Before 4 Oct it was lumpectomy and Radiotherapy - now mastectomy and chemo - I can't cope

This is my first post.
I am in a terrible state. I was diagnosed on family screening because Mum and Aunt died. I’m 43. It’s invasive lobular cancer. I had wide local excision, was told I would probably only need radiotherapy and tamoxifen. I was still scared of recurrence but I could have done the treatment. The lumpectomy ended up looking more or less the same as the unaffected breast. I was so relieved.
Went back on 4th for results. My biggest fear was that the sentinel node would be positive. It’s negative but everything else is a disaster. The tumour was 3 cm instead of 2 cm. There were 4 other mini tumours in the margins - one 1mm, one 1.5 mm, two 2 mm. There was some LCIS too.
Now I’ve got to have a mastectomy and chemotherapy. I am on the edge. All the staff have been lovely to me and are giving me extra support and appointments.
I am devastated. I feel like I can’t face it but if I refuse I will die within 2 years, like my Mum.
I can give more details another time. I keep crying. I’m on the sick from work.
I’ll be mutilated and bald. I know if it is stupid but I keep freaking out about my hair. I can’t even have a permanent reconstruction, just a immediate delayed because I will have to have radiotherapy after chemo. The nipple’s going and there won’t be much, if any, sensation in the permanent reconstrction - they’ll use lassi dorsi muscle because I’m slim.
Everyone says your hair will grow back and you can have a wig. It is absolutely no consolation.
I know it’as not my leg or something or a burnt face but I can’t handle it.
The medical staff think I am gradually coming to terms but I’m not, not really.

Hi I want to live

Firstly welcome to the Breast Cancer Care forums. I’m sorry to read that you are having a such a tough time at the moment. I’m sure the users of this site will be along to support you soon.

In the meantime it might help to talk through how you are feeling with a member of our helpline staff. Here you can share your worries and concerns with someone who will offer you a listening ear as well as emotional support and practical information. The free phone number is 0808 800 600 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

Best wishes Sam, BCC Facilitator

Hi. It is understandable that you are feeling this way. To think you have one thing and then to find out you have other things going on too, it can be hard to accept.

I didn’t have invasive cancer, but I did have DCIS which was high grade and spread all over my breast and into the nipple. I had to have 3 biopsies before I believed that I really did need to have a mastectomy (I’m sure they were fed up with me!!). However, I did end up with a mastectomy and an immediate DIEP reconstruction in April of this year. To be honest with you, I felt mutilated - a bit like Frankenstein’s creation I keep saying. Fortunately, I didn’t have to have chemotherapy, so I cannot empathise with you on that, but I can tell you that a mastectomy is not the end of the world. I lost my nipple too. Initially, my breast felt as though I was carrying around a weight strapped to my chest, but 6 months down the line, it feels almost natural - definitely part of my body now anyway. With clothes on, it looks and moves exactly like my normal breast. Without clothes on, it’s not quite as bad as I thought it would be. It’s more round and pert than my original breast, but it’s not hideous. I have a very small round scar where they have removed the nipple (about 1cm bigger than the size of the original areola area all around). I am on the waiting list for a new nipple, but I’m not even sure that I will be bothered with that when my appointment comes through. I did lose the sensation in my breast, although I have noticed just over the last couple of weeks that I do have some ‘tickling’ in the centre of my breast when I massage cream into it.

You really will get through this. It is just a massive thing to take in when you are first diagnosed. I hope that some of the things that I have said will be of some help to you and I wish you all the luck with your journey.

Mandy xx

Dear IWTL
I don’t come onto this site as often as I used to, but I have just seen your post and wanted to say that I can feel for you - this is a really difficult time when you get new results that aren’t what you have been hoping for and maybe expecting, and I’m sure lots of other people will be along soon who have been through some of the same things as you have. Honestly it will get better as you adjust to the shock of needing more treatment - I think one of the hardest things for me at a similar stage was that I could only see things getting worse and worse, but they didn’t, and that is true for so many people on here.
I was diagnosed with invasive ductal cancer in Feb. 2011 and told from the start I would need a mastectomy - combination of small breast and 2 lumps. Got my head round that but the hard part was going back for results to find that total area of IDC and DCIS was nearly 9cm, plus 1 positive lymph node, so I needed lymph clearance, chemo, rads and tamoxifen. It was a real shock, but had lots of support from family and friends and (mostly!) great team at the hospital, and I think you just get through the treatment bit by bit. Joining one of the threads here for people starting chemo at the same time was a big help, felt like we pulled each other through and it was a great place where you could safely say what you were really feeling. I went back to work (phased return) a year ago and am doing fine, and like many people on here say, have learnt to really make the most of every day (which sounds solemn but for me means being more confident about doing things I like doing and being able to say No more often!)
I hope things get a bit easier for you and I will check back in see how it’s going. With a very big hug, Jude

