I want off this blasted rollercoaster!

Hi, I’m a newbie who is scared out of her wits. I was diagnosed with IDC, grade 3 two weeks ago - a diagnosis that totally floored me. I don’t smoke, hardly drink alcohol, only recently stopped running and I eat relatively healthy - what the heck happened?

After the original diagnosis we then spent a week in purgatory waiting to see if the “git” as we call it had spread - luckily it hadn’t. However, we still don’t know about any node involvement as I am waiting for my Sentinel Node op (cheese louise - these are words I’d never heard of two weeks ago). I am 43 years old with two kids, 17 and 11 both of whom have taken the news fantastically well - too well! My DS17 is about to take his AS Levels in January, what carp timing for him. My DD11 is convinced it will be 8-12 months of “horrible medicine” but then I should “look on the brightside” as I will be feeling much better and ready to go on holiday!! Oh, I wish I had her positive outlook.

Mine is not a lump, it’s a 10cm “field change” as my Dr calls it. I have so many worries running about in my head. If it’s not a lump, does that mean it won’t respond to chemo? Does it mean they understand it even less? I am progestrone & oestrogen negative but Dr said I tested positive for Herceptin and that in my case this was good news - I thought it was the wonder drug so in what case wouldn’t it be good news and why good for me - in case nothing else works? See my head is running about all over the place, seeing negatives in every answer. Believe me, I am usually a glass half full kind of gal, this negative wreck is NOT me. They want to do an MRI for my “peace of mind” and so they can chart its progress. Is it really for this reason, or will an MRI tell them different things to a CT and bone scan? I am also terrified that they will give up on me - irrational, I know, I am usually the most rational woman you could meet. I am sorry for this rambling, mixed up post. Everyone keeps on telling me to be positive and how brave I am - I am not brave, I am scared out of my mind - why can’t they see that? I have so much I want to do - it’s been my lifelong dream to visit NZ and Auz.

I have been lurking on these boards for a week or so but have only just had the courage to post. I have met some fantastic ladies on a Disney Forum I belong to, who are just months ahead of me. One of them recommended I check this site out (as did my BCN - see I am learning the lingo already!) - I thank God I took her advice. Any advice greatfully received. If you are still reading this - well done and thank you. Debs xx

Hi Debbie

Welcome to the Breast Cancer Care discussion forums, you’ve come to the right place for some good, honest support from the many informed users of this site.

While you are waiting for replies I have put for you below links to some of BCC’s publications which you may find helpful. All BCC’s publications and services are free of charge. You may find giving the helpline here a ring useful, have a chat with one of the trained staff here as they’re also here to support you through this, you can ask them anything, nothing is too trivial. Calls are free, 0808 800 6000, lines are open Mon-Fri 9-5 and Sat 9 - 2.

Diagnosis and you:

www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/breast-cancer-you-diagnosis-treatment-future-bcc44

Resource pack:
www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/resource-pack-primary-early-breast-cancer-bcc145

Take care,
Jo, Facilitator

Hi Debs, not sure I can offer much advice as I was only Dx on 14th Nov with DCIS (also learning the lingo!) but I can let you know I’m in the rollercoaster car right beside you screaming away.

What has helped me be positive is focusing on one or two things at a time and not try to grasp the whole situation, implications and what ifs so early on in this journey…they’ll be time for that soon enough. In the last month I have had so many biopsy , MRI, mammogram etc appointments and decisions to be made left me reeling so rather than try to understand it all I just looked at what was in front of me today/this week and dealt with that. Easy to say of course and a bit cliched but it’s working. Keep strong…Zax x

Hi Zax,

Welcome to you also, to the BCC discussion forums. The two links I have put above earlier for Debbie you may find helpful yourself. Also I’ve put for you below the link to BCC’s publication regarding DCIS.

www2.breastcancercare.org.uk/publications/diagnosed-breast-cancer/ductal-carcinoma-situ-dcis-bcc39

