Hi all. Had mastectomy and lymph nodes removed last monday and am awaiting results on friday (although breastnurse now saying they may not be back for another week!!!) I know already that one lymph node had cancer in it and thats why they were all removed but im absolutely convinced that they all will have been affected. Secondary cancer scares me so much. I am 36 and my children are 3 and 6 and i can’t bare the thought of leaving them. I feel desperately sad and nothing anyone says seems to help. If one more person tells me to be positive i’ll shove their head down the toilet. Any advice on how to cope better? X
HI there
waiting for results after your op is possible one of the hardest things to cope with. Like you I was petrified about it having spread and I ended up with an MX after margins were unclear after my WLE. I also had nodal involvement which was picked up on a biopsy but again had to wait for results to know how many others - it was 3 out of 22. I had to wait 2 weeks for the results which was one of the hardest 2 weeks of my life - The only advice I can give is to try to distract your self as much as possible & if you find your mind straying into thoughts of your own mortality etc etc try to find something else to do. I was worst when on my own so maybe try to get some friends or family to be with you???. I am 44 with a 4 year old so totally understand the utter horror of all this and your fears that you may not be around for them. When I asked my BCN about the possibility of it having already spread at this stage she reassured me by saying that is only usually the case in often older women who have ignored they signs & their diagnosis has been done late. You didn’t say what size they estimate the lump to be.
One thing I can absolutely promise you hand on heart is that this will and does get easier. Once you have your results and move on to the next stage of treatment it feels much more like you have some semblance of control as you are actually DOING something about it. The main thing to focus on is that now you have had surgery the cancer is GONE!!!. as they said to me the treatment is to “mop up” any few stray cells and to lessen as they put it the theoretical statistical risk of it returning.
I am currently waiting to start chemo. which was delayed slightly as I had some wound healing issues. I’m scared but not nearly so scared as I was when I was at the stage you are at. unfortunately these fears & feelings are normal & you almost have to have them. I defy anyone with young children NOT to have them when diagnosed. I also know what you mean about people banging on about having a positive attitude. Yes it does help but some days it’s just not possible & I’ve wanted to hit some people - I didn’t though!!!
I don’t know if this helps but I hope it does. You are not alone & this forum has been one of the best things to help me through. everyone on here know what you are going through so I hope some others will be able to help you too.
Massive hugs - You WILL get through this I promise XXXXXXXXXXXXXX
Hi
It is definately the worst time waiting for results. Try not to dwell on it too much and get on with things…actually with young children you don’t have much choice but to carry on with everyday things anyway, even if you don’t feel like it, but at least it can help to take your mind off things.
I have a 9 and 11 year old and have gone through exactly the same feelings that you have and I don’t think a day went by when I didn’t cry. [I had mastectomy and lymph nodes removed after biopsy found one infected and found out a week later that all the others were clear]. Just think, as millykins has said, you have had the cancer removed now and you will deal with the next step in your treatment as we all are. Keep yourself busy and the time will pass and you can move on.
Hi to you both. I cant tell you how reassuring it is to hear someone else’s story(or should I say nightmare). I found it guite emotional reading your words of support. With regards to what you said, millykins, re estimated size. The information I know so far is I had a 13mm malignant mass plus a 11mm abnormal intra mammary lymph node and one abnormal axilla lymph node plus pre cancerous cells so make of that what you can. I am HER2 negative and hormone negative. They’ve said definately having chemo but dont know about radio yet. My BCN would not give me any reassurance re chances of it spreading and thats what has made me feel so negative. It feels like having this is a sentence for life. I really do appreciate you taking the time to read this. My thoughts are with you. X
I honestly think they are careful not to say anything too much till the full results are in - I was told that after my results meeting. I too am triple negative so chemo is standard as they can’t use the hormone therapy. re size that sounds fairly small - as I say mine were 2 lumps 3cm & 1cm plus the pre cancerous DCIS. I think that more agressive hormone negative cancer is more common in the younger age groups BUT the good thing about it (if that’s possible) is that this type tends to respond better to chemo. I am having 3 FEC then 3 TAX whic I suspect is what you will be offered too as such a similar diagnosis. apparently FEC is more likely to make you sick & TAX more likely to make you very fatigued & achey.
