I have been diagnosed with “Grade 2 invasive ductal carcinoma 43mm in size, ER8,PR5,B5b, HER2-, and one node has shown the disease”.
I needed to be checked for some abnornmality in my spine, liver and bladder. The results from the bone scan and liver are fine but I have to wait to see a urologist before the MDT decide on a treatment plan.
I ws told I would need a mastectomy, chemo, radiotherapy and hormone treatment.
I’ve just started (last night) on letrozole and am terrified of the side effects; reading on here has made me even more anxious of the side effects.(I know that’s not the intention).
I already have mental health problems, which I was finally getting on top of, and was hoping to come off my antidepressants when I got this diagnosis at the end of July.
I’m not sure why I’m posting this, other than maybe reassurance from ladies who are going through this/have been through this.
I have used the Macmillan helpline twice and just found Breast Cancer Now website. I feel awful using these services or phoning my breast cancer nurse as I feel that so many people are much worse off than me and everything I’m going through is ‘normal’.
I also hate asking for help from friends/neighbours. I don’t ‘need’ any help yet, and so I want to reserve asking for help for when I have surgery/chemo etc.
Any tips on how to overcome this reluctance?
I’ve always been the one who helps others.
I am 67 yrs old, live alone, I go to the gym 3 x week, run 3 x week but have had to stop my martial arts class due to the physical contact and pain.
I love knitting and playing my guitar but my left arm/hand is tired and sore and I can’t manage to do these much.
I’m feeling sad(?) and lonely a lot of the time and fatigued. I feel as though I’m just being lazy by not doing much.
I do private tuition but I’ve stopped as I’m so tired and emotional. I feel guilty about not seeing my students.
I’ve been trying to do eveything I can before treatment starts, but I just can’t.
I am sorry to hear what you’re going through, but I’m glad that you’ve come to the forum. We hope you find it a helpful and supportive place.
I am sure someone will be able to share their experience with you. In the meantime please know that our nurses are here for you any time, here on the forum on the Ask our Nurses your questions or over the phone 0808 800 6000.
Hi Rosey-Posey. dont feel bad about asking questions/giving your thoughts on here. Everyone is a supportive bunch. I too had to kiss goodbye to both my boobies as it was found that I have the BRCA 2 gene. I had surgery in April and am now nearing the end of my chemo (hooray - all sorts of side effects but I keep telling myself telling that it is a means to an end, which it is) I had BC in 2009 and had the same treatment plan so know what to expect. I had Arimidex for 5 years then Tamoxifen for another 5 but hardly got any symptoms from them so am keeping everything crossed that it will be the same this time round. I am the same as you not wanting to and for help but I have found that when I do, it is fine and that is what friend are for - time for payback time, as you say that you are always the one to help. One thing I have found very helpful is to set up a Whatspp group (I called my group Boobikini as I did not want to to sound cancer related and as I called my chemo sessions a cocktail, I thought this was a good combination). Friend who were happy to go on the group gave their permission to be added. So when I need a lift, help etc, I just post it on the group, that way friends do not feel obliged but there is always at least 2 people who come respond to my need/help. Try to be strong but more importantly allow yourself not to be strong, you are going through “Hell” right now but this time will pass and by next year, the bad memories will start to fade and you can get on with your life. Sending you positive love and vibes
Try not to stress about Letrozole. I was very worried about side effects before starting it 3 months ago and I have not noticed any side effects at all. Just try and take it as it comes. Good luck x
We are all here to help you through this difficult time, at the moment it’s one day at a time. You are such a busy lady, always around to help others, unfortunately it’s your time to be looked after.
As you said you feel lonely, yes Cancer is a lonely place, but there a lots of wonderful people out there who are willing to support you, when you feel it’s the right time. Do you have a Maggie’s group in your area, if so maybe worth checking out.
I would suggest a notepad when going to your consultation, as there is so much information to take on board, we can sometimes be all over the place.
