68.4K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Enough is Enough

Brenda77
Member

Re: Enough is Enough

Thank you so much.  Everyone is so kind and reassuring.  I will let you all know how I get on tomorrow.

Lots of love, Brenda xxx

feistyflora
Member

Re: Enough is Enough

Hi Brenda

 

Most people have the same reaction as you. I remember feeling very frightened too when I was told that I had breast cancer, I thought "I can't believe this is happening, it feels like a waking nightmare". I had DCIS by the way and my lump was the same size as yours. I also couldn't sleep at night for worrying (incidentally there is a night-birds thread on the forum for the insomniacs amongst us). Well I'm still here two years after my diagnosis, I've been given the all-clear for the second year and I feel fighting fit now. Actually sitting in a comfy chair while chemo is being administered isn't anything to be afraid of, it doesn't hurt at all, in fact I remember being rather bored! The side-effects that start a few days after make you feel rough but we all got through it and so can you. Remember that you will have the support of the breast cancer nurses at all times. Just bear in mind that chemo is your friend because it is killing the cancer for you. It must be hard if you live on your own but you never have to feel alone. You have definitely come to the right place. This forum is full of kind people who understand because they have experienced what you are about to go through and they want to help you in any way they can. I am sure that you will feel calmer once your treatment begins.

Brenda77
Member

Re: Enough is Enough

Hi Ruth and Sue,  Thank you so much for your support.  When I read your posts they do really help to calm me down.  I see the surgeon tomorrow and, if he agrees, then I think double mastectomy would be best for me from the emotional point of view, instead of a mastectomy on one and lumpectomy on the other.  I will let you know how I get on.

Lots of love, Brenda xxxx

PeggyCat
Community Champion

Re: Enough is Enough

Hi Brenda, hi Stacey,

 

There has already been so much good advice given already but allow me to add my twopenneth in the hope that it will offer some reassurance. This time last year I was spending the bank holiday weekend in hospital after my mastectomy and reconstruction. I'd never had surgery before and was terrified that I'd be laid up in bed for weeks rolling around in agony. It was not like that at all. While I was lucky to have my husband aound the place for the first few days, I could do a lot more than I ever anticipated I would be able to. I did the exercies religiously and had full movement back pretty quickly. Post-surgery drains are a little irritating but livable with. Two weeks afterwards I was out attending our annual street party and nobody knew there was anything wrong with me apart from a couple of neighbours who I told at the end of the day who were all shocked as I looked so normal. My neighbours were fantastic all though the treatment - not bothering me constantly but sending texts when they went to the supermarket to check if I needed anything. Although we all have busy lives many people are essentially kind and will support you although I realise it's not always easy to ask.

 

I went on to have chemo and while some days were challenging, like Sue, I was able to work part-time and it was nowhere near as horrific an experience as I'd expected. I hope I don't ever have to do it again but I know if I did have to face it then I could. The fear was much worse than the reality for me.

 

You should be offered an holistic needs assessment by your BCN or other support workers. These are organized by Macmillan and are meant to identify any issues surrounding your lifestyle that you may need help with throughout treatment. So, if you really do feel anxious about living alone and going through this then they might be able to make suggestions as to what can be done to help you. 

 

Sue's suggestion about getting organized and preparing in advance is one that I'd echo. I actually ended up doing more cooking and experimenting in the kitchen during treatment because 1) I had time and 2) I wanted to experiment with more healthy options. It really helped focus my mind if I was allowing troubling thoughts to creep in and has had the added benefit of increasing my repertoire in the kitchen.

 

I so totally understand how you are feeling now as this time last year it was me standing in your shoes. You will get through this. It might not be how you planned to spend the next few months of your life but you will do it. 

 

Stick around here and let us know how you get on. One postive thing that has come from my diagnosis is the people I've met, in real life and here via these forums. 

 

Sending you both much strength. 

 

Ruth xx

Sue H-S
Community Champion

Re: Enough is Enough

Hi Brenda77 and Stacey,

You really have my sympathy on the challenges you are facing. Before your treatment starts - operation, possible chemo or radiotherapy - it is a very scary times. Often, when treatment starts we do tend to feel a little better, as we are doing something about our situation.

Living on one's own (btw I do, too) does appear to make things much more challenging. It takes quite a bit of planning to manage - i.e. shopping, pre-cooking meals and freezing them, ensuring everything is in the house you might possibly need when you are not so well. But it can be done.

The operation seems to be the first scary hurdle to get over and fear of not managing post op is understandable. You are likely to spend one or two nights in hospital until you are well enough to be able to go home. You will be able to move about and get on with things, as you usually are able to use your arm/s reasonable well. It can be set up that Community nurses look in on you and also deal with the drain/s you may initially have. You should also get some exercises to do, which one is supposed to start immediately post op  - to ensure that we will be able to use our arm/s to their fullest extent. you may also need some special bras to help you post op, too - https://www.breastcancercare.org.uk/information-support/publication/breast-prostheses-bras-clothes-a...

