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confused and scared

32 REPLIES 32
Jobey68
Member

Re: confused and scared

I love how we can all hang on to our sense of humour amongst all the madness going on! 😉
Weeannie1
Member

Re: confused and scared

Not a problem to pm you Sheena, just not sure how to do it!! I'm not the most social media savvy person! Will find out how to do it and will easily answer any questions you have about chemo. Ann x
missmore
Member

Re: confused and scared

Yes Jill, I haven't been through menopause as far as I am aware, occasional periods but no other symptoms at all and bcn said to me on phone yesterday that because I have just turned 53 it's young to have invasive bc
missmore
Member

Re: confused and scared

Lisa, thank you xx
missmore
Member

Re: confused and scared

Ann, thanks, I guess I will have to wait and see what oncologist has to say on Tuesday. Not wanting to alarm anyone would you be able to send me a pm to discuss chemo? But please don't if it's upsetting
sheena x
Jill1998
Community Champion

Re: confused and scared

How dare you stop me from torturing myself!
Jobey68
Member

Re: confused and scared

Don't you just hate people like me lol! 😉
Jill1998
Community Champion

Re: confused and scared

No ,I get your point totally,you sussed me out!
Jobey68
Member

Re: confused and scared

Jill I'm sorry if that came across wrong but I know I drove myself mad trying to pre empt it all and you just can't do it and stay sane! Xx
Jill1998
Community Champion

Re: confused and scared

Message received Jo !I will stop trying to second guess the outcome...
Jobey68
Member

Re: confused and scared

Jill I was 46 when diagnosed in March, had a birthday in the middle of it all so 47 now! I didn't have chemo as my size and type of cancer wouldn't have had any benefit from it, mine was grade 1 , ER + 8/8 and HER2 -
Will be on Tamoxifen for 10 years which is due to my age as ladies 20 years older than me are being given the option as their oestrogen levels would have fallen, I'm still pre menopause, treatment depends on lots of factors and I've learned along the way that non of it can be second guessed xx
Jill1998
Community Champion

Re: confused and scared

Can I ask is the age factor because you are pre menopause?Awaiting my results next week I am 51.
Weeannie1
Member

Re: confused and scared

Hi Sheena,

I was in exactly the same position as you in November 2013. I was told that my lump was 1.5 cm on MRI, so that I would have a WLE followed by rads and 5-10 years of tamoxifen. However, when they removed my cancer it was actually 3.7cm. My BCN and surgeon still said rads and tamoxifen, but at the MDT meeting, the oncologist said that he'd crunched my numbers and had calculated that I would be border line for chemo. He insisted on seeing me and explained that because of my age (50 at diagnosis) and the size of the tumour that he would recommend chemo. It was left to me to decide and I chose to go with his advice. It's not easy to go through (although it wasn't as bad as I expected), but I do feel that I've given myself the best chance of staving off reoccurrence by undergoing chemo. By the way, my cancer was lobular, and quite often this type of cancer is larger on removal than on scan.

Not sure if his info is of any use to you, but I wish you all the best with your future treatment. Ann x x
MadAnge
Member

Re: confused and scared

Hi Sheena. I don't know what treatments I will be having following surgery but what I do know is even though it's a scary time there are ladies on the site who have been through similar situations and they can provide u with support and advice. Big hugs xxx
Lisac1
Member

Re: confused and scared

Hi sheena

I was informed that I would need chemo to shrink my lump before surgery 4 weeks ago, my whole world crumbled at my feet I was totally devastated. Have to say tho this forum has been an absolute godsend to me. I'm still struggling with the hair loss part but I'm doing all I can to keep it im 39 years old who did have long blonde hair, had it cut to just past my shoulders before stating chemo . Had my first session of chemo yesterday wasn't that bad. Used the cold cap which wasn't very pleasant for the 10-15mins but soon get used to it. Was wrapped up warn and still needs three blankets but got through it. The advice and inspiration I've had from this forum alone is invaluable. Good luck xx
missmore
Member

Re: confused and scared

Good morning ladies

just reading your posts, how very moving and I wish you all the best for treatments ongoing

I had a lumpectomy at end of may and was prepared for rads and tamoxifen when healing started but I now have to consider chemotherapy as surgeon is recommending it due to size of the tumour and my age, 53. I have an appointment on Tuesday with oncologist and I am dreading it! 