Wishing you, health and happiness with your journey going forward, keep posting, letting us know how you are getting on.
Hello Rosey Posey
I too am so very sorry you find yourself joining the club no-one wants to join.
I know exactly how you feel about not wanting to burden people and always being the one others turn too: that was me two years ago.
I lost my dad in tragic circumstances at the age of 13, as the oldest child and two younger brothers I made up my mind to be the second grown up in the house and not to worry my mum so I’ve spent the best part of 40 years thinking I had to do everything for myself: breast cancer changed all that, dare I say it but for the better!
It is very natural to compare yourself to others and in order to (forgive me for this) “stay positive” think “at least my situation is not as bad as…” however your diagnosis is your diagnosis and how it affects you and your struggles are unique to you, and anybody whose been through a diagnosis and treatment will tell you it doesn’t matter when it comes to asking for help and support
There is lots of amazing support available both online and in real life, please don’t hesitate to contact any of the support services they are there for you. You know what they say: strangers are just friends you haven’t met yet!
Wishing you well as you continue on your treatment plan
AM xxx
I’m so sorry you are going through this. I was diagnosed at the end of June with grade 2, lobular BC in my left breast - ER+, HER2-, 6cm tumour. Treatment is mastectomy , and reduction on the right breast, chemo , radio, and Letrozole. I’m 58 and postmenopausal. CT scan showed a lesion on my spine .subsequent MRI of spine inconclusive , medium to low chance of it being malignant. they already had started me on Letrozole prior to my mastectomy which was 4 weeks ago. I had to stop taking it prior to my op but thankfully not a lot of side effects , but I know others do experience some to varying levels. They will restart me on it after chemo and radio. I’m now waiting to start chemo in a few weeks . Chemo is only giving me a less than 4% benefit overall , but they want me to have it as once it’s finished they plan to scan my spine again for any change , and this will help inform whether the spine has cancer or not .
So more waiting . This is the hardest part I find, and worrying about each stage . But honestly, I find that once started, each procedure, scan etc has been doable and much better than what I was anticipating! I’m hoping the same for chemo, which I’m frankly terrified of but hope it’ll be ok when I get started!
As others have said everyone’s diagnosis is different and unique to them and also how they react to the various treatments. So I can only tell you how it is for me but hope by sharing it helps you somehow.
Sending much love and hugs, and wishing you all the best for your treatment
Hi Rosey Posey. You are very welcome to ramble away! It’s such a confusing time. I’m sure we all have at some time.
I’m recovering from single mastectomy on Monday. Your diagnosis is similar to mine. I won’t find out till next Thursday exactly what was found and what comes next, but surgeon told me beforehand to expect something like you’ve described.
You sound incredibly fit, which should help with your recovery time. But you will have to slow down to allow your body time to recover. If you don’t feel like doing much then so be it. Have some goid books handy. We are all going through a terrible time. Cancer is cancer after all.
I should imagine you have lots of friends who will be happy to help when you need it, even if it’s just to call in for a cuppa.
Go easy on yourself x
Im 63 and had a second primary diagnosed in January last year. I was on letrozole for a year and tolerated it well until I was beset with UTIs.
It’s a good drug to help prevent recurrence and although I’m on tamoxifen now, I’d be prepared to swap to an AI at some point. I wish Id been warned about UTIs. Probiotics, vaginal moisturiser, DMannose and vit C can help stave them off.
I’d stay on your antidepressants for now. This isnt an easy path. And counselling can be hard to get. I know my mental health has suffered!
Take care
Margarita xx
I would only echo Margarita’s advice, in that now is not the time to dispense with antidepressants, as you acknowledge how important they have been for you? I speak as someone who had an IDC Grade 3 diagnosis in 2018, and as a long time dependent on antidepressants ( just so that I can feel normal and function ) I knew/know how important they were to maintaining my ability to cope - my diagnosis was a total shock to me, I remember that feeling on that day. I wish you well. Hugs
xx
So sorry to hear about your diagnosis. You will find everyone has a different experience on letrazole.