Should you not be given the relevant chart for the exercises - here is the link - https://www.breastcancercare.org.uk/information-support/publication/exercises-after-breast-cancer-su...

Please do talk to your Breast Care Nurse about your home situation and the concerns you have. They can often help to make your situation easier. It might also be an idea to talk to your GP or the 'head' nurse, which works in your surgery. Again, explaining your situation, there is help available for you.

In my case - I was able to look after myself well, when I got home after my mastectomy and sentinel node biopsy (3 nodes taken). Was well enough to work from home after a week and went back to work after 3 weeks.(Btw I am 57 going on for 58 - so not a spring chicken by any means).

I have to have chemo and am now just post treatment 5 - and I am coping. I still , just about. work from day 11 to 21, before my next treatment. I drive myself to and from chemo treatment. My accompanying medication makes sure that all side effects are at a minimum - in the first 10 days the nurses look in on me for my immune system boosting injections and to flush the PICC line, thorough which chemo is now administered in my case. I use the 'good' week to clean the flat and ensure all is set from a food perspective, etc. for the not so good days, which tend to be days 4-10 post treatment.

I do not have any friends close by and like Brenda77, I do not like bothering the neighbours. Working, although very limited, ishelping me to have some focus, but I do not work in an office with colleagues, so am on my own there, too. 

So it may be an idea to see whether you can try and tackle a specific project, whilst you are going to whatever treatment may be appropriate for you. It may help you to have some focus. And, of course, there will be relevant threads on this forum, too, which will be there to support you.

I think I may have posted this picture before - however I hope it will express to you that there is much hope and much to work towards.

                                         Remember the past.jpg

 

Huge Hugs

Sue xxx

 

 

 

Brenda77
Member

Re: Enough is Enough

Hi Stacey,  Thank you for getting in touch.  My heart has not stopped racing since I got the diagnosis.  I try to sleep but wake about 4 am and just shake.  I am relying on friends and neighbours but they have their own lives and I don't want to be any trouble.  I will let you all know what the surgeon says tomorrow.  At the moment I feel I am in a black tunnel and there is no light at the end.

Lots of love, Brenda xxx

Stacey
Member

Re: Enough is Enough

Hi Brenda,

 

Colour me equally terrified and shakey.  I wake up and night and think about the cancer and my heart starts racing.  I live alone.  My nearest relative, my sister, is 3,000 miles away.  Although friends and sister-in-law have been very supportive it just does not seem enough.  I want what I can't have, a partner who loves me and lives with me is there for me if things go wrong ... mentally of physically.  

 

I too am afraid of living alone and having surgery and possibly chemo.  If I could harness the powers of Dr. Who if I couldn't go back in time I'd time travel forward a year from now when the bulk of any treatment will be over.  

 

So the only thing I can offer you is that what you are feeling is "normal."  Don't be hard on yourself for feeling the way you do now.   

Brenda77
Member

Re: Enough is Enough

Hi Moijan,  Thank you so much for getting back to me.  I have a 2 cm invasive tumour in my right breast and it has been indicated that I will require a mastectomy with nodes.  The right breast problem is the worst and at the forefront of my mind but what I didn't mention initially is that I have also got a small in situ cancer in my left breast and they expect I will need a lumpectomy at the same time as the mastectomy followed by radiotherapy.  I see the surgeon for the first time tomorrow morning and I am now thinking should I have a double mastectomy and get it over with, with no future mammograms on the left breast to think about.  I live alone and have no family in the area and do everything myself at home.  I am now worrying that two mastectomies would be too debilitating initially and I am also concerned in case I am going to be debilitated for the remainder of my life - lifting arms up to cupboards, hoovering etc.  As I mentioned I am also terrified of the chemotherapy in case I am really ill and cannot manage at home.  To add to things, I have had two low grade skin cancers on my face within the past two years and I noticed yesterday that I am developing another one on my nose.  I can't deal with this as well as the breast cancers and won't be able to have surgery on this until the breast situation is over and meanwhile the one on my nose will be betting bigger.  I will talk to the surgeon about all this tomorrow but I am very scared, not sleeping and forcing myself to eat.  The support of people like yourself is helping me enormously because people who have not been through it just don't know what it feels like.  You are all marvellous and I hope I can get your strength.

Lots of love and hugs, Brenda xxxxx

Moijan
Member

Re: Enough is Enough

 

Hi Brenda,

 

thank you for joining in with us and sharing. We have all been in a similar place to where you find yourself now. Fear is probably one of the very worst aspects about having cancer, we all struggle with fear of the unkown as we cant just have a quick look/check inside our bodies and reassure ourselves. Often, its hardest to cope with when we are alone.

