Dear all
This is my first post. I’m hoping it’s going to be the first of very many as I fight the cancer I’ve been told I’ve got and then go on to be somebody who, in years from now, posts encouraging posts to newly diagnosed people like me. I’ve read many posts over the past two weeks and they’ve given me strength and hope in what has been an absolute nightmare. The women out there who kindly take the time to post on here to help people like me really should know how much it’s appreciated.
Mine is a bit of a long story which I won’t bore everyone with but basically I was sat down by two breast nurses two weeks ago on Wed and told that they’d found cancer cells in a swollen lymph node under my armpit. I felt like I’d been hit by a train. The mammogrammes had been clear and also the ultrsound hadnt picked anything up except the swollen lymph node. They said because of my age (I’m 43) I have very glanduar breast tissue I had to have further tests to find the primary source. I’d had a bad chesty cough and sore ribs for several weeks before (I thought from coughing) so they said I’d need a full body CT scan and MRi’s of my breasts and bones. My world went into a complete spin as I just thought I was going to die. I’ve got a beautiful little 5 year old boy and brilliant other half and the thought of leaving them was just so acute and painful to bear.
I had the CT and MRI’s the next day and last Monday was recalled for an ultrsound-guided biopsy. The MRI had shown three lumps, one they were happy was benign, one they couldnt find on the MRI (postieror something or other (10mm x 11mm) and the other they took a core biopsy of. On Wed they told me the biopsy results - it was a Papilloma and not the culprit so now I have to go for an MRI-guided biopsy of the one lump they couldn’t find on the ultrsound. They said the CT and MRI bone scan was clear which nearly made me faint with relief.
So, this Wed I have the MRI biopsy and wlll probably have to wait yet another agonising week before I know any details of the cancer. I’ve read so much about staging, grade, hormones, treatments, etc. but I have no idea what’s in store for me until they have more detail on the pathology. I still dont understand why they can’t tell more from the fine needle tests that found the cells in the first place but they say there’s not enough tissue to assess any further than there’s adenocarsinoma cells identified. Each day I keep thinking well I mght be clear everywhere else now but every day of waiting is a delay to attacking this cancer and it could be spreading further each day. They told me a few weeks in the big scheme of things wont make a difference and I know they need the detail to be able to plan the treatment but it’s so hard not to torture myself with scary thoughts.
I’ve read a number of posts about the agony of people waiting for results and I feel so much for them. It looks like I’ll have to have waited for 3 weeks from them telling me I have cancer to finding out what it is/where it is/what they can do, etc. I can’t bring myself to tell my lovely mum as yet until I can say ‘I’ve got this but they can do that to sort it out’. I cant think of her running every possible horrible scenario through her head, like I currently am, without being able to give her some reassurance.
My other half has been a complete rock and I have the best incentive in the world to beat this and that’s my little boy. I’ll no doubt be back on here once I know more details to seek advice along what I know is going to be a difficult journey but it certainly helps to know there are people on this site to turn to/speak to/cry with/laugh with and hopefully celebrate the positive milestones with.
Good luck to you all and take care.
Col x
Hello Col and welcome to the Breast Cancer Care discussion forums where I know you will get lots of good, honest support from the many informed users of this site.
While you are waiting for replies, just to let you know that if you need a good listening ear, someone away from the family to talk to then the helpline staff are only a free phone call away, they’re here to support you through this. No question is a silly question, just ask anything you need to. Lines are open Mon-Fri 9-5 and Sat 10-2, 0808 800 6000.
Take care,
Jo, Facilitator
Hi Col, yes it is such a shock to the system and the waiting is horrible. No matter how much you try not to worry your head is all over the place. When you do have your plan things move very quickly and you don’t have time to think! Brilliant news about your scans and two of the lumps, the only advice would be is to try and keep busy, talk as much as you want to, sometimes it’s better to get all your worries out and keep posting. Sending you lots of hugs, take care of yourself xx
Col123
My story is very similar to yours so have also had the agony of tests and waiting. I found a lump under my arm in Feb tis year, mammo & ultrasound both clear but cancer in my lymph node assumed breast cancer as it was 6/8 ER+. Had MRI waited a week for results & no lump. Then CT scan & bone scan waited another week and all ok except for cysts on my ovaries. Ultrasound on ovaries to rule out ovarian cancer. This took 5 weeks of weekly appointments and tests. I decided to have a mx although there may not have been cancer in my breast. Had my op at the end of March & was absolutely fine. I also panicked that the delay was making things worse but they assured me that wasn’t the case, but I did have a provisional surgery date booked in before all the tests started. The pathology tests on my breast found no invasive cancer only a small area of DCIS and lots of ‘dodgy’ tissue. Apparently this is rare but does happen, in fact there has been another case this year at my hospital.