As far as calling the help lines that what they are there for.
In the occasions I’ve called they really help. I’m now being put in touch with “” someone like me"
Hi Rosey-posey
Welcome to the forum, you have come to the right place for support and reassurance.
I too was petrified of starting letrozole , I got myself so worked up about taking it based on what I’d read.
I’m pleased to report I’ve been taking letrozole now for 6 months and I’m absolutely fine. I have the odd pain in some joints but taking supplements every day and I’ve been ok.
Don’t worry about it, there are alternatives if it doesn’t suit you but so give it a go as it’s a preventative to stop estrogen dominant cancer.
I spent months agonising about this drug but in hindsight I had nothing to worry about.
You take good care and reach out here if you need to talk xxx
I’m not very good with computers, so it’s taken me a while to reply. Thank yo so very much for all your replies, they have really helped me so much. I am very, very grateful.xxx
I had a very similar diagnosis to yourself back in March this year. I went through 8 rounds of chemo, 15 rounds of radiotheraphy, and a mastectomy with recon. Due to start hormone therapy next month.
I’m happy to say that I had a complete pathalogical response to treatment and was declared NED in August.
Its completely normal to be feeling anxious and worried. Definately feel these feelings and acknowlegde them, but also try to not let them consume you. I have always loved exercise and continued to stay active through my 6 months of treatment. Not only did it helo me stave off most side effects of chemo and radio, and bounce back quickly after surgery, but the endorphins helped to lift my mood.
If exercise isnt for you, try to find other activities to keep you busy and take your focus away from treatment.
This is no easy journey, and you will have days where you can’t see the light, but you will get there. Cancer will bring out a strength in you that you never knew you had. Xx
Hi I have been lucky and had no side effects from Letrozole, or from the tamoxofen I have now been switched to so fingers crossed it could be the same for you.
I am so sorry to hear about your diagnosis and how you are feeling. As someone else said, there is nothing ‘pink’ about this is there. I started Letrozole a couple of days ago. Same as you, it scares me! I am also on venlafaxine for depression but on the plus side is is supposed to reduce hot flushes! I had surgery a few days ago and now have nearly a 4 week wait to get results due to backlogs. There is s fantastic support group on FB called Breast Cancer Support as well as everyone on here. Xxx
I’m sorry to hear about your diagnosis but can relate to how you are feeling-I believe my diagnosis (2018) was the exact same as yours, though I also had “lobular features”. Like you, I was also advised a mastectomy would be necessary BUT (and I am only sharing this with you so that you can make an informed decision)-I read about another woman’s experience (on the Macmillan www)-she had a cancer slightly larger or smaller than mine-mine was 52mm at diagnosis…and she said that when she was on Letrozole, it shrank her cancer such that she was able to avoid a mastectomy. I had planned a mastectomy for myself (left boob) but after having read this woman’s story (and we spoke on the phone) I saw my surgeon and asked her if I can see what the Letrozole does to my cancer-i.e., will it shrink it enough to allow me to avoid a mastectomy. Long story short, she was supportive, and about 13 months after starting Letrozole, she was happy with the amount it shrunk and performed a lumpectomy. Unfortunately she did not get clear margins, so 4 months later I had lumpectomy #2 and she got clear margins. Twenty days of radiotherapy later…and I was considered free of disease. I have been on Letrozole nearly 5 years…don’t be afraid of the side effects (SE)-everyone responds differently, and some SE’s seem to be cumulative, so don’t expect to feel bad all of a sudden…the SE’s can take their time to have any effect, i.e., cholesterol, blood pressure (BP), bones, etc. Just get yourself checked regularly for cholesterol, BP & bone density health, etc. It may be worth asking your doctor if you can try Letrozole and see if it shrinks the cancer. We’re all different and all of our cancers may look different, so they may say no…but it’s worth presenting them with this data-that other women on Letrozole have seen a shrinkage sufficient to be able to have breast conserving surgery. Best of luck! xxxx
Hi rosey
You are strong, if you can type what you have you are already preparing yourself mentally for the road ahead. My best friend got me to focus on what event was due to take place at the end of 12 months ie Wimbledon.