Hope these help. Take care,

Jo, Facilitator

Hi Debs

Sorry you find yourself here. I was diagnosed on 6 Oct with IDC triple negative lump(s) about 8-10cm in circumference, the ‘alien’ had invaded my milk ducts. Mine felt like an infection, and presented itself as a ‘Boil’ then my boob went swollen and very firm within the space of about 4 weeks. I had the scans and biopsies and it turned out to be BC. My Sentinal Lymp Node and other nodes and scans all clear. I started chemo on 18 November, I have had 2 sessions and 4 sessions remaining, depending on progress. I am having FEC-T (3 x FEC and 3 x T). The chemo is first as they want to shrink the tumour(s), my boob has changed considerably in just 2 chemo sessions, it is much softer, and I can feel the lumps are reducing in size, sometimes it looks smaller than my normal boob and doesn’t give any sharp pains now. I am hopeful this is all good because at the end of chemo I will have to have a mastectomy, then radiation, then reconstruction, if I want one. Quite a long road ahead, and it does get very scary, and yes you will feel very traumatised and emotional, tired and sickly sometimes, but somehow get through it, although you will find that your energy levels are not as good as they were. All of us are different, but many women on here go through very similar treatments and emotions and side effects. I have lost nearly all my hair in week 3 of the first chemo, but have got a very good wig that looks fab and some nice little hats, the hair will come back after chemo, so not too worried. After your SLB and treatment plan is given you will find that you start to calm down a lot and just learn to deal with it, think it’s important to stay strong and not let it get to you - or the alien thing will be winning. 10cm sounds big but chemo will shrink it, I guess before you have surgery. Other ladies on here have been through this and theirs have shrunk, makes it easier for the surgeon to deal with, so I was told by mine. Wishing you all the best and don’t stress out too much as that will put extra pressure on you.

Best wishes, Paula

I’m only two weeks ahead of you. A lot of your questions I can’t answer, hven’t got all the questions answered about myself yet. Just a note to say I understand you so well, mind is racing and it’s so scary. I’m a Christian believer and this helps me no end to come to terms with what is happening to me just now.

Love from Christine xx

Hi Debbie,

Your post is very similar to mine 7 months ago. I was 33 and have had chemo, surgery and had my last radiotherapy today - but have ongoing Herceptin.

Your team will be treating you to cure you. Your onc will have said that it is good news in your case that you are HER2+++ as it used to be bad news prior to Herceptin as HER2+++ tumours tend to be more aggressive. However, Herceptin could be your wonder drug and has excellent results alongside chemo. I had a panic when I was told that I was HER2+++ - so I am sure that your oncologist was reassuring you. My oncologist said that in the worst case Herceptin cancels out the additional aggressiveness of HER2+++ tumours - but in the best case it is the drug that will cure you.

The MRI will be to get the most accurate picture of what’s going on - and they’ll be doing your boobs only - so it’s definitely not to see if there’s any baddies anywhere else - the CT and bone scan have shown that there aren’t. So, breathe and relax. I also presented with a large area (my boob suddenly went really big and hard) and apparently that’s quite common with Herceptin - but nothing showed up on my ultrasounds - it was the MRI that gave the most accurate picture for me. I had a lump of 2.6cm, one of 3.6cm and another area of 9cm. I had chemo first, along with Herceptin, and had another MRI prior to surgery to check chemo and Herceptin had done their thing - and the 2 larger areas had completely disappeared. After my surgery the path results showed that the 2.6cm lump had kind of imploded and was mainly dead cancer cells.

It is terrifying but the treatment isn’t nearly as bad as you will imagine it will be and you will get through it. I started my chemo in June and was on a thread with my lovely June buddies and we supported each other throughout. One of them flew to Florida to go to Disneyland with her children this weekend - a week after she finished treatment - and one of the ladies on the May thread has just flown off to Oz. So you WILL get to NZ and OZ - and maybe this will give you the kick up the bum to get there!! (Obviously funds permitting!).

x

Hi Debbie,

I haven’t posted before but have read many topics over and over again during the past year. Felt the need to respond to you as I know exactly what you are feeling. You are me 12 months ago.