Whereabouts are you???
I hope you are feeling a bit better. You will def continue to have “moments” when you loose it over the young children but you’ll probably get better at recovering & then getting on with it. I am prone to tears when I talk about Sophie. I burst in to tears at nursery yesterday cos we picked up her “school” photo & am VERY upset that they want me to start chemo on the day of her nativity so am desperately trying to change the date cos that will do my head in.
BUT the feelings do pass.
hugs XXXXXXXXXXXXXXXXXXX
I haven’t had TN diagnosis confirmed yet i’m just assuming it is the case due to the bits I already know. When did they tell you that you were? was it at post surgery results? I am only just researching TN cause I previously knew nothing about it. I wrongly assumed it was a good thing to be negative in those areas but now I feel in a worse position. Information seems to suggest that we have more chance of further cancer and of it spreading. What have they said to you in terms of the future. As if it isnt bad enough having it, this seems to make it worse. Sorry to be so miserable!! I am in wakefield West Yorkshire near Leeds. XXXXX
Don’t ever apologise for being miserable - You are allowed to be whatever you want & are. Yes in all honesty triple negative - i.e eostrogen, progesterone & her2 negative isn’t as good as a hormone related type because they can’t give any treatment to help you other than the chemo & RADs. & yes it is often a grade 3 type of cancer which means the cells are more differentiated than normal cells & spread more quickly than say a grade 1 BUT - statistically speaking it changes your odds of survival by about 3-4 % plus the data is all based on 10-15 year old results which don’t take in to account the use of the TAX chemo which has only been used for primary breast cancer for the last 3 years.
When I got my diagnosis I got obsessed with my survival chances & checked out all the stats etc -0 I work in reasearch so stats are my thing. All it did was to make me feel frightened even though the odds are VERY much in favour of survival. - They are making more & more breakthroughs all the time which cannot be fed in to the data pool cos it is too early to know what effect they have.
It is just absolutely natural during the stage you are at to feel like you might not have a future & to become very scared & cry lots. It really really does get so much better once you have had your results, know what you are dealing with & then get your treatment plan. This time is just time you HAVE to get through in whatever way you can. People said to me take it one day at a time. this is something I struggle with but on some days it really is like that. the results will come through & it will be hard to hear but like I say they are very very positive about the future for most of us and all you can do is go along with it all & take the treatment offered. I met 3 young women last monday who had gonbe through Chemo & 1 was in her last week of Radio therapy & they were honest with me - It is HARD but all doable & you do come out the other side.
SO keep going, cry when you need to, scream too in a field if possible. I threw a chair accross the room on Sunday!!! - But I promise I’m not some nutter - just a normal woman who gets angry & frustrated at what this is doing to my life. an hour later I was out shopping with my husband like a “normal” person again. that’s just how it is.
Massive hugs to you . I am way down south but at least on here it doesn’t matter how far away you are.
XXXXXXXXXXXXXXXXXXXXXXXjo XXXXXXXXXXXXXXXXXXXXXX
When do you start chemo? They think it may be week before christmas or inbetween xmas and new year for me. How is your arm now? This lymph node removal is hard work. Much worse than the mastectomy itself I feel. Today-10 days on I have lots of numb areas, my arm feels like it doesnt belong to me. And above my scar feels swollen today. And the exercises-ow!!! when should it all feel normal again? My poor hubby and kids aren’t getting a look in today cause I can’t stop browsing this site. XXXX
Hi millykins
Confirmed today by BCN that i am TN and that this girl wont be getting results 2moro!!! Got to wait til next friday now. Boo!!! On a lighter note had mum round this morning to attempt to imac under bad armpit…was beginning to resemlance a hairy gorilla. Daren’t shave cause can’t feel a thing under there. Oh the joys of this journey we are all on.