HEy I want to live,
so sorry to hear where you are at. I just wanted to say that I was at my worst when is was told i had to go from WLE to Mx - but you know what, its not neccessarily a bad thing for you to be in bits now…i think i held it all in and then fell apart during chemo - so my experience tells me its good to use all the support on offer, tell em how it feels , but at the end of the day you WILL cope because you want to live and sadly, horribly, our best chance of life is through the treatment as described, so we are in a no win situation and we grit our teeth and get through it one way or another. I got through it with lots of help, you can do it.
very best to you,
nicola

Hi
Sorry to hear that you have had to join our merry band.
I am 47 and had invasive lobular bc with affected nodes, Due to the fact that the lump was big and by breasts were small, I went straihgt for MX with immediate recon last October. While I have lost a nipple and have a scar, it actually doesn’t look too bad, even when naked. It is perter than the other side. When dressed, it is completely un-noticeable. Your BCN may be able to show you photos of ladies who have had surgery (with and without recon), so you can be forewarned before your op.
I had chemo too. While I wouldn’t describe it as enjoyable, it is do-able. You will get through it. If losing your hair is a big thing, have the nurses talked about the cold-cap? If your hospital offers it, it may be worth a go. I used it and kept quite alot of my hair. In fact, I only realised how much I lost when the rest started growing back. If you haven’t heard of it, the cold-cap is like a swimming cap that has a cold liquid pumped through it. The idea is that it reduces the blood-flow to your hair folicles and means that they take up less of the chemo. It does mean that chemo takes longer (as you need to be chilled for an hour or so before and an hour or so after) and isn’t very comfy. It isn’t guaranteed to work, but for some it does. I got my NHS wig before my first chemo and it is still safely stowed in it’s box.
Good luck.

Hello ‘I want to live’…
Can really identify with you. For me, the news I had to have chemo was worse than the cancer diagnosis. I was terrified of going from a fit and healthy person to a sick person. However, it really hasn’t been as bad as I feared. I’m about to have chemo 3 of 6 and am completely bald at the moment (have some lashes and brows) but still manage to look reasonable out and about and have ways of wearing stuff that doesn’t shriek ‘cancer’. And it will grow back. With the chemo, I’ve had the odd bad day, but really no worse than getting a seasonal bug or having drunk too much that puts you out of sorts for a while, most the time I’m as fine as usual.

I’ve spent a bit more time with my appearance than I usually would as I think what you see in the mirror often feeds back into how you feel about yourself. I’d really urge you to do stuff that helps you feel as good as you can about the way you look. Either by yourself, or go to a workshop if there is one near you. Also, don’t know what your activity levels are at the moment but if you can do a bit of exercise I think that really helps too, not only with the energy levels but also with the body image and also keeping the side effects from chemo down.
I’ve put together a couple of Pinterest boards to help keep me positive through chemo. And maybe they can inspire others too.

This may sound a bit mean, but I think there are things that can make a person a lot more unattractive than a mastectomy such as being horribly obese, or just being not a very nice person. Hip-to-waist ratio is more important imho than cleavage in the beauty stakes. As is personality. There are some very beautiful people that have gone through the surgery and treatment and come out the other side. There are also some very ugly ones that haven’t had to have surgery or treatment!

