Firstlly I would like to put your mind at rest with respect to cost cuts. ANyone, who is diagnosed with cancer will be given the best possible proven treatment. They will not stinge on suporting drugs, should they be required.
Secondly, it may be an idea to give your Breast Care Nurse a call and have a piece of paper ready to make some notes. Your Breast Care Nurse has access to your records and your treatment team. She/he might have to ring you back, as they may need to collate all of the information to the questions you have.
Asking for the exact biopsy results, such at - Type of breast cancer, stage of breast cancer, receptors of the cancer - will be useful information to have - to help you find out about and feel more comfortable with the treatment, which is to follow. You can then also ask he Breast Cancer Care Nurse to help you understand what each result means. Should you still be confused I shall help, if you wish, as much as I can - so you can gain better knowledge.
To help understand FEC-T chemotherapy - this link may be of help -
I think you are able to download these publications to your computer/tablet - so you can read them at your leisure. They will answer a lot of questions you may have.
You may also ask to have the relevant paperwork for a prescription charge exemption certificate - as you will not have to pay rescription charges for the next few years, due to your diagnosis.
AS you are starting chemo next week - please feel free to join us on the July Starters chemotherapy thread -
This is the link to one of the pages - where you can find information with regard to preparing for chemo -
Good luck , this is such a good supportive forum which I was not aware of the first time I had cancer as it would been really helpful , don't be afraid of asking questions , as chemo consultant and team are all lovely and answered my concerns the first time . Wishing you all best , and as per previous response plenty of fluids and a healthy diet and resting helps xxx
i was given FEC chemo the first time , and there are side effects which doctors explain . I had no choice as needed the Tumor to shrink before surgery , consultant explained they were very good . As this a second time now I went with 20 questions including type of cancer , location and grade . I had a strong minded friend with me and it helped me as a second pair of ears is always helpful and than you know . I have now been advised its my decision on wether I have chemo ( they are saying docetaxel ) or not as this my second hit and need to balance side effects of chemo versus quality of life due long term effects and impact on percentage life expectancy . Looking at data it's only marginal so am thinking through which I go . Again I would be given tamoxifen, which I understand has side effects , I had arimidix last time for five years . Radiotherapy is being considered as was also given this the first time . My cancer this time is grade 3 it was grade 2 last time . This information can be asked for , it can mind blowing but I feel in control when I ask for information . I do not how I will react to tamoxifen xxx
having become a vegetarian/vegan was likely a very good choice - there is some anecdotal evidence that is reduces the risks of some cancers.
You might have read this - if not - http://www.veganhealth.org/articles/cancer
So you really have done all you can to stay healthy. My mother, became a vegetarian with inclusion of dairy after her diagnosis and treatment about 20 years ago. She is still here - and has had, so far no reocurrance.
There is advice now for ER positive women to avoid any Soya supplements - and a suggestion to avoid too much Soya in the diet. However solid research with respect to including Soya in your general diet is still a little sketchy. By all accounts ist does depend very much on the individual.
Please do not blame yourself -
Thank you Jill , it does feel like **bleep** / bad luck . I am going to phone other insurance companies after I know details of chemo .
Thank you sue , that was useful , I am 59 years old and became a vegan after the first cancer , dairy free and only introduced diary last year due to health issues . Being a vegetarian / vegan I thought it would help . But I suppose it's what it is ,
thank you will pick thread .
I am so sorry to hear that you have to go through all of this again. I am not surprised that you are really struggling with this.
It has to be said that treatment has come a long way, even from 8 years ago, so hopefully it may now get knocked on the head.
I do not know your age, so some of my comments may not be relevant to you. In nowadays many women are on hormone blocking therapy for 10 years, rather than 5 - but much also depends on the age. I have already been told, that although past menopause (came rather early) I will be on it for 10 years.
Mind you, by what I have read the drug you were given would usually prescribed for women post menopause.
Estrogen occurs naturally in so many foods we eat (called phyto estrogens sometimes) and research is only just starting to be solid enough to be able to say, which specific things ER positive women should avoid. A high fat diet, high BMI may also not be helpful.
Chemotherapy destroys the rouge cells we have at that time. Unfortunately - some of our cells have the knack to turn 'rogue' again at some point in the future. None of us have the guarantee, that once having gone through treatment - it won't come back.
