Hiya and thank you for your response.
Well it appears that I made the right decision to have the mastectomy as they discovered I had 3 tumours ( lobular) and also had it in 8 lymph nodes.
I am pre menopause so that will by why I was not offered the Letrozole. My BC is oestrogen positive so I’ll be going on hormone treatment after my chemo
Ive just gotta have a full body scan, then will be cracking on with the chemo
I am so sorry you find yourself here. You have had a mastectomy and it is done, don't try and second guess yourself you have to cope with quite enough as it is, it was the right decision for you.
Letrozole lowers the levels of the female sex hormone oestrogen in the body. Oestrogen stimulates some breast cancers to grow. These breast cancers are called hormone sensitive or hormone receptor positive. Letrozole can stop or slow the growth of these cancers. It is only given I believe to women who have gone through the menopause.
It can be a difficult drug to take and also the different generic ones can cause different side effects. The one called cipla was the worst one for me i felt like a zombie, I am now on the accord and it is a lot better. When you go to the chemist they just give you the one they have and i had quite a trouble getting accord they insisted they were all the same, trust me they are not i then took my prescription to boots who had accord in. you have to experiment to find the one with the least side effects for you. I have read that a lot of women don't like the cipla. I had been on HRT for years which suited me very well, but now i had to come off it it was terrifying. I take supplements for the joint pain, I go to the gym 3 times a week and cbd oil is a life saver. Quite a few go off of the letrozole which is fine for them. If it is going to save my life. I will persevere and instead of stopping i have found things to help with the side effects.
The best way with cbd oil is to email the realm of caring website in america which is a non-profit organisation with researcher’s doctors and lots more to help. When you go onto the web site there is a box that comes up right hand side bottom, it is best to fill that in, you get a quicker response than if you email. You must tell them what type of BC you have if it is oestrogen positive/negative what grade stage if you know it and anything else which would be helpful to them. They will then email back with advice. The ones they recommend are very expensive. But if you go onto CBD Users UK site and join there, tell them what ROC have recommended and they will tell you an alternative that is the same here in the UK. I wouldn't advise you to take any specific one as cancer is very complex and you need the proper advice and if you have oestrogen positive you want one with very low or none THC
All I know is it helps me enormously i feel more like my old self. I do have bad days though but i did before.
My philosophy is to do all the conventional treatment i can, then throw at it anything else that may help. I have also been to see a very good homoeopathist so will be taking those remedies too. Hope that helps you.
Be strong you will get through this
I have invasive lobular cancer and it is also in my lymph nodes. There were also a few areas of concern, but not yet cancer. I was advised that the best option for me, was to have the mastectomy as there was no guarantee that the areas of concern would not develop into cancer.
I had my mastectomy 2 weeks ago, but reading all the posts on here, I’m concerned that it may have not been the right decision.
what is Letrozole and what does it do?
I see you are using CBD oil, would you mind me asking about the benefits of this, as it’s something I am considering
good luck for today, i sent best wishes last night but didn't seem to go through
i will be thinking of you take care
Love and hugs
Good luck for today - hope it all goes well, I will be thinking about you xx
My BCN was on the phone first thing - she was on holiday last week - so she will be pushing things forward then I'll see what my options are. Just need to be a bit patient.... xx
I totally understand, I’m sending you a huge hug 🤗. As I can appreciate that this is very difficult. I’m glad that you liked the programme HEAL too.
I bet your outfit looks looks amazing and it will on you too.
The wait is definitely very frustrating, hopefully your mind will be at rest when you call tomorrow.
I hope the rest of your Sunday was nice and lazy. I’m all geared up for my chemo tomorrow! I brought all my bits and cooked a nice lentil soup. Alderney has recommended celery juice, so I will make that too.
I will let you know how my first day goes tomorrow xx
My MRI scan was delayed as the scanner broke and I was really anxious about the delay however I was advised from a few different sources that a few days will not make a difference in the grand scheme of things, all the same I hope you make some progress when you speak with your BCN and get your appointment soon so that you can move forward with your treatment plan.
Sorry I haven't been on for a few days. Hope you are well?
I did watch Heal on Netflix yesterday morning and I loved it - thank you for that. I've really taken a lot of positives from it. I went out with my partner yesterday too, it was a beautiful day. We walked 14k taking in a few hills, i was exhausted last night, but felt the benefit of all the fresh air.
My daughter is getting married in 76 days another reason for all my anxieties and 'how can this be happening to me". I also got my outfit on Friday, went to a little boutique near us, thats just won an award for "best mother of the bride retailer". I seen one that was just perfect, just what I had in mind, my daughter was with me and we both just loved it.