 

The words that are used, such as grades, staging, clear margins, etc are also very scary and I found that yes, I wanted to know Everything about my cancer, because not knowing is much worse for me - but also, once I had had things explained and then stressed over 'that', - then gradually, over the past 16 years, I found that, for me, being a stage 3. Or 4 had become less meaningful.

 

At my first diagnosis, I was given the news that 12/13 armpit lymph nodes were positive and cancer had spread outside these into my armpit. My breast tumour was 8x7 cms, with less than a mm clear margin. I had all of that removed and  they told me, I had 75% chance of it coming back within 2 years. I thought id be gone in six months! I prayed for a five year survival, then another 5, and now its been 16.

 

I am currently on chemo again, but am getting really good results...I really didnt want chemo because I was scared about losing control, the unknown again. ..... However,I feel so well on chemo, I almost dont know im on it!  If you need chemo, the chemo nurses will help you through it,  and the bcn is also there for you.

 

I am grateful that there are so many good drugs out there to help us tackle this horrid disease.

how lucky it is that we are being treated at a time when scientists are crackng the codes of how cancer operates, One day cancer will be preventable, or at least controllable and we hear frequently about new drugs!

 

How do i tackle my fear?  when im alone, sometimes I make an appointment a few hours hence to worry as much as I like, and try to keep reminding myself about it, when the monkeys start jumping again. Other times, I have tried drawing or painting my fear, that has also  worked. This forum has latterly been a godsend as there are so many lovely people here, to support us. i have also chatted to the helpline nurses.

 

you will find your own ways to deal with the fear because we are all different. Please let us know how you get on. We are all here for youxxx

 

huggy thoughts, Moijan💜💗🌷🌼

Brenda77
Member

Re: Enough is Enough

Oh Sue, Thank you so much.  I will certainly keep you,posted.  You have been very reassuring.  Lots and lots of love, Brenda xxx

Sue H-S
Community Champion

Re: Enough is Enough

Hi Brenda77,

It is great that you have found this site - there is so much support here for you.It is a great place to share, rant, rave, cry and laugh, as well as having many virtual arms reaching out to you to hug you.

I was diagnosed with an invasive bc, too. Like you I live on my own with my closest relative in Germany. Following my mastectomy, I am now going through chemo with my last 'treatment' on September 1. This will be followed by radiotherapy and hormone treatment for the next 10 years. I am looking forward to many, many years to come, as my prognosis is very good.

It is so understandable that you are so scared. Many times we have the images and limited knowledge of many years ago in our heads, which seems to make things even more scary for us.

Treatments today are so much further advanced and outcomes have improved immensely. The NHS is absolutely brilliant and I could not have received any better treatment, if I would have gone privately.

The next few weeks may well be an absolute rollercoaster for you, as you will have to absorb so much information and have to make some decisions as to your treatment, You already have had a breast care nurse assigned to you. Make good use of her, ask her the questions, which may be in your head - she is there to support you in any way possible.

The process of diagnosis is made up of many parts, and the initial treatment plan may be adjusted post your possible operation. Should you have to have a mastectomy there are some really great options of reconstructive surgery, once all is done. But it may be a challenging emotional rollercoaster, as you go through this stage. Once your treatment plan is in place you are likely to feel much better, as you may get the feeling of control back, which is important to many of us.

Chemo can be challenging, but not as terrible, as one may imagine. It has to be said though, that everyone is likely to react a little different to their relative treatment. But is it managable - even being on your own. I am still managing to work for 10 days of each 3 weekly cycle and am now post cycle 5.

When and if the time comes your local GPs surgery and it's nurses, as well as community nurses are there to ensure all is ok and to support you through this, should you have to. There are also monthly chemo starters threads on this forum, which are absolutely great to support you through this - as others facing the same as you - will go through this at the same time as you. The sharing of feelings and tips is so very helpful. But - one step at a time, you may not have to go through this.

When you see your consultant on Tuesday it might be an idea to make a note of questions you may have before you see him/her - so you remember to ask them. Also to make notes of the information that is being shared with you. Your treatment team is likely to make suggestions of the course of action, which they believe is best for you to achieve the best possible outcome. It is worth keeping in mind that the decision of which route you are going to take - will be yours, not theirs. So making notes may be a great help in you making your decision/s as and when they need to be made.

Initially you may wish to know more about stage, grade and receptors, which the biopsy results should show, as this may aid your understanding of the treatment plan they are likely to suggest to you.

As yo move through the various stages of diagnosis, if you wish - please let us know. 

It will give us the opportunity to support you through and possibly point you into the direction of specific threads, which may help you gather more knowledge and of course much support.