I was diagnosed on 5 November last year with a grade 3 aggressive HER2+++ 4.5cm tumour which literally had appeared overnight. Can safely say that whilst I thought that was the worst it could get, the following week waiting for the results of chest x-ray, bone scan and liver scan for spread were even worse. Luckily no spread. There is nothing sinister in an MRI as opposed to any other scan, it is purely that that is the most accurate picture available. Because I am having private treatment all my scans have been MRIs (because the insurance company are willing to pick up the tab)

Honestly, that was the worst time mentally. The treatment is bad make no mistake -I had 8 chemo sessions (4 A/C and 4 Taxol) and had them 2 weeks apart (most I think have them every 3). Almost immediately the Taxol sent my fingers and toes numb, but as I type away now you would never know. 2 days after each chemo I had injections in my stomach to stimulate my bone marrow so I could have the chemo every 2 weeks. Husband got quite good at stabbing me by the end. By the end the tumour had shrunk to such an extent it was just dead cells so had them removed rather than a full mx which I had been expecting and preparing for. I then had 4 weeks of daily radiotherapy. From the 4th session of chemo I was also having Herceptin every 3 weeks which I am still going for. Only got 3 to go with that one now. I managed a week-end in Paris and a week in Devon towards the end of my chemo.

All major treatment except the Herceptin and Tamoxifen which I am now on is done and I went back to work full time at a large London law firm in August. I still feel tired at the end of the week, but then I think I felt tired before. I now fit in the Herceptin first thing every 3rd Wednesday before work.

Your daughter is right, she isn’t make light of it, 12 months down the line you will have got through the worst of it. I even find myself saying to people when they hear what treatment I have had, saying “oh it wasn’t as bad as it sounds” which maybe is just the passage of time.

The best advice I would give is to make sure you get enough anti-sickness when having chemo. I made a point of saying to my oncologist that that was my big issue and she made sure she gave me enough so I never even felt sick. As she said there is no excuse these days as there are enough anti-sickness drugs about.

You will get there and you will find what works for you.

Take care.

I’m three and a half years from my dx but, honestly, it now feels as though that was a previous life!

Now is the worst time but it will get better, I promise. Once you get onto your treatment regime you feel as though you’re battling it. Cross the treatments off on the calendar and before you know it…it’s over.

It will be over before you know it and you’ll be out the other side planning a holiday.

Mal

PS We’re off to the caribbean after Xmas

Thank you all so much for replying to my rambling post of yesterday. To be able to “speak” to people who understand how I am feeling is such a relief, though I am sure I am not telling you anything you don’t already know when I say that. My family and friends have been wonderful, so supportive and loving but they don’t really “get” how I am feeling, how can they? If I am having a good day they all seem so relieved and I feel guilty about bringing them down when I am having a bad day.

A close friend found a lump about 3 weeks ago, firstly her Dr treated it as an infected cyst (it was painful and swollen) but after antibiotics didn’t work he has referred her to our local Breast Clinic. We will both be there tomorrow, me to meet the Onc and her to have a mammogram and ultrasound - I can’t believe it and am really praying for her that it turns out to be nothing sinister. She is in pieces but keeps apologising to me for making a “fuss”, poor woman my heart goes out to her. At least I have an answer, she is in that limbo land of the unknown.

Sandytoes - thank you so much for explaining Herceptin to me in layman’s terms - I was too scared to ask last week, too scared the answer might be something I didn’t want to hear.

Daysie - ours sound so similar, even down to the size. When I tell people how big it is their first question is “don’t you mean 10mm?”, which worries me so much. Since DX I have had stabbing pains in my breast - I thought they were psychosomatic at first but now I know its the cancer making itself known. I can only assume the biopsy has upset it. It looks as though we will be following the same path this coming year with chemo, mx, rads and reconstruction.

Zax - have you been talking to my Mum? She said the exact same thing to me in the car today - try to stop looking too far ahead, deal with the now. You are right, its very good advice and one which I am going to try and put into practice from now on.

3network3 - I have always believed but must say I have prayed more these past few weeks than I have ever done in my life. I also said a huge thank you when I got the results of my ct and bone scans last week.

SamLee - thank you so much for taking the time to reply to my post. Your reply is so encouraging. Thank you also for the tip about telling my Onc how worried I am about the sickness. The tiredness I hope I can just deal with but to be sick too?? I hate being sick.

Again, thank you all so much, I can’t tell you how much you have all helped me calm down a bit. I hope I have used the right abbreviations - there is such a lot to learn isn’t there.

I wish you all well with your treatment and recovery and I am sure I will be a regular visitor to these boards over the coming months and will look out for you all.

Love

Debs x

Hi Debs,

Really glad you found us over here (if glad is the right word - you know what I mean!) I hope these lovely ladies have helped to put your mind at rest - you’re really not alone.

