Worried about my mum

I’m new here so I hope this is the right place to post this.

Back in September my mum went in for a routine mammogram. Just before going she checked herself and found a small lump, which she mentioned to the staff. However, it didn’t show up in the scan. It was slightly tender, but she didn’t think much of it as she has had slightly tender breasts on and off for years now. Then, at the beginning of November, she noticed that the size had increased a bit, and it was causing her some discomfort. She went in to see a doctor who looked at it and told her not to be concerned, but that she should come back in 6 weeks if it hadn’t subsided or was getting worse. Well, 2-3 weeks went by and the lump increased in size dramatically, and became very tender. The skin around it is fine, as is the nipple (no discharge or inverting), but the mass is causing her pain. She went to see another doctor who immediately booked her in with a specialist whom she saw on Tuesday this week.

The specialist (apart from lacking in bedside manner) seemed extremely concerned and was borderline angry with her for not coming in sooner. They did a mammogram (which she found very uncomfortable), and a biopsy, which determined that the lump was solid. The doctor ruled out the lump being a cyst. We are now waiting until Tuesday for the results of the tests.

My mum says she is very frightened but is remaining astonishingly calm, despite lack of sleep or eating. The rest of my family are in pieces and I am aware that they will need me to be fairly strong throughout this. I am doing an excellent job of this when I’m around them, but by myself and with my husband it’s a different story, I feel absolutely devastated and am finding it very hard to function. I was trying to tell myself that the fact that she is in discomfort was a good sign as we are so often told that cancerous lumps are painless, but I have since discovered the possibility of inflammatory breast cancer, and I am absolutely terrified.

I know that trying to diagnose stuff by reading up online is absolutely the wrong thing to do, but in the process of trying to educate myself I have scared myself witless. I have spoken to a number of friends about their experiences with breast lumps, and most of them have dealt with fibroids themselves, or have parents who have successfully treated breast cancer. I was feeling quite positive until this new possibility emerged, but now I feel totally desperate. We’re in this limbo whereby everyone wants the time to pass quickly so that we can just get the results and know for sure, but at the same time I don’t want Tuesday to come at all because I don’t want it to be the worst case scenario.

My mum and dad tend to err on the side of caution and can be a bit pessimistic at times, and on this occasion to them it’s almost like a foregone conclusion. My dad has visibly aged 10 years in the last few days, and my mum, although remaining calm and reasonably upbeat, seems prepared to accept that it is terminal. I know that she can’t know that until she gets the results, but she says that is what she is expecting based on the specialist’s responses and treatment of her, and also just on her gut instinct.

I don’t even really know why I am writing this, because I know that no one can tell me either way and we just have to wait and see. I am sorry that it’s so long. Thank you for reading.

Hi spacedog

The worry and concern you have about your mum are perfectly understandable and very often, the waiting for results is the worst part.

If you would like to talk to someone outside of your family about how you feel at the moment please don’t hesitate to use the Breast Cancer Care helpline. Here you are able to talk to someone in confidence about your fears and concerns and the team on the helpline are happy to talk to you and just be a listening ear if you feel you want to offload.

Breast Cancer Care are here to support you so please use us if it will help. The helpline is open Monday to Friday 9am to 5pm and Saturdays 9am to 2pm. The number is free phone 0808 800 6000.

I do hope the news is good for your mum on Tuesday.

Kind regards

Louise

Facilitator
Breast Cancer Care

Hi

Sorry to hear about your Mum. Waiting is the worst thing - I discovered a lump at the end of November last year, which was malignant and had spread to lymph glands. Finished chemo and radiotherapy by this August, but have now got most of the symptons of IBC, the swelling, heat, inverting nipple and ‘sheets’ of hardened ridges (not lumps). I am going for biopsy on Wednesday. Not knowing is by far worse that being given bad news, I feel.

Do try not to worry though. Before I had cancer I thought I would go to pieces - I didn’t, and I have never been so strong. The surgery, which I was so scared of, seemed so minor in retrospect and I managed to work through 6 cycles of FEC chemo and seven weeks of radiotherapy!

Loved ones often suffer as much, if not more, than the patient. Your poor Dad probably feels useless. As for the ‘terminal’ bit, breast cancer (and if she has a lump, it’s less likely I would have thought to be IBC) is 86% curable nowadays, and the treatment and care is excellent and probably nothing like any of you imagine!