You are not to blame for this - please do not beat yourself up. Unfortunately no one has control over what our cells get up to and when and why they decide to become nasty again.
My guess is that your chemotherapy is possibly starting in August, so please look out for the August chemo therapy starters thread. You may wish to join it - it will nne a great place to be - to rant, cry, share, get support and have the odd laugh, too. There is much support for you here.
Should things really get on top of you - call your Breast Cancer Nurse to perhaps get a referal for some councelling or call the helpline on this forum - 0808 800 6000 they may be able to put you in rouch with someone, who is going through the same challenge as yourself.
To explore how the monthly chemotherapy threads work - here is a link to the current July one
and here is a thread you may wish to explore in depth to help you with ideas through chemo -
Hope some of my comments are of help.
I have just been introduced to this s forum following by recent reoccurrence of breast cancer after 8 years of being clear . Such a shock as was given all clear and arimidix stopped after 5 years . Last mammogram in 2014 . So following biospsy and now a mastectomy it's been confirmed that I had 2 x 15 MM. lumps , I am ER positive and grade 3 cancer .Feeling so out of control as not sure why , what causes excessive estrogen and why this happened as had chemotherapy followed by surgery (lymph nodes removed with lumpectomy ) and radiotherapy the first time . Been advised will have to same , waiting for oncology appointment .
I feel like **bleep** as all plans I had made this year are on hold including a holiday in September which has been paid for and now insurance company are saying they won't cover me !
Hi - 2 days before my first surgery my breast was hurting like crazy.
I sort of knew it might be anxiety, but I ended up calling the macmillan helpline (it was already past 5 and the BCC line was closed) and they told me to call NHS111 - I didn't, I was already feeling silly about it.
I wrote to my key nurse and the next day she confirmed it was perfectly normal, and it was all due to nerves and anxiety about the surgery.
So don't worry too much 🙂
Get it out - as much as you like - ii will help. I can very much understand the feeling of losing control and feeling vulnerable. I did have a rant or two and some bad days, where I just could not stop crying - mostly out of sheer frustration, rather than anything else. And learning to let go and trust in life - was quite liberating for me. Still don't like it though, lol.
And btw - you are not ill or unwell......you just have a very unwelcome visitor at the moment, whom you are trying to refuse residency......
It must be quite challenging having a friend, who is fighting cancer, too. You may inevitably feel that you may be there soon, too. Different cancers though, have different outcomes - so please take comfort in that.
Treatments have come such a long way for breast cancer, as it is now the most common cancer in the UK. 1in 8 of us will currently be diagnosed in our life time.
Blogging may be a good idea - a good friend I made, here on these threads - also blogs https://gettingabreastofthesituation.wordpress.com/about/ it is much fun to read!
That seems familiar - as the biopsy will have been taken from the lump itself. Although the biopsy was a fortnight ago - this is likely the reason. I am sure they will put your mind at rest with regards to that.
Are you able to share your biopsy results?
Good morning Treeze,
Although is is worrying, there is no need to be overly concerned. It could be because of the biopsy, which may have been taken. A couple of paracetomol should be able to help you with that one.
It is strange, many start to experience various pains in various parts of our bodies, post diagnosis and it can be a bit scary.
My breast became quite sore, too - and I took comfort in that whatever was in it - would not be there much longer, as I had my op before starting chemo.
When you say you have your first proper appointment tomorrow - which appointment is is?