Well done on the acronyms - there are so many it can get confusing but there’s a thread here share.breastcancercare.org.uk/forum/abbreviations-and-acronyms-used-on-the–forum-t24993.html that explains most, if not all of them.

It’s my first anniversary of DX in two days - I can’t believe so much has happened. In a year’s time I hope you’ll be in the position I am now, giving a large two-fingered salute to the last year and raising a large glass to the next one.

Love,

Jane (folkie) xxx

Hi Debs

Like you I have never smoked, barely drink alcohol, could maybe lose a stone but generally am active and eat healthily. My BC is ER positive. I had 2 operations in July and August to remove lump and lymph nodes, I was anxious about chemo and in September it looked like a long road ahead but now December and I have 1 chemo left in Jan then Radiotherapy. Everyone responds differently to chemo but you should feel more confident once you know what to expect. Be positive. Not sure how often you are having chemo but I have one week then 2 chemo free weeks. In the chemo free weeks I feel normal and just rest the week of my chemo. Good Luck. Do what feels right for you.

Hi Debs, how did today go for you and your friend? Hugs Zax
PS Say Hi to your Mum for me;-)

Evening Zax - Mum says hi back! lol

Hi Jane (Alto) - thanks to the link for the abbreviations, I really need to study that and, yep you are right the ladies over here have really helped, but I still keep a copy of your email with me hun x

My friend got the all clear today, I’m so pleased for her. She does indeed have an infected cyst as her GP thought but her mammogram or ultrasound also showed up she has a vitamin deficiency - evidently its something that comes with getting older! LOL she is only 42. She was a very relieved lady when I saw her earlier.

I met my Onc today, lovely lady - very on the ball. We chatted about the options open to me (ha - shame there isn’t an Option C - wave a magic wand and it all goes away… :wink: ) We have chosen to go with Option A - chemo first, followed by a full masectomy next year. The reason being that she said it really doesn’t matter which way round we have the treatment as the outcome will be the same. I asked her the million pound question - is this cancer survivable - she said the words I have been desperate to hear - ABSOLUTELY YES - that’ll do for me. Naturally she followed it up with the get out clause “I can’t offer any guarantees…” but I chose to ignore that part.

So, its all systems go now. This Friday I have an MRI of my boobs - you go in feet first evidently which is good for me as I hate those tubes at the best of times - all that clicking and banging! Then the same afternoon I have the Sentinel Node op and will - fingers crossed - be home Friday night. That’s good because my sister, her DH and their baby are all coming this weekend for our annual “Fakemas” so I will still be able to enjoy that - though I probably wont get as many cuddles with my nephew as I would have liked.

The chemo is scheduled to start in the New Year - so I will be able to eat my M&S 3 bird roast that I ordered a couple of months ago before this nightmare began. Its going to be same as “myexperience” has - one week on, two weeks off. I am starting with Herceptin & Docetaxel (Taxotere) for 3 doses then the Herceptin stops and they change it to EC only for another 3 doses. Once that has finished I will be on Herceptin for a year.

We were supposed to be going away with friends for New Year but I have said I would prefer to spend it at home this year - I just want a quiet one with my family before we start the long haul battle.

As you can probably tell, I am feeling much more upbeat today. I have been told over and over that I would feel better when I knew my treatment plan, tbh I didnt see how I would, but its true. Its probably because I now feel back in control of things, as you all said I would.

Once again ladies, thank you for listening and as always “onwards and upwards”

Love

Debs x

P.S I Just wanted to say to Mal - have a fantastic holiday in the Caribbean - lucky you eh!!

Hey Debs, you do sound much more back in control, you must be relieved (in the grand scheme of things). Good luck with the op tomorrow, I’m had WLE and SNB last week and managed a hug or three with my nieces. It’s results day for me tomorrow so let’s hope all goes well for both of us. be strong and catch up soon…Zax xx

Hi Zax - how did you get on with your results on Friday?

Just before I went into hospital I got a letter telling me my chemo starts this Wednesday, couldn’t believe how that affected my mood. I went from calm to terrified in about 30 seconds flat! On reflection I am glad its starting just scared of the unknown I suppose.

Hope you are ok hun.

Debs x

Hi Debs
Hang in there…it’s just a downhill bit of this bloody roller coaster! Chrissiew from the Nov Diagnosis thread has just had her first chemo session and she posted “not as bad as I imagined”. Which is probably no great help getting those imagination demons under control but how ever crap it is, it’s one step closer to finishing.