Any advice would be welcome

sheena x

MadAnge
Member

Re: confused and scared

Thanks Tracey. I originally found my first one just under 2 cm and after I was diagnosed with that as a stage 3 they said there was another they wanted to look at hence the fact they found number 2 grade 2 and 9mm. At least they have found them. Thank you for your advice xx Big hugs xx
Tra16
Member

Re: confused and scared

I found one lump of 8mm which was diagnosed with a biopsy as being cancerous and my hospital policy is to do an MRI, CT and bone scan. They found another 2mm lump and offered me a guided biopsy in London to see if it was cancerous. I decided not to go to London as I just wanted the cancer out so I just asked for thd masectomy . As it turned out the 2mm lump was pre cancerous so would have been same outcome. They said I would then have chemo and radiotherapy, but they didn't go into too much detail till after the masectomy. I think it's because it's information overload.

I've been fortunate . I was up out of bed two hours after masectomy and didn't find it too painful. I'm having reconstruction after treatment. I had my third lot of chemo Monday and again not too bad - like early pregnancy - nausea and tiredness. Although I know chemo affects everyone differently and you will only know once you've had it.

I did find doing my exercises after masectomy really helped me heal. As for chemo - they give you loads of stuff to counteract side effects and the best advice I was given was drink loads of fluids.

For me I try to take a day at a time and book in fun things to in between chemo so it's not all about the treatment.

All I can say is for me once I had masectomy I felt relief that it was out of my body.

Wishing you all the best. The waiting and unknown is defo the worst part

Tracey
X
MadAnge
Member

Re: confused and scared

Tra16 sorry to be nosey but did u have a mastectomy because your cancer was in multiple places or because you chose too. I am due to have a mastectomy because I have multiple masses. They have not discussed what will happen after surgery. Did u get told the next stages if your treatment after surgery?? Thank you in advance for your help. May help me get my head round this 🙂 xxx
Tra16
Member

Re: confused and scared

I can honestly say pre treatment is the scariest time. I was more worried about the hair loss than the masectomy. I had masectomy on 26 march and was lucky to bounce back quickly . I've had my third round of chemo yest and all I can say is drink plenty of fluids as it really helps all the side effects - I aim for 3-4 litres a day. I made decision to shave hair a week after first chemo and did feel
Emotional but my wig looks so good only ppl that know what I have know it is a wig. Some of my hair has come out but not all of it yet. I defo think it's easier once you are physically having the treatment . Good luck ladies x
wiffle
Member

Re: confused and scared

Hi hope you are ok
wiffle
Member

Re: confused and scared

Thanks I hope it continues to go well xx
wiffle
Member

Re: confused and scared

Hi I haven't been on site as have just moved into a wreck of a house- found out about the cancer a week after moving in so its been full steam ahead to get it done faster. I have had good days but feel shattered. My right breast feels sorer now than it did after biopsy a couple of weeks ago. Breast nurse too busy to chat so end up emailing her and won't see her until 2 days before surgery so can't really ask questions. Story keeps changing as first lumpectomy then radiotherapy now it's op , 18 weeks of chemo then radiotherapy . Really confused. Trying to be brave but dread each time I go in as it seems to get worse. I still don't know results of further tests on biopsy which is a pain. Don't want to lose my hair as my kids will be upset .....and me of course.
Jennifed
Member

Re: confused and scared

The waiting is excruciating isn't it? Your mind runs away with you to nowhere very nice. Hope the chemo starts soon. I'm sending you positive thoughts and energy for some peace and rest. X
Flamenco
Member

Re: confused and scared

Just to maybe help you feel more at ease, I'm on my second round of chemo now. I had a Grade 3 lump and a couple of extra small blobs which were found later after the MRI scan in the same side. Started chemo on the highest dosage of chemo FEC-T which include the hairloss drugs. I was preparing myself for the hairloss before I started and I think that really helped when it happened (on the second week after round 1 of chemo). I had quite long hair, so first had it cut to shoulder-length before it started to go and then 2 weeks later when it was coming out, I had to cut it really short. I got a wig which I was really pleased with as it was very close to my own hair and I also have bandannas for wearing around the home. Once it started to come out, it all happened quite quickly and within a few days I was wearing the wig to work and taking my daughter to school. Those who knew it was a wig thought it looked very realistic and those who didn't said what a great new hairdo I had. So all in all, I've had a very positive experience, but that's not to say it wasn't quite daunting at first! And now as more and more people know about my diagnosis, I'm beginning to realise that everyone will get used to it, whatever I feel like wearing. The advantage of the wig is that you can blend in very normally with people you don't know and no questions are asked, but then I do live in Brighton where anything goes! And as for the chemo, having got through the first round with relatively low-level side effects, I'm much less anxious about that too. I think the main thing is to sleep when you can/need to (day or night), keep eating lots of fruit & veg to help with constipation (no bananas if constipated though!) and get what exercise you can manage. There's always the fear of infection, but I don't think you can let it rule your life - I've been into work and to my daughters' school and nursery without any problems so far. Just check your temperature if you're concerned and ring the hospital if you have any doubts at all, however minor. As you say, once you get started at least you feel you're getting the treatment you need and the waiting is over. Giod luck and keep posting here as it has really helped me! Also, I went to a local support group which was great too x
Lisac1
Member