Treeze re hair, I'm right with you on that one. It really was the worst bit for me & it takes a while to grow back. I did the ice cap, not that bad for me & I had 13 chemos, so I never had to see myself bald, but I still lost 50% of my hair & cried like a baby when it started coming out (day 16-20 after FEC for most of us). The only words of comfort I can offer are that although EVERYONE on our thread shed some tears, the ladies who went bald did say they got used to it very quickly. They didn't have the endless hair stress we did (will it go/won't it, how often should I wash it, greasy hair (yes you'll do anything to keep it) & no styling whatsoever). If you love your hair why not give the ice caps a try? Top tips are: get a machine if there is one, take cocodamol an hour before it goes on, put conditioning oil on before they put it on, drink hot drink during the brain freeze, which lasts approx 10 mins. After that your skin's numb & it's ok. You won't know unless you try it. xx
Treeze sorry to hear you are going down the chemo route. I think I would have been fine on my own except the evening after the first FEC, when you're not sure what's going to happen. If you can get someone to at least to collect you (I believe most hospitals have volunteer drivers if you have no one available) & stay with you that night it would be a good thing I think. The night before chemo is very nerve wracking, sort of fear of the Unknown, but the actual giving of it is not that bad once the cannula is in. The nurse usually sits with you throughout the first one & you have the opportunity to ask questions. Mine told me all about her love life & experiences at a dating agency. By the end of chemo she was moving in with a man she'd met ... Yep that's how long it takes, then a little while longer after to recover. Mentally, you will feel a lot better once chemo gets going because you have a plan & you move into 'getting through it' mode. Join the chemo thread for July (if you haven't already), drink 2/3 litres water the day before, day of & day after chemo. It makes a HUGE difference to the side effects. All the very best. Big hug coming your way. xx
Good morning Treeze,
So sorry to hear that the results were not quite as you expected and understand your feelings and thoughts very well.
It is challenging to get ones head around that life has to change for a time, so one can do all possible to deal with such a diagnosis. Carpet pulled from underneath one's feet - comes to mind.So many thoughts and feelings to deal with - on top of everything else.
We are here to support you through this journey at every step and every step at a time.
All the decisions, which have to be made - will be yours. Your Breast Cancer Nurse will become your anchor throughout the whole journey, as she/he should have access to your relevant treatment team. Any questions you may have at any time - they should get back to you, usually within a day - to answer them.
You are never - really on your own - although people are not with you all the time physically.
I am on my own - going through chemo at the moment and still working full time 2 weeks out of three.
It does give so much focus and is really helpful.
You may wish to explore a few threads, when you are ready to - as to Cold Cap, chemo preparation and monthly chemo threads. Here are the links to make it a little easier
This is the thread for all chemo starters in July and there will be one, in due course, for August starters, too.
Once you know your chemo regime, which still needs to be put into place, it will be easier to judge with regard to working and it may depend on the work you do, too. The regime depends on your diagnosis. Just to help you get a rough idea - Mostly chemotherapy is given in 21 day cycles and up to 6 cycles.
You are likely to be given steroid tablets on the day and 3 following days to help your body cope with the treatment. From day 3 to day 10 of the cycle you may feel more tired and fatigued, but then, when your body makes new red and white blood cells and platelets, you are likely to start feeling much better for days 11-20, with day 21 being a treatment day again. In days 3-10 your risk of any type of infection is raised and it may be prudent to stay away from any environment, where you could pick up something.
The fatigue/tiredness is often a cumulative side effect - so as you move through your cycles days 3-10 may become more challenging to achieve 'business as usual'. It has to be said that chemo affects most of us in very individual ways. The fist cycle is often a good indicator as to the individual side effects we are likely to experience throughout. The treatment team is absolutely fabulous at giving us additional medications and adjusting them to keep side effects to a minimum and as manageable as possible.
I have been able to arrange my chemo treatment to be on a Thursday afternoon to give me the best possible way of dealing with the cycle and working. On the Friday,following treatment, I am still fully functioning - then I have the weekend, still on steroids - and the following week I have been working from home - with the weekend for resting, before going back full time for the following two weeks.
Now - after cycle 3 I am taking the week post treatment off, as the cumulative fatigue has set in with me, but I am still able to go back full time after that.
There are some other considerations as to work - and when you are able to please feel free to send me a private message, so I can support you with that in more detail.
Hi Treeze, gutting news but there is a lot that can be done to support and you are now in the best hands. I utterly get about the hair loss; I've been having bright red hair for a few years now (with dark roots) and it's my distinctive feature. As I normally have my hair done again around this time of year, realising about my hair going to go was one the first things that made me cry.
im definitely going to try and cold cap, but if I need to bite the bullet and have it all shaved off before regrouping and doing it next year, then will do that.
take your time and post here when you need. We're all supporting each other xxx
So sorry about your news
I remember staring at my hair in the mirror crying my eyes out when I first got my diagnosis so I know how you feel.
The cold cap worked very well for me and several other ladies I have met along the way, so don't give up on it just yet
Wondering how you are today......HUGE HUG for you.
Please let us know how you get on, if you wish to share. And ask any questions you may have.
