind). There is a valve in the implant which they locate with a kind of magnet device - its a one way valve - so only stuff can go in and not come out (if that makes sense).

I have been going weekly getting the implant filled gradually - as I said its painless but a little uncomfortable as the skin is stretched a bit more at each top up.

I've now had my final top up and the new breast is at its right size ('D' cup). My breasts are completley differnet - my left breast is still droopy as before and my right breast is 'pert'.

I'm due to go back in Febraury when a date will be set to have this temporary implant exchanged with a new permenant silicone one.

Then I'll need the left breast seen to - I will be having an uplift and slight reduction if its felt its needed.

Then I'll be getting a new nipple sorted for my new right breast.

I'm 'pleased' with the outcome so far.

I hope this helps about the tissue expander reconstruction - i'm sure there will be others along soon to able to tell you how they got on with other types of reconstruction.

If you have any more questions please let me know.

Good Luck with your decision - keep us informed how you get on.

Sending love and hugs. xxx

[Lorraine H]

I’m so sorry to read about your situation.

I am 51 too. I was diagnosed with bc in July, 2 small tumours in my right breast.

I was guided towards having my left breast removed too due to increased risk factors - age, atypical hyperplasia. 

For me it was an instant decision to go for a double mastectomy with immediate reconstruction. I had my surgery in September and am healing well and feeling good. My breasts look very similar to before although they do feel a bit fake (firm, not so much physical sensation).

it is a very personal choice, I’m happy with what I chose.

Skin saving reconstruction does leave other reconstruction options open at a later date.

please feel free to ask me any further questions you may have xxxxx

[ElfMum]

Hello everybody I went for a routine mammogram and was called into hospital for further tests.  Told calcification in both breasts but so small the were not concerned but had biopsy’s ‘just in case’.  Went back almost two weeks ago to be told the right breast had dcis cancer and they wanted to do a further biopsy to see if I would need a lumpectomy or a mastectomy, he said they would do a lumpectomy on the left breast to remove the non cancerous calcium at the same time as the right.  So for ten days I clung to the hope that they originally said everything was small and it would be a lumpectomy both sides. Then two days ago returned for the face slapping news that I need a mastectomy it is now classed as invasive breast cancer as the biopsy they done the other end showed it had left the duct.  I have felt sick, tearful and sore everywhere from being so tense since then.  

Mainly because I have to make the decision of what sort of rebuild I want.

My first thought was I don’t want a foreign body implant.  But then I am so frightened and maybe even refused to use my own tissue as I have lymphoedema in my right leg and groin from cervical cancer treatment 19 years ago.  I am so angry I feel I have had my fair share already.

I have whittled it down to three options that would suit me best but at the moment I feel that I will go for the first one but if any of you have had the same experience please I would love to hear your views, I know it’s me that has to decided in the end.  If there was no choice it would be a bit easier.

1 right breast mastectomy and implant ( this will leave my right breast smaller as the implants are not big enough for me and my left breast will be sorted to match at a later date)

2 both breasts mastectomy and implants (at least they will match!) he offered me the chance to remove left breast too but I so no as a gut reaction for a start

3 taking tissue from my tummy, diep I think it’s called.  At least I get a free tummy tuck into the bargain! But it’s a far longer stay in hospital and possibly intensive care, two operation sites to deal with, plus I could be refused it anyway do to other helalth issues and need to go to another hospital to find out as mine does not do that operation.  I also don’t know if I am anywhere near brave enough to go for this one. 

So if anybody has made these choices I would like to hear a bit more.  Thank you for being here and thank you for reading, sorry if I have waffled and not used the correct words at times.

I am 51 live on my own and in a relationship with a very understanding man and supportive man 20 years older than me.  I have some marvellous friends who will help me every step of the way but I still feel I have to put a brave face on for them.