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Told to expect the worse....

23 REPLIES 23
Kess
Member

Re: Told to expect the worse....

once you know your start date for your chemo, you might want to join the relevant monthly thread in the "going through treatment" part of the forum. Its a good way to give and receive support from others at the same point in their treatment as you. Its good you now know where you are at least. Chemo isnt easy but its doable.

Seabreeze
Member

Re: Told to expect the worse....

Shoelover,
I met someone at a breast cancer support event recently who had tried the cold cap. She was about halfway through chemo, and still had a lot of hair. She said it was thinner on top however you wouldn't know when seeing her. She had cut her real hair shorter to a shoulder bob length and also has a v real looking slightly longer wig apparently more the length of how her hair was before. She said she'd had a lot of complements on how much her bob suits her. She didn't mention any negatives though confess conversation didn't really go that direction.
I narrowly escaped chemo, but before I knew this I had been thinking may as well cut hair v short and give to a children's wig charity. Now, if I was in that situation given the lady and her cold cap head of hair I think I'd do the same as her.
It might be worth you posting a new strand in the chemo section re this particular q since I'm sure loads of women would get back to you.
Hope that is of some help.

Melykins, um, your employer sounds far from considerate. It sounds like you have thought about it all re what is best for you at this time. I still just wondered on point of principle, even if it just meant you got paid gardening leave or similar.
Hope the wedding plans are a good distraction.

Seabreeze
Nikki49
Member

Re: Told to expect the worse....

Hi shoelover, I would think that the chemo they are talking about is Fec-t, if you search that on the Macmillan website it'll tell you everything you need to know. I had 3 fec and 3 t in 2013 and seems to be the most common combination, it's not easy but it's doable and at the end of the day I was prepared to chuck everything at this wicked disease to make sure it didn't/doesn't come back.
Take care x
melykins
Member

Re: Told to expect the worse....

Thanks seabreeze l just do not have the fight in me. My last 5 years have been bad. I just want to move on. Get married and hopefully cancer free for a long time. Prior to the bad year of 2014 my mother died in 2012 just say it was not expected as she was OK. Few months after her death same employer put me on a bereavement team . First Christmas without her and it was hard listening to people phoning about their loved ones who just died. Prior to this in 2010 l had a relationship that ended badly. Cut a long story short it was domestic abuse and it ended with him putting the bread knife to my face. Luckily he only cut my hand. So you can see l have no fight especially when l am leaving this job in March. I met a lovely man, a caring man whose love for me never changed when he knew about the cancer. All my energy is focussed on getting better and have a happy life. This job l am in now will just be a distant memory in the past.
13gerbera
Member

Re: Told to expect the worse....

Hi Shoelover, sorry your news wasn't great but it's good to know what treatment is planned. I'm sorry I can't help with your chemo question but hopefully someone will be along soon who will know more than me.

x

Sharon

shoelover22
Member

Re: Told to expect the worse....

Thanks for your kind words and advice and you're right I do feel so much better now got treatment plan and prognosis as was letting my imagination run wild!....Have finally got my results today; Grade 3, stage 2, invasive ductal , ER and PR+, HER2 negative. 2 lumps but small so surgeon said should be able to do lumpectomy. As much as I tried to get out of it will need chemo as some lymph involvement but surgeon not sure if also will need radiotherapy. They said (between themselves) I would need 6 months treatment of chemo - 3 of each as is standard (?) Just wondered if anyone had any idea what chemo meds they might be referring to? Also has anyone tried cold cap have heard good and bad reviews but think will give it a go. Any advice, feedback etc greatly appreciated.
Seabreeze
Member

Re: Told to expect the worse....

Hi Melykins,
Saw your post, really feel for you, it's appalling that your employer has treated you so. You are protected by legislation (cancer means you count as having a disability under equalities legislation and if your GP has provided sick notes your employer should have offered a meeting with occupational health to discuss how the company may flex to help you back.
While I totally understand you not wanting to fight your employer (the hr dept at my company has been pretty poor and laying down the law is knackering when you are recovering anyway) however I would suggest you strongly think about getting a solicitor to write a letter since one letter may freak them and makw them see they are not complying with legislation...with either the outcome that they continue your employment or give you some kind of discretionary payment to avoid risk of you taking it further and them looking rather non compliant.
I've had a few battles...reading 300 pages of the 2010 equalities act statutory guidance when you have radio fatigue and a stupidly low iron level was not the best but did help....not suggesting you do that but a stiff letter from a solicitor for a small sum...you would probably have little to lose and potentially a fair amount to gain.
Hope the wedding plans are going well, good to have something so positive happening.
My first day back at work tomorrow....will be strange going into an office where nearly everyone knows what happened to me (well, baseline info anyway).
Seabreeze x
melykins
Member

Re: Told to expect the worse....