We might not be medical persons, but we can share our individual experiences and it may help you understand some of the things better.
At a guess you may also have had a Breast Cancer Care nurse assigned to you.
I am on my own, too - I got diagnosed 3 weeks before taking up a new job - I found her help and support invaluable. Being able to talk through my options, due to my absolute need to work - and how to manage the relevant treatments, whilst working - has been a absolutely brilliant. She was able to take information back to the treatment team - and we all made the relevant decision together to enable me to work and support myself. And I am still working post mastectomy and immediate reconstruction (small sized) and now half way through chemotherapy.
There is much that can be done from the point of benefits, should you not be able to continue with some of your work.
If this is of concern to you you may wish to explore the Macmillan site -
I am a nurse and deal with bad news frequently
My breast lump popped up overnight last November , I was so sure all was ok due to a casual throw away remark by the doc in ultrasound that I trotted in without my husband to find I had grade 3 breast cancer
I didn't take a word in but fortunately the BCN gave me the excellent breast cancer care pack there and then, writing all the relevant information down for me as a starter
Size does often matter- my 36a/b gave me a no choice mastectomy, but a friend had chemo first then lumpectomy. We are all different. But it all gets easier to understand as we go along.
Hi Jill thanks. We had a 2 week holiday in fuerteventura after my node clearance and before rads and we've booked again for end of October. I'm being referred back to breast clinic to discuss implant as next port of call. That will be after rads review in 4 to 6 weeks. I've also been asked if I will take part in a clinical trial which I have agreed to do. As im tnbc I'll give anything a whirl lol.xxx
Hi Teresa so sorry you've found yourself on the forum but we're all here for you.As for your question on the process of treatment were all slightly different. I was diagnosed with triple neg breast cancer with 5cm lump on 2nd September 15 had right mastectomy 9th October. End of November to 1st April FEC-T chemo. I had lymph nodes involved so had them cleared end of April followed by 15 radiotherapy sessions with the last one being tomorrow. It can be tough in parts but it's all doable. I really hope you're news will be good news but if not you'll be surprised how tough you will be. I always say this crap takes a year out of your life but we come out the other side. Treatments are excellent nowadays you'll be fine ducky. Ask anyone anything you need to know.xxx
Hi treeze, if you are going to the appointment on your own, it might be an idea to ask if you can record the consultation on your phone, a lot of health care professionals are happy with this, but obviously their consent is needed first.
So sorry you find yourself here, the initial diagnosis stage is always the worst, but does get better once all the investigations are done & your treatment plan is in place.
Like you, I found telling my 82 & 89 year old parents the worst part so I did this after I knew what the treatment plan was & they were great about it which was a relief, obviously, you will do what you feel is best.
when coming raw and unexpected to this news it can feel overwhelming, but please know there are people who can help - an online community can be really supportive, as can the phone lines. When even part of your work is about caring for others the practicalities of managing that can be a real challenge. Talk to Macmillan definitely about the money side of things.
people will be here with hugs and a space to vent and ask questions. I've already found it invaluable to have this space to talk and ask questions. (I was diagnosed Friday and know and understand so little of what the hell is going on with my body).
Hi Theresa I'm really very sorry it looks likely that you will find yourself in the BC club along wth the rest of us. It's a really hard thing, waiting for results & your treatment plan. I was exactly the same as you, 100% certain it was just a cyst, because I've had them before, & then bang those dreaded words directed at me. It didn't feel real & I was totally numb. We walked out of the hospital & said 'whatever do we do now?'. When we got home we were in shock & my husband kept saying 'what are we supposed to do?', well of course there's nothing you can do, but wait, so I made him cut the lawn whilst I got on the blower to my closest friends. I'm pleased you have shared your news, especially if you live alone. It's very easy for your mind to go into overdrive whilst it tries to make sense of it all. You will calm down a little, so please be assured of that. Do you know any people who have had it? If not, try & get people to introduce you by e-mail if they know people who have. Some of the most useful e-mails I got were from 4 friends of friends, who reassured me that I would get through this, not nice at all, but manageable. It enabled me to ask questions only those who have been through it would be able to answer, including one with my exact diagnosis (you get with biopsy results & then confirmed after surgery) who was 15 years post her experience. Big hugs. Ask us anything you like, we all support each other. Xx