Yup, got the results on Friday and overall they are good. They confirmed stuff in the left was pre-cancerous cells which was new news (bummer) and the IDC Grade 2 in the right but all the margins were clear and my nodes were clear…yay…so had a glass or two of fizz to celebrate the small win!

On the treatment side it’s defo rads and tamoxifen but there is still some question mark about whether I will also need chemo. They are doing another test called Oncotype DC which can determine the percentage likelihood of recurrence. If it’s high then I’ll be joining you for that part of the roller coaster…

Had my first taste of dealing with the ‘you must be cured then’ in response to my results. I knew it was coming but it’s still hard to hear. I keep reminding myself how ignorant I was about BC before I joined the club.

So all in all doing good although still not sleeping well as you can see! How was the fakemas and more to the point what is a fakemas? Did you get your required number of hugs? Love Zax

Hi Zax

Great news about your nodes being clear hun - no wonder you celebrated! I’ve just toasted you with a swig of Lucozade lol.

I’m a bit shocked at the pain I am in with the SNB to be honest and did worry that something was wrong. However, I posted over on the treatment: surgery forum and some lovely ladies reassured me the burning, tingling and tightness in the old bingo wings are all normal - phew! Started my exercises last night - honestly, last week I was reading the pamplet thinking “blimey, these will be a doddle” - after ONE set last night I was out of breath and feeling faint - very disappointed in myself so I will do better today.

Fakemass was great! I got lots of hugs and wet kisses from my nephew but sadly, I couldnt hold him as he is at that wriggly stage (7 months) - next time though… Fakemass is my sisters name for where we celebrate Christmas a week early because my sister won’t be here this coming weekend and we are quite a big family who love getting together (my dad is Irish so its any excuse for a knees up lol).

My sister, her DH and baby have recently moved from Abu Dhabi to Newcastle and we are down here in Essex. His mum was diagnosed with vaginal cancer last December whilst they were still living abroad and they felt so helpless being so far away. So this year they moved back to the UK and they want to spend Christmas with her - very understandable. Gill (sister) has been knocked sideways by my diagnosis and feels so helpless again, she wanted us all to have a great time on Saturday - just in case this weekend is a washout. We ate a lot - thanks Mum & Dad - and had a lot of laughs, I bought the board game - Logo - oh my god, the rows that game caused - accusations of cheating flew left, right and centre. It definitely took my mind off of things for a few hours. Mind you, I was cream crackered yesterday and spent most of it asleep.

I am starting with Herceptin on Wednesday, Dr said there are minimal side effects (not according to the ladies on this site there aint!) I am just going to hope for the best - judging by the leaflet they gave me last week, if nausea and tiredness are the only side effects I suffer, I will have got off lightly I think. On Friday I go back for the Docetaxol. You know, the main thing I am dreading is the needles - flipping hate them but the thought of having a PICC line is making me squirm - big baby eh! lol.

I hope you managed some sleep eventually, I was awake around 4am too - lack of sleep is awful isn’t it? I will keep everything crossed for you that the Oncotype DC test comes out in your favour hun and that you don’t require the chemo. When will you know? Will they hold off Rads until they know the answer to that test?

Thinking of you

Debs x

Hi Debs,
Yay! Another cause for a glug lucozade…I finally finished wrapping presents!

The exercises do get easier and there are defo some strange sensations…not to mention the nice hairy armpit. Eeeeuw! Your treatments seem to have started in ernest, let’s hope you don’t get too badly effected. Maybe sometimes we forget for every post we read here there must be someone out there who doesn’t get effected so badly. When my Mum had chemo none of her hair fell out and she worked all through her treatment.

Tried to find out when the Oncotype test results will be back but no joy so I suspect I’ll get an appointment with the Onc at the beginning of Jan and he’ll tell me then. Rads will wait till I have healed more from the SNB and will come after chemo if that’s what it turns out to be. Not much I can do till the NY now so might as well make the most of the time off with the OH. Think he’s a bit done in from this all.

PS sounds a great idea…might steal it for next year! Or I’ll get your Mum to invite me!! LOL

Bugger…operator error! Pressed submit by accident.

Anyhoo, Let me know how Friday goes and hopefully it’ll all be done with in no time. I’m off to count sheep. Catch up soon…love Zax