Thanks Kess and Jets l am afraid so. If l only had the issue of work in my life then l might have fought it. However, l am leaving anyway so l want to focus on my wedding and future. I have worked full time for nearly 25 years for this employer and this is how they treat me. To tell you the truth if things go bad again l would not want to fight for the job, rather find another.
JETS
Member

Re: Told to expect the worse....

A very tough year for you melykins - I agree with k though - it's not right to sack someone when they are absent because of illness ... You need to get some advice - also I'm not sure if you tried flexible working or a phased return ? Your employer should consider this for you .....I'm very nervous about how I will be post treatment but my employer has alreadiy mentioned phased return as a possibility x I really hope that making the wedding plans brings back a bit of happiness - you are through the worst x hang in there sarah
Kess
Member

Re: Told to expect the worse....

Sorry you have had such a tough year. I dont think they can sick you for being off sick with cancer? you might want to call the helpline or Macmillan to check what your rights are, but that sounds very wrong to me....
melykins
Member

Re: Told to expect the worse....

I had my first ever mammogram July 2014, just thought routine thing to get now at 49 years old. A few days later l got a letter stating l had to get further tests at hospital and l burst into tears. I had another mammogram and was then called into the room, as l walked in l saw my mammograms on the light box. Something inside knew it was cancer. I got biopsies and then saw the MacMillan nurse. The results came back and l had grade 1 cancer in the right and grade 2 left but no nodes involved. I was scheduled for surgery 15 August. For me my World fell apart in Summer 2014, sale of my home fell through, got double breast cancer and my wedding and move had to be postponed until 2015. I also had fight to save my job as l had to move my leaving date as well. After surgery, radiotherapy and still battling with depression my doctor gave me another sick note but l got a call from my employer saying if you do not get back we will start procedures to sack you. This was 1 week before Christmas. So back at work still low but l got to focus on the wedding and a happier life. If it wasn't for family and fiance l would not want to live anymore. Sometimes you got to go through heartache to get to a better place in your life.
keepmumsane
Member

Re: Told to expect the worse....

Hi shoelover, I too got called in before my biopsy to be told it was cancer. My ultrasound sound technician had tears in her eyes when she told me it wasnt a cyst. It took them a couple of goes at the biopsy to find what they needed. I've had a masectomy a couple of weeks ago and my Pathology back just before christmas. Mine was 5cm, grade 3 but not in my nodes. As Im her2+ , which makes it aggressive, Im looking at chemo once my chest has healed. So far I have to say its do able.... messes with your routines and your emotions and pretty much everything, but in my experience the medical people are amazing. They're kind and they care. Even my rather gruff surgeon has a soft side. This site and forum is great to vent and make jokes and ask questions, we are all having good days and low ones. As everyone says waiting is horrible, once you start moving it gets easier to deal with. Hugs xxxx Sandie
Rodent
Member

Re: Told to expect the worse....

If they aren't happy to wait for egg freezing (and many cases aren't) you can have zolodex injections during chemo which put you in temporary menopause and should help. Many many people have thus!
Kess
Member

Re: Told to expect the worse....

once you know what you are facing you will be able to consider your options better (and you will have options). Chemo may make you infertile, but it doesnt always particularly if you are younger. Depending on how quickly they want to get started, you might have the option to freeze eggs. They should also be able to tell you how much difference statistically taking the chemo will make to your prognosis, so you can make an informed choice. You might want to give the helpline a ring too to talk things through.
Seabreeze
Member

Re: Told to expect the worse....

Shoelover
I think most of us go a bit google crazy either before or after diagnosis (or both). I'm a bit older and not had children so similar but slightly different re being a bit older and likelihood.
If a lump is cancer and if they were to recommend chemo, due to your age you would be given the opportunity to see specialist fertility doctors and be given info and options re egg freezing and other such means as a precautionary measure re chemo and possible impact on fertility.
Dependent upon the type of cancer they may recommend hormone therapy for 5 years (if type of cancer is oestrogen positive). Due to the type of medication one is not supposed to get pregnant while taking it. In such situations some consultants say take it for a min of 2 years when risks are highest re bc and then try for a child 2 months after ones stopped taking it. All depends on type of cancer.
So, you would have options if, and that's if, you were to need such treatment/s.
Seabreeze
shoelover22
Member

Re: Told to expect the worse....

Thanks for all your replies and support ladies really means a lot.
Just hoping that it is the one lump that is cancer (ideally none but v. unlikely) surgeon told me it is approx 2cm and others are only mms. By biggest concern is if the lump under my arm is also cancer as nurse told me if it is then I will need chemo which I really don't want. I know I shouldn't have but been googling side effects etc - although I'm 36 I don't have any children yet and I know chemo will likely make me infertile too. Just wondered if anyone been in similar position and/or decided against chemo? Sorry for all the Qs but just want to get as much info as possible before my next appt.
Seabreeze
Member

Re: Told to expect the worse....