Hi there! I’m 37. I got diagnosed about 3 weeks ago and will get all my test results tomorrow and get the full horror story then. But my doc gave me the worst possible option - so anything better than that will be a bonus. I have IDC grade 1/2 but apart from that I’m in the dark… Maybe we can support each other through this as the chemo part ( which I will prob need) is scaring the you know what outta me… I just have visions of me fat bald lethargic and not the person I am. I just dont see a way back, but I’m just going to have to… I got up this morning, went for a run and am now heading up for my MRI. I also looked up and bought some of those genie bras online. My friend said all new events bring a new reality ( although wanted to shout at her!) she is right. We will all hopefully get through this - I’ve shed my tears today- time to face the world…maybe it won’t be so bad like the other experiences here. We’ve just got to hope…
N xxx

Hi IWTL
where you are now is where I was this time last year…my dx was a car crash syndrome…finding my lump was bad enough but what followed was a nightmare…“it is treatable”…“just WLE and rads”…“you can do this”…“it’s doable”…“YOU WON’T LOSE YOUR HAIR”…when in fact…I had to have Mx due to size of my breast to the ratio of the lump…I was told chemo as nodes were involved…I was on the floor at that point…take me now…NOT!!!..In fact I coped with it all better by taking one day at a time…I had to get my head around chemo as it was my best chance of prevention…I’m HER-…no herceptin for me then…I was grade 3 IDC…2 sentinel nodes had mets in them…11 nodes taken so less than 4…no rads…I’m nearly 54 bit older than you and I don’t know anything about Lobular cancer but my best advice is to be kind to yourself…I got diazipan off the doctor …never had anything like that before but in the short term it helped me to cope…was prescribed citalipram but only took those for a short while between dx and my op…I focused on the op then on the results then on treatment…one stage at a time…I had my lovely choccie coloured bob cut into a short “do” and then before treatment started I picked a wig as close to my original style as poss…and sent off to a website called ANNABANDANA…they have a lovely range of chemo headwear at really reasonable prices…all I could think about was…I am going to be bald…but in the end I realised a bald head for a short time is better than the alternative which is not a choice…once my hair started to come out my lovely hairdresser came to my home and shaved it off…that was awful for me but…my elder daughter had a mantra for me…GIVING UP IS NOT AN ALTERNATIVE MOTHER!!!..I am not saying the treatment is easy or a walk in the park but it is doable…and now I’m at the end I’m amazed that it has gone so quickly…I’m glad I had the chemo and can look my family in the eye and say I’ve chucked every bit of ammo I can get my hands on at it and I’ll keep taking tamoxifen for as long as I’m told to…my priorities have shifted massively and for me life is precious…my wig was so successful that no-one knew about my BC until I whipped it off in july this year when it was too hot to wear it…I wasn’t one for sporting a bald head…I’m not as brave as some ladies on these threads so I had a few cotton skull cap hats to match my clothes and bright headwear for the summer…hoping my tome gives you some inspiration…Maggie

Hi IWTL…
So sorry to hear about your Mum & Aunt. x
Im not on this thread usually but saw your post in the updates & just had to comment.
I am 40 (was my bday yesterday) & was diagnosed Stage 3 BC on 13th July. I was told mastectomy then chemo then radio. However after 20 of my lymph nodes came back clear, i was told chemo may not be necessary… Phew!! However, 2 weeks later i was told yes, chemo & radiotherapy still required ‘as insurance’. I was 39, had just lost my job, just started a new relationship & i had to deal with being mutilated, bald & being ‘made’ poorly by chemo.!!
HOWEVER, its amazing how quickly you come to terms with everything. The mastectomy was pretty straightforward & i started my FEC chemo a week ago. Its not pleasant but as everyone on our thread keeps saying ‘its do-able’. At the end of the day everything they are doing for you is for the best & i always said they could throw eouverything at me cos im far too bloody stubborn to let this thing beat me.
Our thread is ‘Starting chemo in October’ and we call ourselves the Pumpkins. We are all in the same boat & the help, tips & support is invaluable…
I understand it is a shock & you are feeling very angry with how things are turning out but believe me, you will learn to accept it & start to fight with every ounce of strength you possess…
Dont feel guilty about being angry, or upset, or sad, or pissed off… its normal… I hope everything goes ok for you hun & please join our thread if u need to talk or offload… xxx