I did google Maggies centres and there isn't one near me but there is one in a hostpital that i may have to go to later on for treatment. I will look into it a bit more.
I also still haven't got my next appointment in for biopsy? My last appointment was my MRI that was 2 weeks tomorrow? I'll give my nurse a ring tomorrow morning and try push it on.
I am going to have a lazy Sunday, listening to what my body is telling me after being so busy the last 3 days.....they have gone quick and thats a bonus.
How are you today?
If you have Netflix, I would say to watch a documentary called Heal. I found it really helped me and changed my mindset.
My days are not all chirpy, but I try and stay in control of what I can, so my diet. I meditate to help control my anxieties. Most importantly, we are all here for you.
I feel youre doing fantastic, everyone has their down days even before the diagnosis.
Have you got a maggies centre near you? Xx
Hi Lady Baguette,
I hope you are well today.
Thank you for the information, I will definitely look at the website.
Love and hugs too xx
Hi Mac 51
I know exactly what you mean about a week in the life of you. I went to the BCU for my scan the day I was going to the airport hotel for my holiday, thought it would be just a quick in & out job done. how wrong was I (dare I tell you I went in rollers and a headscarf so i would look nice for my trip my husband was embarrassed I thought it was funny wasn't my fault my scan was the day I went away) 4 hours later after a mammogram then an ultra sound then a biopsy I was feeling totally different I asked to see the professor and asked him what he thought he said to wait and see. I said you are a professor you have a lot of experience what do you think, he said if I said yes it could be no and if I said no it could be yes, but I would be concerned and suspicious, (I liked him he was nice I didn't like the one who gave me my results) so then I knew. Then can you believe it was the next morning sat in the departure lounge an hour before take off when the travel insurance rang me to say I was still covered. I then had a lovely holiday with some very low moments gin helped a lot and it felt like 2 months not 2 weeks.
When I went for my results on the Monday I was told mastectomy thats it, no options nothing I asked to look at the report and she asked me if I was a pathologist and I said no does that matter as an ex nurse I understood about half of it cause I was quite distressed. Then I asked for a copy of it and she said no, so I reminded her that the NHS gives me the right to any information that I require, apparently I had to fill in a form for it so out of cussedness I did just that. Then I told her i was going for a second opinion not of the diagnosis of the treatment.
We all have a right to know as much or as little as we wish to know and they can't refuse
I came out of the hospital and felt totally out of control, fortunately whilst on hols I had a lot of time for research so rang the secretary of the consultant I wanted to see and left a message for her to ring me, she rang me the next morning and fortunately I managed to persuade her to fit me in on the Wednesday morning. As i said previously I had CT scan which was clear except the lumps and started Letrozole that day.
I feel so much better now we have a plan and feel more in control, but after saying that when i went in today i had a lot of questions ( I am sure my consultant thinks i'm nuts) which he was very happy to answer. He may be a very good consultant and I trust him but he is not a god and I don't revere him, he is a man and human and humans however good make mistakes.
I know some people don't want to know any information and i think that is fine, i am not one of them I need to know every little detail, when we went in today my husband had a box file with all my research and he said by the time she has finished I will be wheeling in a filing cabinet. My questions were all written down so I wouldn't forget. I wanted to know every step from surgery to radio and whatever I needed to know. He did say I will go with your preferences now we have discussed it and agreed it is the best way forward, but if at any stage your health changes it will then be down to what I say. So whilst it is nice to have a certain amount of control, also good to know someone knows a lot more I respect that.
As we were leaving I said can I ask you one more question what are your long term survival rates (they are very good actually) My best friend has just text me and said "Survival statistics only you could ask a hugely successful high flying leading expert that question” I actually though that was a very pertinent question to do with my health.
My daughter is the most difficult as all she can see is cancer i just keep trying to reassure her. More difficult as she is at uni and she keeps texting and face timing me to make sure i am ok bless her. God isn't this so difficult.
I totally understand where you are coming from as some days your head is so full of everything you feel as if it is exploding and the cbd oil now helps a lot I feel more normal. One day at a time we will climb this mountain and run down the other side
Take care and be kind to yourself
Hi Lady Baguette,
I dont seem to have options yet, i have been to the BCC and my consultant is really nice. Ive had my biopsy results as invasive lopular cancer on my left breast 5cm. I had an MRI and its clear apart from that one lump thankfully. I am now waiting to get a biopsy (no appointment yet) on the right to check before surgery - which will be the next step. Its all just not happening quick enough for me, waiting a week or 2 for appointments then same again for my results - my whole life is on hold.