Hi Shoelover,
Sorry to hear you may be joining our club. Regarding you question, with me they told me a provisional grade post results from initial biopsies. They then confirmed the stage after they had carried out tests on the removed lump and zone immediately around it and on any lymph nodes they may remove.
It's difficult when you don't know the picture...I tried meditation to calm myself. And just thinking that there was nothing I could do to change whatever outcome results were.
Try to spend time with people you are close to and talk about it if/when you feel you want or need to.
Seabreeze
ThePianist
Member

Re: Told to expect the worse....

Hi Shoelover. I was told at my initial meeting that they were pretty sure I had BC and then a week later they confirmed it and told me the stage. I have to tell you that the absolutely worst thing about this whole malarkey is the waiting. The nurses and surgeons are amazing and BC care has advanced so much in the last 10 years. I had a WLE and sentinel node biopsy. There are some really upsetting stories out there, but don't forget that not every case is as scary. I found my lump on 4th June, it was diagnosed on 11th, test results on 18th and operation on 30th June. Ten days later they said they were happy that the whole lump was removed, no vascular invasion and no lymph nodes affected. I had radiotherapy and will take tamoxifen for ten years! I never realised that this could be the case and had I known that at the beginning it may have made the waiting slightly easier. Whatever your results are the surgeons and doctors will deal with it. My doctor said to me today, please stop worrying about everything otherwise you'll forget to live. He's right. We are all in good hands and they will take care of us when we need it. Don't forget that many many people live with BC for a very long time, and many more get rid of it and it never comes back. Oh, and don't read statistics - THEY ARE NONSENSE. Wishing you a lovely Christmas! 

Kess
Member

Re: Told to expect the worse....

yes I was told the following week when I went back for biopsy results that it was grade 3. They had taken biopsies from my lymph nodes when I went for my tests, so confirmed cancer there at the same time. IBC is always stage 3 or 4 though, so the only question was if it had spread further. I had to wait a couple of weeks for further tests before I found that it hadnt,
Rodent
Member

Re: Told to expect the worse....

Am 33, was dx with bc in April with some nodes involved, lump was 6.5cm. 8 chemo sessions, a bilateral mastectomy (am 3rd generation to get it but oddly no gene mutation) and having radiotherapy starting next week. Am on tamoxifen and bith oncologist and surgeon are very pleased with their work on me.

So basically, it may seem so very awful, but once you have your treatment plan and can get your head round it, it will feel a bit more manageable. I've had the lot, and because we're young, they can throw everything at you knowing you can take it.

Good luck!!
JETS
Member

Re: Told to expect the worse....

Hi - just wanted to wish you well - it is a shock to be told you have cancer .... The many tests also seem to last a lifetime but if you get ur treatment plan in Jan u will start to move forward. I'm 46 and have 'met' many lovely lassies on here - my experience was more like ' we are checking for reassurance but ...' The. ' oh yes - you have cancer ... Masectomy books for jan' I hAve learnt to have great faith in the judgement of the medical team - especially the ultrasound expert, you are not alone in the waiting xxx best wishes sarah
shoelover22
Member

Re: Told to expect the worse....

Hi Kess, thanks for your reply. Sorry to hear what a tough year you've had but so pleased you're better now following treatment.
I've resigned myself to the fact the results will be BC - the surgeon said it definitely was and although not the best timing 3 days before Christmas in a weird way I'm glad I know and was not given false hope so just gonna throw myself in to preparing for Christmas.
Do you mind me asking if you were told what stage/grade your BC was at your follow up appointment or did you need further tests? Thanks again for your supportive message x
Kess
Member

Re: Told to expect the worse....

Hi Shoelover. I was also told when I went for the tests to expect bad news. They won't say that unless they are pretty sure, so although there is a small chance they could be wrong, I suspect sadly they won't be. I am older than you but not that much (was 41 in January when diagnosed). It has been a hard year with chemo followed by surgery followed by rads, but I am through it all and recovering well as far as I know. I had stage 3 grade 3 IBC. Its been a difficult year, but waiting to know was horrid. I really feel for you especially over Christmas. Try and put it as far back in your mind as you can and do some nice things.
shoelover22
Member

Told to expect the worse....

Just been for an ultrasound, mammogram and biopsies this morning following a GP referral after a dimple appeared on my breast. They found 4 lumps in total one larger than others and another which is under my arm. Both the ultrasound expert and breast surgeon said they are certain the large lump is cancer which I wasn't expecting to be told before I got biopsy results through.
Anyway go back for results on 2nd Jan and also need another biopsy on my other breast but they think it is just calcification - fingers crossed. Then back again on 5th jan for those results and treatment plan.
Breast care nurse told me if lump under arm is cancer than likely will need chemo but did say as younger woman - I'm 36, they might need to use several treatments if removal of lump/s alone is not enough.
Nurse was lovely but would just be good to hear from others out there who have gone through/ are going through treatment.