Hi,
I had a very similar situation, I was diagnosed on the 10th of september with IDC,it was going to be a WLE and rads, then on 12th of september it change there was also some LCIS like a scatter gum effect around the IDC so it was to be a masectomy and rads, with an MRI scan added just to check on size, mammogram stated 2.6cm and ultrasound 3.3cm, 19th september we found out it was HER2+ so this added chemotherapy. I could n’t have immediate reconstruction due to treatment i was going to have to go through afterwards.
I had my MRI scan on the 1st of october, my operation was the 4th of october, i also had another meeting with the surgeon on the 3rd of october where I was told that my lump was 3cm and I could have a intermediate reconstruction in the form of a tissue expander.
I am now 2 weeks post op and received the results of my biopsy yesterday. I have no node involvment and all cancer has been removed (actual siz 2.8cm)so that was a big yipee from me and my husband (who has been an absolute rock), but i will have to have chemo (6 cycles) and herceptin minimum but no rads.
i have to say after getting my head around the intial idea i have cancer, it’s been a scarey jounery but so do able. In effect I no longer have cancer and the follow on treatment is to give me the best chance in life. My chest is not pretty but when dressed you would have no idea i have had an op and i am still wearing my original underwear thanks to the tissue expander.
My next appointment is with the oncologist on the 31st of october to discuss the chemo and heceptin, i intend to give the cold cap a try to try to save my hair but I look at it this way loosing my breast and temporary losing my hair is a small price to pay for a healthy future. i see it as loosing cancer, the rest i can do something about over time. I hope some of this has helped you and I wish you well

Hi IWTL I know you are in a really bad place but things will get better. I was dx in 2004 and down for mx but with immediate recon , no Rads and no chemo.

I came round in recovery to be told no recon done as node positive so I had had full clearance too and also nodule of cancer on skin . So I was left with a mx I wasn’t prepared for (I was size 34F) and down for Rads and Chemo. I was devastated, I did crying shouting moaning etc bu eventuallyt managed to drag myself out of the black hole I felt I had been shoved into.
I lost my hair which had been my crowning glory but bought two totally different fabulous wigs and chopped and changed depending on my mood. I was lucky to be able to work between chemos and also through most of the Rads and went on to have a TRAM recon and reduction on the other side.

It all seems like a bad dream now 8 yrs on and I am sure you will get there too. You will find masses of support here and you will eventually feel better.
What you are feeling now is perfectly normal but it will get better and I wish you the best ofluck with it all

Hi IWTL

I’m sorry to hear about your mam and auntie and now your diagnosis and treatment. It must really make it harder to cope with and I really feel for you for the way you’re feeling.

I started with everything very positive and had a WLE but because the first thing I found was a swollen lymph node which was shown to have cancer in at biopsy I knew I was having an axiallary clearance. The op went well and I worked hard whilst waiting for the results to get my arm funcitioning again. It was pretty devastating to find that the pathology results were not good and I had IDC, some DCIS, satellite tumours, 5 affected nodes with one with extra nodal extension and so a month after my WLE I had to have a mx - my absolute nightmare. I couldn’t have an immediate reconstruction because I needed chemo and rads. I’ve been referred for a recon but am waiting to hear back from the hospital. I understand your feelings of mutilation - that was why my lovely GP really didn’t want me to have a mx unless absolutely necessary. And I understand your feelings about losing your nipple - I asked the nurse if I really had to lose it but of course I did.

Some people don’t seem to mind the mx but personally I hate it with a passion. Like you, people think I’ve come to terms with it but they don’t know my true feelings. As others have said, the chemo is doable and it is amazing how it seems like a long time, particularly with the lack of sleep, but before you know it you’ll be all done. I had some really good days on it when I could go for a 2 1/2 mile walk, or even once a 10 mile bike ride and do a bit of gardening.

I coped pretty well with losing my hair and would take my hat off (I really didn’t suit the wigs) when in the office at work. Everyone was very supportive - they tend to say, “Oh, you really suit it.” I know they were lying to save my feelings but it was nice of them. My hair is now about an inch long and I’ve had it trimmed once so far. I thought it was going to be grey at first but the colour has gradually come back.

For me, I fell more to bits after treatment but I think that’s partly because I’m triple negative and don’t have any backup now. Trouble is, people expect you to fall to bits at diagnosis and treatment and really can’t understand if you feel down post treatment so I try my best to keep it to myself. Perhaps by getting a lot of your anxst (not sure how you spell that - perhaps the chemo brain mush again but hopefully you know what I mean) expressed now might mean you’ll not struggle so much at the end of it.