I am so sorry you have to find yourself here - but all of us are here to support and help you as much as possible.

Although easy to say - please do not be too frightened - try and get out - into nature, if possible - drink in the air and breathe deeply - look at the little beautiful things nature has to offer us.It may give you some peace for a little while.

                                         No matter how long.jpg

Please keep posting - we are here for you.

Huge Hug

Sue xxx

 

Brenda77
Member

Re: Enough is Enough

Thank you Jo.  I worry for England and the anxiety is getting too much.  I will certainly keep you informed and hope I can make new friends on this website.  Love Brenda xx

Jobey68
Member

Re: Enough is Enough

Hi Brenda, I'm sorry you have had to join us but a warm welcome any way 😊 The early days of diagnosis are the worst time, there is so much uncertainty and it seems to be endless waiting and waiting but things so get better as you begin to get all the facts and a treatment plan is put in place. Chemo isnt a certainty with breast cancer, I didn't have it , it depends on a lot of factors such as size, stage and grade which they won't know for certain until you have had it removed and tested. Just try and take things one step at a time and not let your mind run away with the what ifs, deal with the facts when you have them, in my experience I spent so much time in a state of utter terror worrying and in reality my op and treatment were quite straight forward and almost 18 months on I'm well and back to normal, we all understand here what you are going through right now and you will find plenty of support across the forum so please keep in touch Xx Jo 

Brenda77
Member

Re: Enough is Enough

I have just found this site.  I am very frightened.  I have just been diagnosed with an invasive cancer in my right breast and DCIS in the left.  Been to the Breast Clinic and have had biopsies and seen Breast Nurse.  Seeing a consultant on Tuesday.  Lump 17-19 MM. in right breast and looks like I may have to have a mastectomy and possibly chemo.   I am not sleeping and cannot stop shaking.  I cannot get chemo out of my mind and am terrified.  I live alone and don't have any family in the area.  I have good friends but I am so frightened.  Would love to hear from someone.

Moijan
Member

Re: Enough is Enough

Yes, lovely Sue, you always put things so very wellxx I find the unknown much more scary than the reality. 

 

i totally agree about the bouncing back, and trying not to stress...after all, stressing doesnt change things..

but sometimes its hard to switch off. My friend once said..try not to be 'continually reading the book' put it back on the shelf sometimes...its hard to do, but I try to make an appointment /a time on the clock, a few hours hence,  for myself when im allowed to sit and worry..and often when that time comes, I dont need it! 

 

as Sue says, you will find peace in time.Stacey. Come and share it with us when it feels too muchxx

 

huggy thoughts

 

Moijan💙💚💛

 

 

Sue H-S
Community Champion

Re: Enough is Enough

Hi Stacey,

I know it is easy to say, but please do not stress too much. I was diagnosed with a lobular invasive, too. Mine was rather large and thankfully I had no lymph node involvement.

My mastectomy was fine - and I recovered well within 3 weeks to go back to work. I am going through chemo - to ensure it does not come back and my prognosis is very good for the future.

You, unfortunately, cannot change your diagnosis and you cannot change whichever treatment options will be the best for you, to have the right outcome. But in time, you will be able to move forward again - take strength in that. You do have a future - try and focus on that, if and when you can.

The fear of the unknown can be paralysing - I certainly understand that - we have to try and beat it, so that it allows us to notice and enjoy the little moments, which can give us so much strength and hope.

Hugs

Sue xxx

Stacey
Member

Re: Enough is Enough

Thanks Moijan.  I do have to keep reminding myself that I am bouncing back and forth between cancer and mourning.  So I am crying because I miss my husband and stressed because of the diagnosis and uncertainty.  Not to mention on Tuesday I go for an EKG after the GP discovered I developed a heart murmur last week.  

 

All that said, I am starting to settle a bit.  Today is the first day I have not felt like a shaking leaf the entire day. 

Moijan
Member

Re: Enough is Enough

Oh Stacey, 

 

i just read that  you were told that Lobular cancer doesnt respond well to chemo...mine is lobular cancer and although i did need a mastectomy (5 by 8cms tumour + 12/13 involved l/n) mine responded well to chemo, Taxotere and I had 10 years before it came back, with help from Letrozole!

 

i now have liver and spine mets which are responding very well to Eribulin. Currently..........

lots of good news there. Maybe the onc wasnt very clear...that happens. i usually take a friend if im expecting bad news and get her to scribe....so much to remember!

 

just be  aware, there is always some time to think over any options you are offered, dont feel pressured to make a quick decision. Also, you can always change your mind...these are two truths I have taken a long time to realise! But well worth bearing in mind.