Someone said to me "its all happening really quickly". Believe me, you have a week in my life, sitting waiting for the postman to drop an appointment on my doormat so i have a date to focus on. Believe me its not quick!
The talk ive had is a lumpectomy, no one has spoke about the aftercare, drugs, radio or chemo?
They just seem to be taking one appointment at a time. Little steps. I am taking control of the situation now, my son and daughter are terrified and like you im trying to keep them informed.
I got some CBD oil too and I think it works for me, some days i had so much going on i made myself ill.
Thank you so much for your advice, this is all making sense just reading stories from women in the same situation all feeling more or less the same. Stay positive xx
I take it 3 times a day 8, 12 and 4, so that is 4 and a half hours before my letrozole. i know it won't cure me like some of the deluded people think, but it certainly helps with the side effects and if you trust your consultand he has to trust you too, so wouldn't take anything without telling him and he gave me permisiion. i believe anything that can help this horrific disease go for it, but would never put it before conventional treatment.
go to CBD Users UK it is a closed group but easy to join they are quite strict and don't allow advertising and lots of things as it is there just to help sufferers with lots of illnesses, put breast cancer in the left hand side search box and read, a lot of them on there say cancer is a complex disease and recommend you to email realm of caring in america it is research organisation, non profit and if you email them with your disease grade, stage what treatment you are on they email back in a few days with advise. Make sure you say you are from the uk I only emailed yesterday so waiting to hear back from them. i class it as my new HRT (well I can pretend) lol
love and hugs
I only told my boss and he asked my permission to tell the rest of the team a day or so later. I went AWOL over my lunch break lol (something i dont normally do) they thought i'd crashed my car! They knew something was happening and I said realistically I will be off a while so they needed to know the truth. I go long walks, often with my partner and we talk loads, I have a wee cry and we just keep walking. We have always been keen walkers (runners back in the day).
I find the times I'm alone are worse, too much time to think. It's the silliest of things that really upset me the most! I try to watch a bit of Tv and my mind wanders same if i read a book. Ive booked to have my hair done tomorrow, dentist on Friday, i know i must be mad i mean who actually wants to go the dentist....
I don't have an appointment for my biopsy yet so ive not got a date to work towards..... xx
Hi Lady baguette,
Your journey is very inspiring, I am sending you a huge hug. I also feel taking control is the best thing, and at times I feel it’s ok not to be ok.
I have invasive and it’s stage 3, so unfortunately I will have to undergo chemo to shrink the tumour, then remove it. I will see my options nearer to the time. My sister in law is a specialist, so she is very supportive and helps me with my options. I think it is so important to have options. Please keep us posted, plus I like your positivity. I feel it helps (well me anyway, ha ha)
Talk soon xxx
Love and hugs back to you too.
Im here for you xx
I didn’t even tell my team, I couldn’t 🙈. Sometimes, I get tired of crying. Especially, as I’m not someone who cries often. I know it’s part of the process, and I’m not bottling it up but telling people is very hard for me xx
Hi mac51 & Ally2019
you are both so right we all have to do this our own way, when i went to the bc i was sure that it was nothing too.
what a shock i was in for. i was a mess couldn't think straight and certainly didn't want to discuss it with anyone until i got my own head around it and couldn't have stood the pitying looks.
when you take control of the situation yourself I think that is when i started to come to grips with it. I decided i needed a second opinion not of the diagnosis, but the treatment. so glad i did went to see another consultant after i had done my research, he said i had options and discussed them all with me. i had a ct scan which was clear apart from the lumps.
I was given the option of going on Letroxole for a few months then breast conserving surgery, then radio Chemo to see later
option 2 surgery now and letrozole then radio agin chemo to decide later.
option 3 mastectomy with letrozole maybe no radio chemo same as before
I said to him but surely it is best to just have the breast off to be safe and he answered, no the statsitics now show there is no difference if the curcumstances are right and for the breast conserving surgery perhaps a little better to go on letrozole for a little while first before surgery, if you can live with the fact it is there.
so i have been back to see him today and we have decided to go with letrozole first then surgery in a few months
as for chemo there is a test can't remember the name that they take a sample after surgery and send it to Los Angelese and it comes back small. medium or high for re occurance, then the chemo is decided. but they want to try a new thing with me I go to see the oncologist next week about having this test before surgery and then depending on the result if i need chemo to have it before the surgery.
now there is a plan I feel so much better and feel more in control and i especially like the consultant who said we will put your preferences first, but if at any stage the situation changes you will have to do as i say, which i appreciated as he obviously knows more than me.