While going through chemo I had a chart bluetacked to the wall so I could put a big tick over each one to see how far I’d got. Just keep focussing on getting to that end goal and that if there are any cancer cells remaining the chemo will be killing them off and the rads are then for good measure.

Keep talking to people on the Forum. We can empathise with you and offer support and advice as and when needed.

Take care. Will be thinking of you.
Flori
x

Thank you to everyone who has tried to help and reassure me.
I am so sorry but I still can’t do this. But I am scared of dying too. I am cracking up most of the time.
Even the people closest to me who are desperately trying to help are losing patience, because they are at the end of their tether at the way I am behaving.
I got a phone call today from the hospital saying they can fit me in for the operation on 9 November. I literally, literally screamed. My poor elderly father of 79 who was visiting had to finish the call. Then a few minutes later the breast nurse rang. She thought I was coming to terms. but I’m not. She is so nice and sympathethic and going beyond the call of duty but nothing works. Yesterday she more or less said that the surgeons won’t operate when I’m in this state.
They said they would pencil in the 9th and I have to see the surgeon next Thursday, 25 Oct, which I was doing anyway. They will try and arrange an oncologist the week after for a second opinion. But I don’t think it is a second opinion at all because the whole team have made their minds up.
It’s the mastectomy and the hair loss. They can’t do a proper reconstruction because they think they will do radiotherapy after chemo.
It’s a tissue expander. They will pump it up. Sounds vile. There will be no nipple and areola. They cut out the lumpectomy scar then put a big mastectomy scar. Then they will put a big flap of skin that won’t match when the do the final reconstruction.
I knew it was coming but now it is only 3 weeks till they chop off my breast.
I suppose they won’t let me have fat enriched stem cells that might actually have some feeling left. Don’t know if they are only for lumpetomies anyway or if you can have it for mastectomies. I’ve been told it will be a dorsi flap.
I suppose I’m too slim anyway.
I’m distressed because it will look disgusting and there will be no romantic feelings in it if my boyfriend could bear to touch it.
If one day I could have a soft breast with feelings maybe I could accept a mastectomy eventually, after years have passed.
My mum died in just over 2 years. That’s why I’m scared to refuse.
People think I’m whinging, and I know I am. Sorry.

Darling you are NOT whinging - you are scared shi*less and you are absolutely entitled to that. All of this has come at a vulnerable time for you, so of course you are all over the place.
The positives - and yes there are some - you are getting the best possible treatment, and it is designed specifically for you and your cancer, not just a ‘recipe’ that’s applied to everyone with BC. You have found this community and we all know and understand in some way what you are experiencing - the BC experience is different for everyone. It’s a bit like a bereavement, and we all have to deal with it in our own way.
It may help you to get a book called Boudicca Within - it’s photos of ladies who have had recon, and they are naked and proud. It was devised by a breast plastic surgeon and she got her ladies to pose naked to show us what the results of recon after mastectomy look like. It’s wonderful, ladies of all ages, all types of recon, some only a few months after their ops. Your clinic may well have a copy to lend you, otherwise try Amazon. One lady and her partner decided to have a wonderful flower and leaf tattoo added to her recon. and she looks gorgeous. They are a biker black leather couple!! It is some time in the future for you, but it could give you something to aim for.
The downside -yes, it’s a long haul and you can get lots of support here, and the people in your life who are finding it hard to cope are either desperately concerned and feel helpless cos they don’t know what to do to help OR are not worth bothering with - I’m sure it’s the first not the second. Don’t forget your breast nurse will answer any and all questions, and will listen to your rants and THERE IS NO SUCH THING AS A STUPID QUESTION OR STUPID FEELING.
The boyfriend - or OH (other half) as we call them here - will also be distraught, andin time he will get his head round the notion that although your body has changed the essential you is still there. Refined and altered you may be, but you are still YOU and he will love that just as much as he loves the ‘now’ you. There is a thread for OHs/partners and he may find he can join in there for some support - the chaps and women there can have a real rant adnd they do support each other.
The final thought - you have to deal with all of this is YOUR way and the rest of the world has to respect that.
All the very best darling
grumpy
DX March 2010, now NED, waiting for levelling up surgery, and living life to the full (there have been a few blips but I’ve handled it)