 

Sue has given you lots of good advice, take some time to see how you feel about all the options available, 

 

do keep posting, let us know how things are going. We are all here for you

ps. We are similar agesxx

 

hugs

 

Moijanxx

Moijan
Member

Re: Enough is Enough

Hi Stacey, still reading your posts and sending you love and positive thoughtsxx

 

When my dad died in May this year...after just 6 months of putting in lots of energy to try keeping him well,  the funeral arranging and trying so hard to get things right took hours/days, there were upsets between  family members, lots of liaison, organising, etc and it all takes energy. 

 

I started my chemo about 4 weeks after and I was in a complete anxiety state, I felt so embarrassed in the i/v suite as I couldnt stop crying. ( I was a nurse in a previous life, pre cancer, and well used to helping others, and being totally in control of my life.)

 

As I had, had my initial diag in 2001. I felt I should have been braver, more seasoned etc, less of a wimp. the nurses were very kind and over the past 10 weeks ive grown to realise that they all have great compassion and understanding and that Its really ok to let my hair down as needed.

 

Just to share in case it helps,..... the week before my first recent Eribulin chemo, I had headaches, cough, sore throat, acute anxiety and neck stiffness, shoulder pains etc. i couldnt understand why the oncol thought I was well enough for chemo!  Anyway, once Id had my first two infusions, all those symptoms went away...I know now they were stress...( at the time..Id felt I was ill)

 

Normally, im able to bounce back emotionally and have a good handle on diverting/parking. all the worries our brains keep focussing on.   I just had to accept that, for the time being I was doing the best I could...thats all any of us can do, 

 

Back to you......you have shown great strength and fortitude, all those years looking after hubby and, then, just when that ends, you yourself get another big whammy. Our pets also are like children to us, my beloved maincoon puss, who looked after me when I first got ill, she died a few years ago......a big loss. So I'm really on the same page regarding your

dogxx

 

Stacey this jumble Will even out.....be really kind to yourself......we often arent, just take time out to hug yourself.  you sound a really resourceful lady and will bounce back.

 

lots of love and hugs......we are all there for you

 

Moijanxx

Sarah04
Member

Re: Enough is Enough

Thinking of you Stacey. Big big hugs x
7oanne
Member

Re: Enough is Enough

Stacey,  Thinking of you today, and sending you a big hug,x

Janey2
Member

Re: Enough is Enough

You will be in my thoughts today x
Stacey
Member

Re: Enough is Enough

Thanks everyone for thinking of me today, the funeral is going to be tough to get through, but I will.

 

I am not taking any nore of the citalopram.  I've only been on 10mg for 4 days but is making me a complete and utter looney.  I am virtually crawling out of my skin from stress.  I'll call the GP tomorrow morning and ask for fluoxitine, which I had before with no side effects apart from a headache for a few days.  

 

I GIANT thank you to everyone for caring.

Sue H-S
Community Champion

Re: Enough is Enough

Stacey,

my thoughts are with you today.

                                      Remember the past.jpg

Hugs

Sue xx

Caroluna
Member

Re: Enough is Enough

Hi

And I'm thinking of you, too, Stacy, hope it helps a bit to know that you are being sent love from women around the country and hope you can draw on the love of those near you to keep going.

Hope you are ok and gradually come out of this stormy place to a calmer place, xxx

lorac170
Member

Re: Enough is Enough

Stacey, 

I just wanted to let you know that I (& many others, I'm sure) will be thinking of you tomorrow. Sending you best wishes at this terribly sad time. All the very best & take care xxx Carol.

Janey2
Member

Re: Enough is Enough

Hi Stacey. Sometimes it would be lovely if this weren't a virtual forum and we could all give you real rather than virtual hug and care. Citalopram will take a couple of weeks to become fully effective and can often make symptoms worse initially. The next few days I am sure will be even more difficult as you face the funeral. Anxiety is a truly horrible thing when at full pelt. I think it would be worth speaking to your GP again. Whilst diazepam or similar, isn't something to take in the long term, you could discuss with them about whether it can support you and give you a bit of respite in the short term. I would ask also for a referral for talking therapy, unless this is something offered through your local breast cancer service. Just having someone anonymous to listen can be so helpful. Thinking of you xx
Sue H-S
Community Champion

Re: Enough is Enough

Hi Stacey,

I am glad that I can support you - you really are having a very difficult time. As you have a very similar diagnosis to myself - sharing knowledge and experiences hopefully will help you to ask the right questions and make an informed joint decision with your treatment team. Please feel free to send me a private message, if you prefer to discuss some things 'off forum'.

In the end - the decisions made now will influence the rest of our lives - and we want it to be happy and healthy!

As you by know by now,I was diagnosed a lobular invasive, which was confirmed, after post op pathology results, as a stage 2b, grade 3, 110mm lobular invasive.