Good luck - hope your worries are unfounded! Carol

Hi Spacedog,
I’m so sorry you are feeling so worried about your mum. My mum was diagnosed with BC this time last year and time seems to go backwards when you’re waiting for test results. I was devastated when she got the results and spent most of last Christmas crying - but even if your mum has BC, which she hasn’t necessarily, you will get through this. My mum had a lot of lymph node involvement and had had chemo, surgery, radiotherapy and has now started herceptin - touch wood she’s doing really well. This probably sounds hard to believe right now but once the initial shock subsides you somehow find a way to start looking forward.
The specialist who dealt with your mum sounds horrific, he should know better than to scare people like that. It’s not as if she has ignored the lump, she has done the right thing as seen her GP. If it only increased in size a few weeks ago it’s difficult to know how she could have been seen by a specialist much sooner.
There are lots of benign explanations, but if it is cancer, although devastating, you will all get through it somehow. You’re right though, self diagnosing on the internet makes it worse - I am terrible for doing that!
I wish you and your mum good luck for Tuesday, please let us know what happens.
Zoe x x

Louise,

Thank you very much for the well wishes and the helpline number. We are keeping our fingers crossed for Tuesday, but in the meantime I think I will forward the number to both of my parents, as I am sure they would both benefit from being able to talk to someone (and I might, too).

Carol,

Thank you so much for sharing your experience. My mum would certainly agree, she says that she has found the waiting the most difficult part of all of this. She is generally very good at dealing with difficult situations and this has been no exception. I think I know exactly how my dad is feeling, his motto has long since been “there are no problems, only challenges”, but now that this has come up I think he feels stumped. Usually any problems that emerge he has a solution for, but with something like this, there is nothing he can do to actively ‘correct’ it.

I am very sorry about your experiences so far, but I also really do commend your bravery and ability to deal with it all. I do hope that the current symptons you are experiencing do not turn out to be IBC. Best of luck with the biopsy and results, I hope that it’s all alright for you. I think part of the problem for me is that in an effort to better understand what might be going on, I have read so much stuff that new and frightening options keep presenting themselves. My mum’s lump is hard and sore, the discomfort sometimes keeps her awake at night. It seems to move a little (it moved a lot when they first tried the biopsy), and it is shaped (as she describes) like a small brick. It feels almost square to her. She has noticed no issues with her nippes (inverting or discharge) and the skin is fine, although a little stretched due to the swift growth of the mass. Of course, I don’t really know what any of this means, and sometimes few or no symptoms can be present and there is still a problem, or vice versa.

86% is actually a really amazing number, I had no idea that it was so high. I guess this is why in terms of the anecdotes I have heard from other people who have suffered BC, the results after treatment have been resoundingly positive.

Thank you again for your kind words and reassurance, it really has helped a lot. I wish you all the best for next week; please do let me know how it goes :slight_smile:

Take care,

-Tamsin

Zoe,

Sorry I missed your post, I think I was replying to the first ones when it popped up!

Thank you for talking about this. I do feel selfish because I wouldn’t wish this on anyone, but at the same time knowing that there are people going through the same thing is somehow reassuring. It is a really difficult time of year. My sister’s birthday was yesterday and like my dad, she is really struggling with it. They both have a tendency to bottle things up, so I hope that they will talk to someone. I have told them they can call me anytime, but I don’t know if they’ll take me up on it. Regardless of the outcome everyone has said that they will be on board to help at Christmas so that mum doesn’t have to do anything (which she’s very happy about)!

I’m so glad to hear that your mum is doing so well now, that is really heartening. I think it takes a lot of courage to go through so much. You are right about being able to make plans once you’ve received the diagnosis, it’s the not knowing that is the most difficult. My mum already has action plans for various outcomes, so she is definitely prepared (right down to knowing where she’d like to buy a wig from if it’s necessary).

I must admit that I was a bit irked to hear about the specialist. My mum is pretty easy to get along with, but she said she really struggled with him. There are a few other issues she mentioned, but fortunately she is fairly tough and have said that if he is unpleasant next time, she will (politely) say that unless his attitude towards her can improve, she’d like to discuss the matter with someone else.