I went to the GP today and got some more tranquillisers. I’m only going to try and taken then before bedtime.
I sobbed my heart out in the consultation. He was very sorry and supportive. He signed me off for 2 months. I know I am wasting time/money when I only have 6 months full pay and 6 months half pay but I was advised to stay away by work.
The GP said I might feel better when I can accept things instead of fighting them. I know it’s true but…
My Dad said he was pleased to see me seeming calmer. But that was just a front because I don’t want to upset him.
I blame my workplace. I should have had a mammogram Nov or Dec last year but they were being so horrible to me I was so upset I did not book it. Then things sortyed out just before Xmas. I tried to book a mammogram in Jan 2012 but was told the van had gone. I had to go to another town (I don’t drive) or wait till July 2012. I thought it was safe to wait but it wasn’t. The lump would have been smaller, don’t know if it would have been multifocal. I could have had a successful wide local excision and no chemo.
I blame this work problem and a few people for me losing my breast and my hair. I think it is their fault. I will never, ever forgive them. One of them is retiring this Christmas and I might not even live to retirement. Is my suffering their fault?
WILL I DIE IF I REFUSE MASTECTOMY AND CHEMO? I AM SCARED I WILL DIE FOR VANITY. I’M FRIGHTENED OF THE TREATMENT. I WANT TO RUN AWAY.
Do I have to have my breast removed?
I have a pre-op on 5 Nov,

HI IWTL,
I do so feel for you. Of course you are angry and scared it wouldn’t be normal not to be. Can I suggest that maybe you need to talk to someone. Maybe on the helpline here who can put you in touch with a buddy who has gone through a similar situation to yourself and can go through all the feelings with you? I think you need someone to totally listen to you and understand your fears. I’ve been through 8 chemos and 19 rads and it honestly isn’t that bad but it’s easy to say that when I’ve fnished and you’ve got to begin. I so hope you feel a little better soon. Hugs xx
Love
KQ

Hi IWTL
During the stage where I had decisions to make, my BCN offered to put me in touch with other people in the area who had been through the same thing. I met up with one girl who had had the LD flap reconstruction and she even offered to let me see and feel her reconstructed breast. I wonder if there is something like that available in your area too? I found it extremely helpful.
I was also offered counseling at one stage during my treatment - you are not unique in your fears.
I know I said this before, but losing your breast is not the end of the world. My reconstructed breast is soft and, from my husband’s point of view, feels exactly like my good breast. At the end of the day, it’s perhaps a small price to pay for your life :slight_smile:
Try to be strong and keep smiling.
Mandy x

Angry and scared are very normal reactions. I’m over 4 years from dx, and like you, was told that I wouldn’t need chemo. But I did and I was scared stiff.
I was too scared to admit how scared I was (if that makes sense) and kept it all bottled up. I remember sitting in the chair waiting for my 1st chemo and thinking ‘I just want to run out of here’. I then told myself ‘not to be soft’, and if young kids were having this treatment I could ‘put up with it’ and I did.
The treatment wasn’t pleasant, but I/we had some fun moments. Trying on wigs was a laugh, and I tried to make fun of some very embarassing moments. I got through it by just putting my head down and thinking’I’ve got to get through this for a few months’. I marked the chemos off on the calendar and counted down until the end.
Here I am nearly 4 years from finishing chemo and life is great again.
It’s a small price to pay. Just batten down the hatches and it will soon be over. (I am not minimising how you feel, I remember it too well - it’s a very scary time).

As much as I understand the panic and fear you are feeling - I have been there very recently - I am going to fly in the face of the understanding response and just say:

THIS IS REALLY HAPPENING

I think you need to say that to yourself until you believe it. You are on this train whether you like it or not and fighting everything is only going to make it more traumatic. We all have our “stop the world, I want to get off” moments but take a look at your screen name and I think you have ypur answer about whether running away is really an option.

You absolutely CAN do this - but you have got to believe that too. Be angry at whoever and whatever you want to - but be determined to do what is best for your health in equal measure. You feel your work has played a part in your current situation? Well don’t let your anger towards them distract you from your treatment now.

Please don’t think I am being mean - but I found that accepting my situation has helped me move on from the uncontrolable crying etc… and it took my other half to give me a kick up the butt for me to get there.