Re: confused and scared

Hi jennifed
I'm doing ok, just getting ready to go for heart scan. Getting my hair cut beginning of next week just to shoulder length. Wig fitting on sat had to change the appointment due to heart scan. Haven't mentioned the new drug to be honest totally forgot about it. The hair loss is still a major thing for me. To be honest I've tried to put it to the back of my mind until it happens. There's talk of starting chemo next thurs but not confirmed yet. The sooner the better for me this waiting game is killing me. Xx
Jennifed
Member

Re: confused and scared

Wiffle and Lisac1 - how are you doing? I felt for your worries about hair loss. Please ask them about the drug to avoid it - it's new but no reason why you shouldn't have it.
Lisac1
Member

Re: confused and scared

Hi wiffle

I too am very scared even with all the knowledge. I have done nothing but research since my diagnosis. I have good and bad days and many a meltdown. It's such a hard thing to take in. I'm not ready for this to beat me. I will fight this and you will too. Cancer has ruined the rest of this year for me but I'm not gonna let it ruin the rest of my life. Hang on in there. Us woman are made of stronger stuff. Even typing this is making me feel stronger. Good luck xxx
Jennifed
Member

Re: confused and scared

Girls I have heard from a friend who is undergoing chemo for non- Hodgekins lymphoma that a new drug is available that prevents hair loss. She's under the Royal Marsden in Sutton which is a leading oncology hospital but it might be worth you asking your BC team about it. She's on her third round of chemo and she still has her hair.
wiffle
Member

Re: confused and scared

Hi thanks, im not at the kicking ass stage at the moment just the what the hell is happening stage, i guess when i am in the system and understand more it will help but at the moment lack of knowledge and choice is very scary. x

Lisac1
Member

Re: confused and scared

Hi wiggle

I was diagnosed on 20th may two days before we where going on holiday. On our return from holiday I too was then told I'd need chemo before surgery my whole world came crashing down. Since then like you my sister told my dad the devastating news who also doesn't keep very well. Don't feel alone, since joining this forum I have learned to come to terms with breast cancer, before I couldn't even say the c- word. To say I'm not looking forward to the chemo is the understatement of the century. Should start in the next 2-3weeks and they way I'm feeling right now I'm gonna kick some ass. This forum gives you slot of support. I feel positive about the treatment but my main fear is the hair loss. Devastated at the fact that a May loose it all. Have to keep telling myself it's a small price to pay, doesn't make it easier though. Hope everything works out for you and like I said this forum has been a lifeline for me. Xxx
Lucy_BCC
Member

Re: confused and scared

Hi wiffle and welcome to the BCC forums where I am sure the support will be a great help to you

Please also feel free to all our helpliners for further practical and emotional support, our team are on hand weekdays 9-5 and 10-2 Saturdays

I am posting a link to the BCC 'Just diagnosed' area of the site where you will find information and more support ideas from BCC including our 'So done like me' one to one support service, I hope you find this helpful:

https://www.breastcancercare.org.uk/diagnosis

Take care
Lucy BCC

wiffle
Member

confused and scared

Ive just been diagnosed with non hormonal breast cancer, was told on Tuesday, its stage 1, grade 3 and about 1cm, the ultrasound didn't show it in my lymph nodes. Im so angry because ive just moved into a wreck of a house with my two sons, one who was going through AS exams when i had the biopsy. I was told after the biopsy i would probably have a lumpdectomy then radiotherapy but when i came back in this week was told i would also have chemo, i felt sick and shocked. My dad is ill and old and my sister is going to tell him tomorrow , my friends are lovely and helpful in varying degrees but im sick of being told how brave i am, im a private person so don't bang on about it but its hitting me in waves. I suddenly nearly threw up yesterday and started crying out of the blue. I haven't gelled with the breast care nurse who seemed brutally honest, yes i would probably loose my hair etc, feeling totally alone and scared. the biopsy has been sent away for another test as its 'borderline' ??? for a certain type of treatment ( i was too shocked to take in what the consultant said)