have been taking the letrozole for a week and it is pants, but after more research (i am a research fanatic) i started cbd oil on Monday and can't believe how different I feel. it certianly helps and i feel more normal. had visions without my hrt and all the oestrogen gone I would be like a wizened old woman, feel a lot better now, even went back to the gym yesterday. I felt more in control as i am now trying to do the same things before diagnosis but don't feel i have to do it all
telling my daughter was the most difficult and she is devasted but coming round now as I try to talk to her, more difficult as she is at uni but we will get through
we have to be positive and we will all get through this onward and upward
love and hugs
Thank you very much, that is exactly how i feel in a nutshell. I know people who have been through this, but i cant ask them, "how was it for you" as everyone is different. I really need to do this my own way, I dont want to be railroaded into sharing my news. I dont want a pity party.
My team at work know, as there is only a few of us and the annual leave story would never wash with them anyway.
When i see them all i do is cry, because they are all sympathetic, giving me support by the bucket load!!
I can be normal with the people who dont know. As you say, the people who need to know, do for now.
Love and hugs xx
I feel that it is completely normal, I have been exactly the same. I have hardly told anyone, I told my colleagues that it was planned leave. I dont feel that I am ready to discuss it, plus if you are anything like me, all I do is cry when I say it.. So I am keeping myself safe and who needs to know does for now. I feel that some of my friends will be upset too, as I think they will want to support. But, it is so diffucult to pick up the phone and say it out load..
I would say to join the february 2019 chemo starters, eveyone is so supportive xx
I've recently been diagnosed with invasive lobular cancer a few weeks ago, not had any treatment yet.
I found a lump and went to my GP 4/1/19. She referred me to our local breast cancer clinic 18/1/19. I thought it was nothing more than a lump of tissue or at worst a syst. I was working and went off on my lunchbreak, I had an examination followed by mammogram x 3, ultrasound scan then biopsy. When the breast cancer consultant said "its likely you have cancer" devastated is an understatement! I thought, no one knows im here. I need to break this news to my family and kids (grown up). I left after sitting in my car for what seemed like a lifetime, i drove to speak to my partner...he has been my rock. My partner came with me to speak to both my daughter first then my son, honestly the hardest thing i've ever had to do. I still hadn't come to terms. My work!! I'm on my lunchbreak lol. Thankfully they were great albeit shocked!!
I went back to the BCC 25/1/19 and they confirmed from the biopsy that the lump was 5cm, I have been for an MRI 4/2/19 thankfully its not spread. The next step is a biopsy on my right breast to confirm its clear (still waiting for appointment).
I am finding it really difficult telling people? The friends i've told so far - as hard as its been, they've openly cried and hugged me saying you will get better, you're a fighter. I know friends that i haven't told will be upset when they find out, but i'm such a private person. I meet people everyday and they say "why aren't you at work" - i make things up - but I just don't want to be the talk of the town. I probably sound like im going mad.....is this normal?
I actually feel better getting that off my chest
frightened is an understatement, but we have to get on don't we and never give up. i have been through all this before not for myself but my adopted brother. 30 yeasrs ago at 24 he was diagnosed with a Rhabdomyosarcoma of the prostrate very rare and unheard of in those days after puberty, so no statistics at all. I tell this here so people will know to never give up. he went into hopspital to have a cyst removed, I went home and 2 hours later was asked to go back to the hospital where i was told by the consultant they dug and dug and all they could find was tumour, i asked what could be done, was told he had 6 months to live and pointed me to oncology.
he had 2 rounds of chemo fisrt time it got bigger 2nd line stayed the same chemo in those days was even more traumatic than today then 6 weeks of radio therapy when he was so burnt and sore he coudln't walk, he was by now 5 stone and we carried him around. I researched everything i could day and night, I then went back to the surgeon and begged him to do something. I was on the verge of taking him to the hoxey clinic as a last resort in america was about to buy the tickets the only thing that was stopping me was would he survive the journey. they had agreed to see him
his consultant then said he had had another look at the scans and had a gut feeling he could get it out as it was contained in a one mass. he promised notihng and said he would perhaps be up from theatre in an hour. he was in theatre 12 hours with 3 consultants and many staff, intensive care for a week and didn't know us for 3 days they removed nearly all his pelvic cavity and had an urostomy and a temporary colostomy.
when we went back to see the surgeon he said he wouldn't reverse the colostomy for at least two years because of possible recurrence/
after 2 years with great difficulty his colostomy was reversed and has good quality of life.