It does mess with your head having bc without cancer in your breast & the waiting for the test results was the worst time of my life. Make sure you get a good bcn, mine kept both me & oh sane during that 5 week period. I will never be able to thank her enough.
I have now finished chemo, which was doable & I worked throughout it and have started rads. The treatment & outcomes for me are no different to if I had cancer in my breast & there are studies that have confirmed this but not many.
Other tips:
Don’t google it will freak you out
Ask lots if questions of your surgeon & onc to make sure you understand what is happening and you do have choices
Your OH is probably feeling as bad if not worse than you
Remember it is treatable
Use this forum it is fab particularly if you have chemo
Please DM if you have any questions, I felt quite alone in the beginning with my odd diagnosis so am happy to answer anything you need to know.
There is a light at the end of the tunnel & you are in the worst place at the moment.
Virtual hugs
S x
Hey Col,
the begining was much the worst for me - the shock, esp I found the shock of having cancer in my lympn nodes as well as my breast really difficult - but as evryone says once you have a definitive diagnosis and a treatment plan it gets easier, not great thats true but easier - I am now 2.5 years since diagnosis , doing OK and only pop on here sometimes to catch up with old friends,
all the best Nicola
PS I didn’t tell my Mum anything until all the tests were completed & I had a surgery date. Including her in the waiting for results would have made her ill so left it until I could tell her a treatment plan.
Posted on behalf of new user Judi - Jo, Facilitator
Hi All I am not sure where to start. I am 56 and I have just had my second mastectomy after a 20mm tumour was discovered in my left breast. I also had one node removed. In 2008 I had a mastectomy with 4 nodes removed after 2 areas of DCIS were discovered. That surgery had clear margins and clear nodes so no further treatment was recommended. This time my diagnosis was that there were clear margins in the breast tissue but HER2 cells were found in the tumour and the node which was removed. I now have an oncology appointment on the 8th November to be advised of the various treatment I may have to undergo. I understand I will have to have some form of chemo and will be on herceptin. I will also at some stage have to have a node clearance and perhaps have to have some radiotherapy. These details are still not clear until I see the oncologist. My husband had a heart attack last year and this news has been very difficult for him. I just can’t deal with his detachment. He is finding it hard to manage how my diagnosis has made him feel very angry. He works away from home so I am alone for 4 days a week. My daughters live in London and Singapore. I am in Plymouth, Devon, UK. Because of the waiting I am unable to return to work as I am a live in carer so I am going completely spare at home and suffering terrible cabin fever. I do not have a car of my own so rely on public transport. I would love to hear someone else’s experience especially someone who may be or have been in a similar situation. Finances are also a huge worry at the moment. I have been in contact with the MacMillen folk but the help seems to be quite limited to what they initially told me was available. I am feeling so useless at the moment. Any suggestions? xox
Just bumping this up Judi to see if someone can offer you their thoughts, very ebst of luck - there is lots of good advice on all the threads on here and when i was stuck at home it really helped me,
best wishes Nicola
Thank you all so much for your replies. It really helps me at the moment to hear good news stories. The tips are also useful. Southpool - I’ve tried to stop googling everything as it’s depressing but I feel like I need to know everything there is to know so that when they finally tell me what’s going on, I can make informed decisions quickly. There’s just too much to take in though when you have no idea what you’re dealing with. I’m just trying to take in the overall basics and then when I know more about the type of cancer, I’ll check the detail.
Anyway, MRI biopsy tomorrow. Does anybody know anybody who’s had one of these? There doesnt seem to be that much about how they do them? what to expect, etc? I assume it’s pretty much like the ultrsound core biopsy but in an MRI machine. Fingers crossed for the results. If the third lump isn’t the culprit then I have no idea what they’ll do.