Don’t know about you but schools are closed in our area so ive been blessed with the company of my 2 lovely bickering boys for the past two days. Fingers crossed for a big thaw tonight so business as usual 2moro. I should be so lucky!!
Take care. Deb. X
Hi Deb
Just home today from LGI Ward 75. My lump was 2.5cms. Awaiting results now and I think that is the worse part. I live in Morley and am thinking of visiting Haven in Leeds which I have been told is absolutely fantastic with loads of complementary therapies. Hope you are having a good day, I have loads of wobbles, usually in the most inappropriate places, but after coming on this site I always manage to feel better somehow!
Love Alison x
HI again - sorry for quiet period been hibernating without posting too much as had daughter home from nursery.
sorry you won’t be getting resukts til next week now. I was supposed to see BCN today but cancelled cos of the snow. had to perform DIY wound dressings but OH & I have done half decent job - we clean up like professionals with hand scrubbing & alcohol gel.
we may well be starting chemo at the same time - I still haven’t got final date but will prob be 15th or 17th - I’ve refused the 16th as it is my daughter’s nativity!!! - would break my heart if neither me or OH could go cos I was sitting getting filled with poison!!!
have given up on armpit & am going all french cos I used an electric razor & came out in a rash which has NEVER happened with wet shaving. may try immac but they said that can irritate - won’t need it soon cos hair will fall out anyway!!!
re feeling normal it may never but it may??? I am still numb completely 8 weeks on and my scar is tight but prob cos of all the swelling & wound issues I have had. can take 4-6 months to get to where it will most likely stay & they warn may stay numb forever???- I think you just get used to it though.
I generally post on a thread called starting my pink road of chemo on 15th. there’s a whole bunch of younger (I still include myself in that category!) women & they are all funny & fab - why not join in??? I am one of the first to be there & the last to start chemo GRRRRRR -
Hi Alison and Jo
Alison-Glad you home safe and sound. Waiting waiting waiting…drives me mad. Especially when snowed in and left alone with ones thoughts. Today is a good day. Had dressing removed today. Got fluid build up but they decided not to drain off thank goodness. Although looks like im growing another boob. Been shopping-first outing since coming home. Really took mind off the dreaded c word. Not heard of the haven. Am booked in for a look good feel better session at jimmies in feb. Wakefield hospice do therapy days too.
Jo- whats going on with your wound not healing? You sound to be having a few problems. DIY… how come? Definately no chemo on nativity days!!! Re other thread…yes i would love to join in if they will have me.
Love Deb. XX
Hi deb - just to expand on what I pu ton other thread - But don’t want to freak you out!!! - Mine swelled about 2 weeks after the surgery so they drained it several times - I was scared but as I said on other thread it doesn’t hurt at all cos you have no nerve endings where they did the surgery. it does look scary - BIG needle but if you look away & chat about the weather it’s doable!!! they got off about 450 ML of fluid each time but then I was due to go on the Monday & sat was sick (coincidentally) so we called NHS direct & they arranged appt with out of hours doc for anti sickness stuff cos I felt so rough. getting ready to go I took off my binder & was leaking blood. by time I got to surgery I was soaked!!! - pressure had built & found a weak spot. the doc put a stoma bag on which covers the opeining & allows the blood to go into a plastic bag thing. Have been wearing one for a week & a half & was due to remove it with the nurse on Fri but couldn’t get there cos of snow so called her & she talked me through what to do so we have been playing doctors & nurses (a clean version!) so far I am changing dressings night & morning but it does seem to be slowing down so am hoping it may have healed fully in a few days.
what I have found with all of this is that it is amazing what we human beings can deal with when we have to. I have just had a bad couple of days over it all & been very teary but more down to my period coming than anything so try not to read too much in to that. I just have a good cry & usually feel better. I am lucky to have such a wonderfully supportive OH who knows when I need a cuddle & when I need to be left alone to get over it by myself.
see you on the pink thread XXXXXXXXXXXXXXXX Jo XXXXXXXXXXXXXX