4 years ago he had another sarcoma on his right arm another primary same family different strain. i took him to Christies this time although it was quite a way this was removed with very wide margins and is again totally clear again from his last mri, he has good quality of life is a pain in the backside has a partner, daughter of 7 and is 54 and still here. so i know more than anyone that if one fights which is the most important thing there is hopefully light at the end of the tunnel.
I am just starting my journey like a lot of others on here and pray for all of them, i am not sure yet which is worse being a carer of a person with a life threatening disease or actually having it. i will let you know at the end of my journey. I have decided on Notts for my treatment. i have also ordered some cbd oil to help with the stress as being self-employed i work long hours.
onwards and upwards.
love prayers and hugs to all
Hi LadyBaguette, Im glad you found my blog helpful and I agree, there is a lot of information to get your head around! I too cannot put my head in the sand: I've spent 2 years reading research papers etc to whittle it down to what you now see so you can imagine the scary places my mind has been taken to which I try to steer others away from. In the past I had periods where I would get upset because my brain couldn't cope with any more information so I recommend you read a bit at a time and give your poor brain a rest in between. Your diagnosis is the same as mine 8/8 ER/PR+. I'm glad you've been able to start immediately on medication before further treatment and fantastic news that your body is clear of any nasties. Whatever life has thrown at you before is quite different to what you are about to face so its understandable that you feel frightened. I wish you well and hope your treatment goes smoothly. xx
oh my goodness what an inspiring person you are, i have just spent 2-3 hours reading your blog, given it a rest at the moment as my brain was getting a bit befuddled. I can't thank you enough for replying to me.
I went to see another consultant today for a second opinion after i did a lot of research on who to go and see, who I now think is one of the most wonderful consultants I have ever met (and I have met quite a few over the years)
l told him I had been instructed I had to have a mastectomy, with no other options, he had received the reports but not the scans and unless the mammogram showed different than what the reports said I had options. i could most probably have breast conserving surgery with radiotherapy afterwards if that was the way i wished to go or a mastectomy with reconstruction or not whichever was my choice and i may not need radiotherapy. chemo to be decided later.
He also listened when i told him i needed all the facts and didn't treat me like an idiot. he started me on leprozole today, said he was happy for me to have the drug for a couple of months if i wished before surgery or surgery immediately. he also said as time went on if things changed he would always put my health before my preferences. but my cancer would not increase if i delayed surgery for a while. with taking the leprozole
i am oestrogen and progesterone postive 8 out of 8. HER2 negative
i then had bloods taken and a ct scan the BCN telephoned with the results tonight, there is nothing showing anywhere in my body only the the 2 in my right breast and the lymph nodes are clear. I go back in a week when I have decided the way forward. this is the most frightening thing in my life and i have certainly been through quite a few, but i will fight it with my last breath.
I am afraid I am not a person who hides her head in the sand I have to know every detail as that is right for me. i have read so much in the last few days, but your blog is so informative and I think you have been so brave, I have already ordered 2 of the books you recommend. but i think for the moment for a day at least I must give my brain a rest to assimilate all I have read. i send you my heartfelt thanks and pray for your continued recovery
Love & lots of Hugs
Hi Ladybaguette, sorry you find yourself here. It really is the most anxious time after diagnosis and there is a lot of infomation which is quite alien to you. I responded a couple of days ago but due to problems with current site upgrades the posting didn't work. The biopsy results should give you an indication of the receptors which you have and these can be hormone positive, HER2 positive or both (known as triple positive) or none of these (known as triple negative). This will determine your treatment plan. You may also be given chemotherapy, depending on your score. Have you been advised on this yet? From biopsy to treatment is usually 4-6 weeks. Here is my story which talks you through each step with lots of useful information at each step http://lifeafterlola.com/
Once your treatment has been decided you can chat with others going through the same on the "going through treatment" thread on this site. I found this really helpful. xx
Hi lady baguette,
I have just recently been diagnosed too. Usually the next steps will be a CT scan, bone scan, MRI and blood tests. This will provide the Dr with more visuals, especially to ensure that they will give you the right treatment. Once, all of your results are back, you should attend another appointment to let you know your treatment plan.
Let us know hos it goes xxx
I have just been diagnosed with lobular breast cancer grade 2 have 2 lumps one 24mm and one 17mm, I am a little in shock but more relieved that i at least know now what i am dealing with, the fear before was horrendous even though i knew what the diagnosis would be, it is good to at least know what it is and what grade even though i don't know yet what stage. i had a mammogram, ultra sound and then 2 biopsies, after finding a thickening in my right breast.
I have been advised to have a mastectomy because of having two in the same breast. can anyone tell me what happens next and what the likely prognosis is