Anyway, many thanks again and I’ll keep in touch. Take care of yourselves. Col x
Judi - I’m so very sorry to hear what you’re going through. I really feel for you. We’re in different places in terms of diagnosis, etc so I’m afraid I’m not the best person to help you but I’m sure somebody on here will come along with reassuring words at some point. The people on here all seem very kind and helpful. Take care of yourself and I’m trying to keep busy if that helps. I’ve gone a bit mad with a paintbrush today in the house and that helped me to forget the pain and anxiety of it all just for a little while. I’m sorry I can’t help you more but I’m sure someone else will. Col x
Had the biopsy today which was a vacuum one and so it sounded like they were drilling me to the table! There was more blood than with the ultrasound one, which was a bit of a shock but I suppose they’find the sourcere doing all they can to find the source. They did two biopsies, which again was a shock as they’d said just one. I’m now confused about what’s what but I think the second was on the lump they’d said they were confident was benign. It was a different doctor in a different hospital so the information wasn’t quite joined up.
Anyway, I’ve now had three biopsies and two needle aspirations so I feel like a pin cushion. With all the bleeding I’m also worried about cells spreading but they always reassure me on that one. I dont know though.
I can’t stop thinking how sad it is that a breast I fed my little boy with, that did such a wonderful thing, can now be such a nightmare to me. I suppose most people who’ve breast fed think that. It’s just such a sad thing.
Anyway, little one will be home soon full of tales fo school, who’s been naughty, etc so that’ll be the best distraction.
Thanks.
Col
Col,
Your comment about your breast and your little boy sums up exactly how I feel but hadn’t grasped yet so thank you for putting it into words for me.
Hope u get some answers.
Hi Col
I’m so sorry you are having to go through this. I didn’t have to have any really yukky biopsies whilst awake as they did mine during a microdochetemy operation.
I hope you get on okay and I’ll keep checking to see your updates.
Good luck sweetie!
Viv xxx
Thanks for the helpful comments. It really does help.
I just feel a bit bad for Judi at the moment. When I found this forum it was like I was trudging along a lonely road desperate with the awful news I’d just been given and then I came across this huge room with lots of people in it chatting, crying, helping each other through it all. I peeped through the windows for a bit and I listened in on some conversations and I thought this is the place I need to be in. So I opened the door, put my hand up and shouted HELP! Lots of people came to me and it felt like I’d been sat down, given a hug and reassured, which is just what I needed. With Judi’s post popping up in the middle of my thread, I feel like she came in just behind me but I shouted that bit louder than her so nobody really heard her. I feel bad that she hasn’t had much of a response as I know there’s lots of lovely people on here only too willing to help. I thought her post maybe should have been a new thread to get it noticed a bit better but the moderator said it was where it should be. I don’t really know how these things work.
Anyway, thanks again to all those who have replied to me as it’s clear there are so many people on here seeking the same reassurance as me and there are only so many of you to go around!
Take care all.
Col x
Hi Judi and Col-I was diagnosed in Spetember 2011 -I had a 21mm grade 3 her2positive tumour removed. My margins were clear and the SNB was negative. I was told that I would need chemo rads and herceptin wich I am recieiving for one year.
I found it very difficult to get my head around. Although the margins and lymph nodes were clear I still neede all of the treatment which was my insurance policy if you like. I was terrified of all that lay ahead of me, I did not know how I would cope etc. However, I feel it all comes down to trusting your medical team and having a treatment plan in place will help you stake each step as it comes. I would tick each chemo session off the calender and would treat myself to something nice after each session. The chemo was doable and I was devastated when I lost my hair-I think if we’re all honest, losing your hair is one of the worst things as it knda makes it all a bit real , if that makes any sense. The radiotherapy was so much easier and I only had minor redness which I was given cream for.
I am halfway through herceptin-I gwt this in three weekly cycles and it willbe completed in May 2013.
I kept ringing the BC nurses and felt I was making a nuaisance of myself but I really need them to expalin things to me. Use them when you need them-thats what they are there for-they are so helpful and can get you as much information as you need.
Now I am one year on-I have had just had my first annual mammogram which was ALL CLEAR and am going to mark the occassion by getting my hair colured at the hairdressers tomorrow! I am 7 months post chemo and my hair has grown back really thick and grey-see, it DOES grow back and slowly you strat feel like yourself again.