I was so very glad I opted immediately for a skin sparing mastectomy, as it ensured that, what was thought to be 30mm and turned out to be much larger - had completely clear margins and all of it was gone.

As I am smaller busted (36B) it was a good choice of operation for me. I had immediate reconstruction - they even fashioned a nipple out of my breast skin! If the surgeon would have known the true size of the growth, I would have had to wait for my reconstruction at a later date. Although no lymph node involvement, the size and grade made chemotherapy unavoidable. It improves my non recurrance rate over 10 years by 8%.Chemotherapy and radiotheray can affect the implant and it may have to be replaced, once all is done and dusted.

It is understandable that you are concerned about the heart murmur causing issues with your operation. 

May I suggest you call the Breast Cancer Care Nurse, who should have been assigned to you by now.

She/he may be able to put your mind at rest on that subject. You should be able to call them on working days through normal working hours. Leave a message with your concern, should they not be able to answer - they will get back to you as soon as they can.

Your heart may be more likely to beat rapidly and nearly audibly, due to the enormous amount of stress you are currently under. If you can find any stress relieving methods, such as music, a walk in nature, meditation - it would highly likely be of great help to you. It may also be an idea to discuss with your team access to a counselling service. You have so much going on - all of it highly stressful - and at a guess you are trying to keep it all together and very busy, as not to have the moment where you sit down for a longer time, start to think - and all collapses as the reality of it all hits you.

Asking for support and help is not a weakness, quite the opposite - it shows strength in that you want to get on with your life. You just need a 'crutch' for a short period to help you through the most challenging parts.

I certainly appreciate the feeling of everything going along at a nice pace and then the heavens open and dump EVERYTHING on you. I have been and am in a similar situation. It is so hard to handle all of it, when one is also having to deal with a bc diagnosis and all that this entails. I have given up trying to be superwoman - at the moment I deal with one thing at a time and when I am in the right place to deal with it. However it appears, that this may not be a choice you have right now. 

I hope your dog will be ok - I have a cat and he has been and is my absolute rock through all of this.

You have challenging days ahead of you and the love of your family will hopefully give you all of the warmth and support you need at this time.

Huge Hug

Sue xxx

 

  

Stacey
Member

Re: Enough is Enough

Hi Sue,

 

Thanks for taking all that time to respond.  My cancer is definitely invasive, the radiologist pointed out the little strands.  The biopsy said it was Grade 2, although I know that can change. 

 

And now since the GP found a hear murmur and I had a rapid heartbeat I worry I will not be able to have surgery at all ... arghhh.  My specialty subject is worry.

 

I am definitely hoping the citalopram I started on this past Friday starts kicking in sooner than normal.  My anxiety is through the roof.  So much is being dumped on me at once.  Including the last three weeks one of my dogs not being well and going through all sorts of tests.  She's nearly 14 years old and has been my shadow.  I'm totally gutted.  

 

It is just so bizaree that up until the point my husband died my life seemed to be normal ... and then it's as if some portal in the universe opened to dump all the rubbish on me.  

 

I had little sleep last night and am now sipping coffee before going upstairs to get dressed and wait for my sister and brother-in-law to arrive.  It's only a short stay for my husband's funeral Tuesday, but having people around me now that love me should help.  

 

Thanks again, much appreciated.

Sue H-S
Community Champion

Re: Enough is Enough

Hi Stacey,

not being given options with regards to surgery is something I have, as yet, not come across. Sometimes, of course, there may only be one specific option, due to size, position and type of cancer and of course your breast size.

Unfortunately the process of diagnosis can be very challenging, with information changing, the more test results come through. These tests do take their time and are the basis from which further decisions are likely to be made. Please be assured - all is being done to make sure the right treatment is being given to you for the best possible outcome. All hospitals work to the NICE guidelines, which give specific time spans in which things have to be dealt with, especially when a cancer diagnosis is being made.

As to lobular - one of the question you may have already got the answer to is what type of lobular it is. In situ or invasive. This should usually be visible, as it was with me, on the ultrasound and/or MRI scan. Sometimes it may look like an in situ whilst in actual fact it may be an invasive. The difference is that an in situ is contained within a lump, whilst the invasive has started to grow spiderlike tentacles, which sometimes are only a cell strand wide. An MRI may not show up strands, as they can be so 'narrow' and much will also depend on whether you have 'dense' breast tissue. A lobular in situ may not respond to pre op chemo treatment, I am not sure about that. However, once removed chemo is very effective in ensuring that any escapee cells, should there be any - are dealt with. And it is very effective.

If chemo becomes a possibility after your operation and if you should opt for a mastectomy -  it may not be possible to have a reconstruction at the time of your operation. An implant, if that is your choice (there are several choices) can be affected by chemotherapy and radiotherapy - should that be one or both of the treatment choices.