Anyway, thanks again for your comments, and best wishes to your mum on her road to recovery. It sounds like she is doing brilliantly so far. I will keep you updated with what happens on this end.

Take care,

-Tamsin

Hi Spacedog, Just over a year has passed since my diagnosis. I can remember how horrible it is when you are waiting for results, but whatever the result there will be other people around your Mum going through a similar thing, and it seems much less scary when you can share your experiences.
I hope her fears are unfounded, but once she knows exactly what is going on, and how they plan to treat it it all becomes much easier. Take each step, one at a time and you will be amazed how well you all deal with it.
My life is now back to normal, following a mastectomy and reconstruction, and there are thousands of women like me who now get on with life as we did before.
All the best for Tuesday.
Take care

Heidicat

Hi tamsin

Just read your post about your mum.
I found a lump 3cm big in August. Was absolutly worried sick and waiting for all the tests, biopsies and results seemed endless I. live in Spain and both my eldest daughters live in England so it was a very worrying time for them being so far away. Specialists in Spain sound like the one your mum is seeing no bed side manner but i think they deal wuith it every day and try to stay very proffesional. No help to us dealing with bc.

Anyway got a bit sidetracked there. I had the lump removed 9 days ago and ther was not lymph involvment. Have to g back on 11th for finale rsults of biopsie. Some days seen totally overwhelming and the waiting for results endless but listing to other ladies on here we all get through it in our own way,

Try to stay poitive and strong for your mum and show her hw much you love her that will keep her stron

Good luck to you and your family and i will spare a thought for you on Tuesday while i am at the hospital

Again good luck

Lynnex x

Hi Tamsin,

It must be such a worrying time for you all - and to be doing your researching on the internet before you know any facts is always a bit dodgy - there are so many different forms that breast cancer can take, then the are so many statistics that it is enough to frighten you to death. Remember that statistics are just that - it isnt about individuals and regardless of the outcome of the tests your mum is having - whatever the dx - very few of us conform to those statistics. I have had breast cancer for 17 years now and the last mammogram I had did not reveal any problems - but within a couple of weeks I had a lump develop which like your mum’s grew very fast to a size of 7cm. That particular one was 8 years ago. I have found over the 17 yrs since my diagnosis treatments have changed and improved so much. As many here will testify - if your mums lump is cancerous - all the treatment isnt a lot of fun but it is doable and she clearly has the support of a loving daughter. Good luck for her on Tuesday and we will all wait to hear how it goes.

Dawnhc
xxx

Heidicat,

Thank you for the reassurance. I am so happy to hear that your life is now back on track after dealing with the diagnosis and the treatment. I do think it would help my mum to maybe talk to people in a similar situation, but obviously we will have to see what Tuesday will bring, and then I don’t want to feel like I am pushing her.

I do hope I deal with the actual diagnosis better than I deal with the waiting. Right now I am crying a lot of the time (especially at night when I get a bit tired but am having difficulty sleeping). My husband has been really amazing in his support, I feel very lucky.

Thanks again,

-Tamsin

Lynne,

I feel like waiting for the results time has just slowed down! My mum has said it’s the closest thing to hell she has ever experienced, she is just so worried and can’t sleep or eat. We downloaded some audio books for her for the iPod we got her for her birthday this year, so she listens to those at night when she can’t sleep to take her mind off things. I’ve also told her that as my husband works from home and often late into the night, and I’m a bit of a night owl myself, if she wakes in the middle of the night in a panic she is free to call us any time. I don’t know if she will take us up on it, but she seemed really happy to know that it was an option.

Yes, it seems doctors can really go one way or another. I totally understand the need for professionalism, and also to distance yourself from the situations you need to deal with, but at the same time I think that a bit of compassion and not actively making your patient feel worse go a long way! Anyway, I shall save that gripe for another time. I’m sorry you’ve had to deal with similar experiences.

It must be tough for your daughters; I used to live in the UK at a boarding school while my parents were in Germany, and I can’t imagine how I’d feel if I wasn’t there. I hope that they are doing OK.

Best of luck to you for Tuesday, I will keep my fingers crossed for you!

Take care,

-Tamsin

Dawn,

Yes, the internet researching has not done me any favours. My husband was saying the same as you last night; that statistics are just that, and everyone’s case is very different. I think I am feeling it hard because initially I was quite positive until I read about IBC, and I felt my heart just plunge.