I had similar diagnosis as you and i have come through.
It can be tiring getting to all the appointments, but you are in the best hands, and the surgeons are great people. Try to find something to make you smile each day - whilst wating for an MRI i could hear behind the frosted glass, behind me in the waiting room two pigeons cooing, and found it comforting, i wrote some prose about it.
Look to nature and any pet you may have. i work with horses, and although i am banned from many of my duties, the care the mares gave me is out of this world. They knew, they could smell the chemo, but they just nuzzled me. And when iwas really low they nudged me back to reality. I also found keeping and making notes helped me focus, more so than some of the literature.
Whatever your questions ask me more because i don’t want to bombard you or anyone else at their start. Lastly when faced with friends who are at a loss what to say - reply i’m glad I examined myself regularly and caught it when i did, so recommend you do the same. Strangely this helped break the ice. Love and light
Moonsox xx 8.10.23
You are someone that helps other people, now is the time to get some help yourself. I had a session at the gym to assess how I could improve my physical health after I had got fit enough after my mastectomy and reconstruction. I started doing training using machines which helped my upper body strength and took my. mind off having breast cancer. I also started swimming and aqua aerobics.
I live in a village and I am now 68, 66 when diagnosed last year in June as my birthday is in August. As I had already been diagnosed with breast cancer in 2003 in the same breast and had radiotherapy, I knew I would be in for a mastectomy so I ran away from the first hospital and went to a cancer centre of excellence. Although this delayed my treatment a bit, I was glad I wasn’t going to have a mastectomy without a reconstruction as they offered me an immediate diep reconstruction. I had enough flab in my tum for this. Everyone’s circumstances are different but I think I was lucky in some respects in having had breast cancer before, so I knew it’s not usually the medical emergency people think it is. Loads more women are now being diagnosed but the death rate is still roughly the same it was in 2003, i.e. 12000 a year in the UK. So either there are more women of the age that normally gets breast cancer, so more cases (about 46, 000 diagnosed each year now) or they are picking up more breast cancers that were missed in the past. I was single at my first diagnosis, I got married aged 58 after breast cancer so my personal circumstances changed between 2003 and 2022.
Yours might too. I was working at the first diagnosis and I still work now I have three voluntary jobs. Maybe you could get yourself a little job and help the community by giving back something rather than taking it. Then you won’t. be dwelling on cancer all day. Or watching day time tv. Having said that I am watching day time tv now all about crimes on BBC 1 which probably makes people more worried that a crime might affect them. I’ve had the odd horror in my life including being sexually assaulted by a man who gave a lift to me. So I got a few flashbacks today when there was a case going back to 1984 (my attack was in 1977 or 78) I’ve had quite a few traumas over my long life and I have coped with them on my own mainly but with the help of friends too. Maybe I’ve learnt something from them. Who knows? You have a sense of humour and you are sensible in using helplines. I also joined a support group where we met in person. There don’t seem to be as many of them now but on line suits me as no one knows who I am at least I hope not!
Thank you, Seagulls.
I am still coming to terms with everything and I’m not sure about returning to my tutoring business as I’m struggling with fatigue, uncertainty about my treatment plan etc.
But I do fully accept the need to be doing things to keep my mind off having cancer. I have always struggled with my mental health and that has certainly deteriorated in the last couple of months. I miss my students and that feeling of helping other people.
I think one of the things that has helped me most in your message is that it’s not a medical ‘emergency’. The waiting for all the various test results is really difficult. I see my breast consultant this week and will hopefully get a plan of action now that my spine,liver and bladder have all come back as clear of cancer.
Thank you for taking the time to message me. I really appreciate it.