Information via these links may be of help to you -

http://www.cancerresearchuk.org/about-cancer/type/breast-cancer/treatment/surgery/types-of-breast-ca...

https://www.breastcancercare.org.uk/information-support/publication/breast-reconstruction-bcc7 can be downloaded

https://www.breastcancercare.org.uk/information-support/publication/your-operation-recovery-bcc151  can be downloaded

When you have your operation they are highly likely to do a sentinel node biopsy, which means they will remove the first cluster of your lymphnodes, closest to your affected breast. These nodes will be checked, together with the removed breast tissue, and the results will be in the pathology report. Those details usually become available to your treatment team and you 2-3 weeks after the operation. It may also resolve the mystery of your enlarged lymphnode with a bit of luck.

Depending on those results the final treatment decisions will be made in conjunction with you.

In rare cases, if not enough clear margin has been achieved when having a lumpectomy or wide area exision - a further operation may be required to ensure clear margins.

I do hope you find above of some help and it that it may enable you to ask relevant questions as you move through this process to ensure you are happy that the best possible is being done.

Huge hug

Sue xx

 

Stacey
Member

Re: Enough is Enough

Hi Charys,

 

Like you, I hadn't visted a doctor in many years.  All I did was show up or do whatever I need to do when I received NHS invites for tests or screening.  

 

I am sure I am suffering from constant anxiety at this point.  Until the GP yesterday said I had a murmur and rapid heart beat I pretty much never noticed anything heartwise.  In fact, I read my own pulse rate with my husband's oximeter less than four weeks ago and it was normal.  I was so anxious at the GP's office I was nearly shaking, so of course I had a rapid heart beat.  Logic is not working though to calm me down.  I can "hear" my heart beat and sense my pulse racing constantly now.

 

Yesterday when the GP gave me the Citalopram she said it can make you more anxious to start ... my response was, "how would I know if I was MORE anxious."  Well, maybe that's part of it too.

 

My sister and brother-in-law are arriving tomorrow morning for my husband's funeral on Tuesday,  I hope they will help calm me down before my head explodes! 

Stacey
Member

Re: Enough is Enough

Hi Sue,

 

I haven't been given any surgery options, other than the surgeon ruling out a wide area exision.  The cancer looks about 5 cm on the mammo and I know the MRI can show more involvement, as can biopsy after surgery.  I also have a lymph node under my arm that is enlarged, it was enlarged at my scan three years ago and has not changed in size with this last one.  The biopsy on it didn't show any cancer, but there seems to be some mystery tissue behind it for which the findings are inconclusive.  The Jarvis lady doctor said it was breast tissue, but the surgeon read out the pathology and the net of the jargon seems to be they don't know what it is.  

 

What I want is one surgery, period. And then whatever else is necessary.   I have given up the past 8 years of my life to caring for my husband, who I miss terribly.  What I want is to get rid of the cancer as quickly as possible and get on with however short or long the rest of my life turns out to be.  I had my screening scan on 4 July and this all seems to be taking so long to get sorted.  The only treatment plans so far is the MRI, probably second look sonogram and biopsies.  So it's waiting, wating and waiting.

Charys
Community Champion

Re: Enough is Enough

Stacey you really are having such a trying time, to say the least. I think it's rather common for people to find out during their BC diagnosis and treatment that they have some other health issues. The medics start prodding, checking and testing things and perhaps pick up on things that otherwise wouldn't have been found and diagnosed. I only had my last raft of blood tests taken yesterday, and honestly wouldn't be surprised if they came back showing something else.( not cancer related)  The thing is, soemtimes other minor medical problems come slowly over years, unless they become major problems we just get used to them or perhaps don't even notice them! So suddenly when thrown into this situation, it's not surprising that things start being picked up. I've personally not visited the doctor for a decade before the BC stuff. I know it seems dreadfully hard right now, and there is SO much to worry about, but it will all come together and straighten out x

Sue H-S
Community Champion

Re: Enough is Enough

Hi Stacey,

I am so sorry, that the details you are being told seem, to a degree, be confusing and contradictory. It is so understandable that you are really struggling with this all.

If you are able to and wish to - perhaps send me a private message, so I might support you with some thoughts 'off line'? I shall try my utmost to throw some light on things, which may help your understanding and options.

I am not a medical person, but having been diagnosed with a lobular invasive and now nearly finishing chemo I am happy to share my experiences and knowledge I gained, with you.

Like you - I am post menopause. I was given Letrozole before my operation and will be back on it for 10 years, once my active treatment is complete. 