It is very reassuring to hear about the improvements in treatments over the years. If my mum does need to go down that road then I really want to know a bit about it all so that I can better support her. 17 years is a long time to deal with this problem, you must have some steely resolve! Congratulations on coming through it all so well and staying so positive.

Right now the other concern I have is my sisters and my dad. My youngest sister is bright but has some learning difficulties, so she is quite vulnerable. She knows my mum is waiting for test results, but doesn’t know that it is potentially serious as no one wants to worry her unnecessarily yet. I’ve already found one or two links here that might help her (specifically devised for young people dealing with a parent with cancer), but hopefully I won’t need to pass them on.

Thanks again to everyone for your words of support, it really is invaluable. I will let you know how it goes on Tuesday as my mum has requested that I be there for when she gets home after the results.

Take care, all.

-Tamsin

Hi Tamsin

Really sorry that your mum and you are going through such agonies. I know exactly what your mum means by feeling it is the closest thing to hell she has ever experienced. My thoughts are with her. I hope whatever happens on Tuesday the knowing will bring some relief and she will quickly get a treatment plan sorted out.

Breast cancer is not just one disaese but many. The 86% ‘cure’ rate isn’t accurate I’m afraid but about 78% of women in the UK with breast cancer are still alive 5 years later. Prognosis is so much to do with what type of breast cancer you get. I think its perfectly normal to feel really scared right now. Quite honestly finding out I had an aggressive form of breast cancer (4 years ago now) was the worse thing that had and has ever happened in my life. But strangely the human spirit is remarkable and I think everyone adjusts to whatever the disease throw at us. There are wonderful good news stories out there and also horrible stories…at the beginning you just don’t quite know how your own story will turn out.

best wishes

Jane

Hi Tamsin

Just to wish your Mum luck for tomorrow - I will be praying for you all. Let us know what happens.

Kind regards, Carol

Jane and Carol, thank you very much for your messages. I just spoke to my dad now who has confirmed that my mum does indeed have breast cancer. She is currently talking to her parents and is going to call me very soon. I don’t know what stage it is at, but I do know that they have decided to go privately so that she can have the operation as soon as Saturday. I will fill you in on details as and when I know them. I am really upset but hoping that when my mum talks to me she will be able to tell me more about it all. My dad said they saw a different consultant this time (I think my mum was going to request it after the issues she had with the last guy) and apparently he was excellent and very reassuring.

Thanks again to everyone for all your well wishes. I think I will be telling my mum to sign up here as it seems to be an excellent support network.

Hi Lynne

So sorry to hear your news, but don’t let it get to you too much. There is such a positive side to breast cancer. I had a wide excision on 19th December last year and I was so terrified of the surgery, but one minute I had the giggles with the nurse that took me into theatre, and the next I was awake eating a tuna sandwich and drinking a cup of tea, wondering how I got into such a panic. The only painkillers I needed afterwards were paracetemol. Mind you, I don’t know how I would have reacted had it been a mastectomy. But my point is, the unknown is always far scarier that the ‘real thing’. Must go back to work now, I will ‘tunew’ in again this evening to see if there is anymore news.

Keep your chin up girl, and smile for your Mum!

Speak soon, Carol

PS glad she now has a nice Consultant - I have been under many departments over the past six years, and have never had one that wasn’t wonderful. Maybe I’m just very lucky, but I think your Mum was just very unluncky!!

Sorry Tamsin, oh God where did Lynne come from? My brain has been pickled by chemo. Carol

Hey Carol :slight_smile: No worries, I think Lynne is one of the more inventive takes on my names I’ve had!!

I just spoke to mum and she seems to be taking it in stride. Unfortunately due to the size and placement of the lump (and the fact that she is very small busted) she has to have a mastectomy. The appointment for surgery was orginally decided for the 2nd, but now that they are going privately it has been moved forward to Saturday (she said she found it rather sad that money suddenly stirs people into action).

Her consultant has also said that they are reviewing her case because disconcertingly it looks like the lump DID show up on the original mammogram back in September, which is hugely frustrating. On the plus side, the ultrasound showed no issues with lymph nodes, but they will take a few of the ones closest to the growth to ascertain whether or not there are any problems there.