Pleas don’t google anything-it will scare you and you will be reading stuff that is outdated etc. This site is amazing and I have made some really good friends through here-everyone understands and gets it.
hope this helps you too.
Hi,
I am just popping in to say hi and to say that even though Im not too far down the journey myself (diagnosed his June) the waiting for results and the initial bit after I found out about the b.c was the worst bit for me. I chose a very radical option of a bilateral mastectomy and am now having chemo but despite this the waiting is the worst thing.
I am similar age to you Col (Im 41) I have a 6 year old boy and also a 13 yr old daughter and 15 yr old son. Interesting you say about breast feeding as I b.f for a prolonged period of time (some would say!) partly mainly as b.c was always on the agenda for me having a very strong family history. Also my job is as specilaist midwife helping mums to b.f …quite ironic I always think!
Judi I dont have much to add personally but hoping that you find the answers you need out there. Maybe you could consider contacting Mcmillan again or the breast care nurses. Thinking of you!
Good luck ladies
mandy xx
I am recentlydiagnosed and I know exactly how you feel. My bc is her2 pos which is termed aggressive . It has and still is rocking my world. I have been told to day my chemo starts 31stOctober,Halloween! I can’t believe it is all happening. My husband has also been amazing we have 3 girls 14months 10 and 14 . It is soooo hard to let them go thro this with me as a mother you’re every instinct is to protect. Goodluck with everything sending positive understanding. Noranelly
Jaxette - brilliant news on the mammogram and thanks for the tips - hope the colouring goes well!
Mandymid and Noranelly - thanks for replying and I’m so sorry you’re going through this awful situation. If you don’t mind me asking, what did you say to the kids? I want to keep it all very low key and matter of fact as I dont want him to worry but equally, I dont want to fib to him. He’s only 5 but a bright little spark and able to pick up on anything that’s not quite right.
Good luck with the treatments. I’ll be thinking of you.
Col x
p.s. Noranelly - Halloween may be a time for scary things but it’s also a time for treats so make sure you treat yourself afterwards.
Hi Ladies, particularly Col and Judi, for a little light relief amongst the gloom, take a peek at the BENCHLAND thread, its our own little fantasy land, takes a couple of visits to find out about all the residents and treats, but there are parties and fireworks and loads of fun to take your mind off the real world,
See you there xxx
Barb
Hi again Col
What we told our 3 children was based on what we thought they could take on board and we told them all on their own. Actually telling the little one who was then 5 also, was a breeze compared to the teens. We just said mummy has a poorly booby and will be going into hospital. He said “Who’ll take me to school!?” Which I think is a great 5 yr old reaction ie its all about him and lets face it at 5 it should be. Since then with all the ca stuff on ther tele he has asked more stuff, and said things like “Mummy she’s bald like you!” Yes son thanks for pointing that out! haha! He said to me the other night “Mummy what happened to you?” I just explained that the doc had found a little lump and that he had taken it out and was giving me medicine to make sure it didnt happen again.
We have been totally honest with all of them from the outset (Well only once I knew what I was up against not before as I didnt want them worrying if it turned out to be nothing.)
Mandy
Dear Col123, I as well as many others do know what you are going through. It is as though you have been hit by a train and the first thing I remember saying to the breast care nurse was 'Am I going to die? I have two daughters! She replied, no, of course not - it is treatable. The waiting is terrible, - I was advised to act as normal, just carry on with normal activities which is the right thing to do. However, although the medical staff have been brilliant, they were not experiencing what I was going through. I remember when I was waiting for my MRI results, I had to wait 10 days, the results were due back on the Monday - I gave the hospital a call on the Thursday before as the agony of waiting was too much to bear. I was lucky and my consultant agreed to see me on the Friday as he had already received the results from the Pathology lab. It doesn’t do any harm to give them a call and tell them you are worried, depending on the hospital and your consultant they may be able to give you some information before the due date. I found the breast care nurses were wonderful and have given me all the support I needed, they did not mind how many time I called them - they are there to help you. Lets hope and pray you have the all clear and if not, you have will have the wonderful support and love from your other half, your little boy, the medical staff and all your friends and family, they will help you through this - please let us know how you get on. All the best to you.