It can be disconcerting that other medical issues rear their head, when we are already struggling with our BC diagnosis. However, we would never know about them, even if we would have regularly attended a GP, as many of them do not show any symptoms. I have gone through a complete 'MOT' check and some other bits have come up, such as a kidney problem and am waiting to see a urologist to get it resolved. Initially worried, whether I could have chemo or whether I am able to tolerate it - as kidneys can be compromised by the treatment - they proceeded all the same. Happy to say all is fine and that the regular blood tests are showing that my kindneys are doing their job well.

The positive is - that when all is said and done - we will be aware of any other health issues we may have and can deal with them in the right manner and timeframe to make sure we have a long and healthy life ahead of us.

The MRI is a routine pre-op scan, which is necessary for the sureon to see - as much as possible - where and how he/she has to operate. Depending on your type of lobular bc - it may not be the finite result, as to size though. If it comes back larger, than initially thought - which can be quite common, please do not panick. I realise this is easier said than done. However, having been through those stages and having experienced this ......

Have you been given any options with regard to your type of operation? Do you know whether there is a preferred route of treatment/operation from your treatment team?

Huge Hugs

Sue xxx 

livvy
Member

Re: Enough is Enough

We all need reassurance Stacey at some point or another,and you took the time out to reply to me yesterday and I'm grateful for that. I will be thinking about you. Please take extra care of yourself. Xx
Stacey
Member

Re: Enough is Enough

  The ECG will be at my doctor's surgery, i could have had it 

Monday but family are flying in for the funeral so now have to wait until the 30th, assuming that does not conflict with MRI.  It probably is routine pre-op, so I will have it one way or another.  

 

You are going through a stressful time too, so I do appreciate your kind reply.

 

livvy
Member

Re: Enough is Enough

Hi Stacey, firstly (((BIG HUGS))) cant really offer any advice to your heart murmur but I'm sure your g.p will contact the breast clinic to advise them about it,when I had my pre op assessment I was given an ECG I'm sure this is standard but don't quote me on that its just what I had as well as as blood tests etc,I have grade 2 lobular on my left and orginally lobular on my right and my treatment was planned for a WLE and radiotherapy but as it turned out my right was actually grade 3 IDC only then was chemo mentioned which I'm unable to have anyway as you know you kindly replied to my thread yesterday. All I wanted to say really was, you are going through an horrific time at the moment words cant even comprehend.you have so much to deal with without something else been thrown a you. What the lovely sue said too me yesterday was let your team do there work and all the planning they need to do theres treatment for everything and different ways to do it. And you could also ring the helpline who I'm sure know more then me and have the appropriate answers to put your mind at ease. And I hope the anti depressants do there job quickly and you start feeling less stressed. And please feel free to rant and whine all you like this is what this forums all about everything your going through and having to cope with at the moment.and BC is difficult in its self to cope with out everything else you have to deal with on top if it! Take care and I hope things get sorted for you soon big hugs. Xx
Stacey
Member

Enough is Enough

I met with my surgeon at the Royal Surrey on Wednesday.  Unlike the doctor at the Jarvis Breast Centre, she told me I would need either a masectomy or breast conserving surgery; this based on my 3D mammograms.  The Jarvis doctor was all reassuring from the start that I would only need a wide area exision and radiation treatment, although I knew it might change it was something to hope for at least.  I am really annoyed that she was so quick to tell me several times something which was untrue from the start.  

 

I am now waiting for an appointment for an MRI, blood test results for liver/kidney function and something else I forget, I think the surgeon said it has to do with whether or not they can inject me with the dye before the MRI.  Probably more sonograms and biospy after MRI, surgery most likely end of September.

 

The surgeon said that Lobular cancer does not respond well to chemo and she was not going to refer me to an oncologist.  I don't get it.  I know many women with Lobular have chemo.  The breast cancer nurse later said she didn't rule it in or out, but that's not what I heard.  

 

On top of all this I saw the GP this morning.  Bewteen my cancer diagnosis and my husband's death I am struggling and went primarily for antidepressants.  Plus, the past six weeks I've developed acid reflux, probably from stress, and a tickle in my throat which makes me cough to go along with it.  The surgeon started me on Letrozole so I asked for Citalopram given it's been shown to reduce hot flushes.  Not that I know if I will get them having only taken two Letrozole tablets so far .. but why not?

 

The GP did my blood pressure, which as a surpise to me was normal.  My pulse was racing, no surprise because I was practically shaking with stress.  However, in listening to my chest for my cough she detected a heart murmur and I'm not scheduled for an ECG.  So, I've got that little add-on to my growing list of things to worry about.  With caring for my husband I have not seen a doctor for a check up or anything in well over 8 years and I'm 64 so things do crop up as you age ... but now I am scared that the murmur will somehow effect surgery.  Good think one of the things I've done this week is start on getting a new will made up.

 

Sorry, I am ranting and whining, but I am finding this a real difficult time.