Thanks for being so lovely, I can’t tell you how much it helps to read what people have to say here. I am setting off in a minute to get the train to see my parents and am taking my mum a little present (just a cardigan she wanted).
Hope work is treating you OK!

Take care,

-Tamsin

Hi Tamsin

Hope all went well with your Mum and she liked her pressie. The fact your Mum is having a mastectomy isn’t all bad - my friend had the same because of her breast size. On the plus side, when I had surgery last Christmas, I was warned that I could be back there at a later date, having to have a mastectomy, but they always try conserving the breast initially, if they can.

Hopefully, the lymph nodes will be clear, and then at least your Mum wont have to have the chemo as well. Even that wasn’t as bad as I thought it would be. Yeah I cried when I thought about losing my hair, but I actually felt quite liberated being bald, and even abandoned the expensive wigs and scarves after a few weeks - they drove me mad. No washing, drying and straightening every morning before I went to work, and no re-doing after walking the dog along the beach in all weathers! And no shaving legs and arm-pits - great. Have worn trousers/jeans for months, but got dressed up for a friends wedding reception last week - I think I lost half a stone when I had to shave my legs!! Carol

Hi Carol,

My mum had the mastectomy on Saturday. My dad and I went in with her at 6.30am, as the surgery was at 7am. She recovered very quickly from the general and I stayed with her all day just chatting and keeping her company. I also saw her on Sunday. Unfortunately I couldn’t visit today as I had to go to college, and mum said she had plenty of visitors including her sister and a friend coming. I tried calling her this evening and was very confused that my dad picked up her phone (thought I’d dialled the wrong number) as he doesn’t usually visit this late.

I knew it was bad news as soon as I heard him. He sounded upset and didn’t explain stuff very well. We were told that test results wouldn’t be due back until Wednesday at the earliest, but apparently they came back urgently today and it transpires the cancer has spread to the lymph nodes, despite what the consultant had originally thought. She was due to come home Wednesday, but unfortunately has to have another operation instead. I am so frightened for her. My blood ran cold as my dad told me, but poor reception and the fact that he’s not very good at talking on the telephone meant that I don’t really know the full story. He said he’d call later.

I feel completely at a loss. I think I was (and we all were) just coming to terms with having to deal with the breast cancer, and this just feels like a huge blow. I am not sure how to support everyone, I was saying last night that I wish there were three of me (a terrifying thought regularly, but right now it’d be really useful!) I need one to be with my husband, one to look after my dad and another to stay with my mum.

I don’t know anything about this next operation at all, and have no idea how it will affect her and how long she will have to be in hospital for.

Sorry this post is such a downer! I can’t decide if reading up more about it will help or make it worse. I hope that you’re doing well and looking forward to Christmas.

Take care,

-Tamsin

Hi Heather,

My heart goes out to you for what you and your mum and dad have gone through so far. First delayed diagnosis and horrid medics, then diagnosis, mastectomy and the prospect of further surgery for your mum all in rapid succession. I think lymph node removal is often done at the same time as or shortly after mastectomy and breastcancercare have a good booklet on this.

I was diagnosed with breast cancer 17 years ago and despite recurrences including one with very aggressive cells and spread to lymph nodes remain reasonably well. I too terrified myself researching the internet and then stopped when I realised I didn’t understand half of what I was reading and wasn’t getting the reassurance I needed. Cancer treatment has moved on considerably since my fist diagnosis and there are now some pretty good drugs around which are effective in killing off cancer cells.

This is a really awful time for you and it is no wonder you are crying at night. Your mum is a very special person to you. Believe me, you will feel better over time.

I found that when I was diagnosed and had treatment, I became a bit of a celebrity with all the attention, cards and flowers. I felt that perhaps my husband was having a harder time emotionally because he could only look on and felt impotent. There is a really good quote from a book “From this moment on” which applies to families of cancer patients.

It reads:- As a caregiver you may feel more helpless because it is not happening to you. You’re going through emotions on someone else’s behalf. You almost want to experience the physical pain because all you have is this emotional pain - and that invisible.

Keep posting Tamsin cos this site is brilliant and you will find lots of support here.

Wendy x

Sorry Tamsin bout calling you Heather in my last post. Chemo brain strikes again

Wendy x