Ah … definitely 1 in 7 . Yes I actually hit a lot of the risk factors as regards age / weight / height and no children but I think personally that a lot of it can’t really be predicted or it’s luck . Of the women I’ve met who have had it there’s a vast range of ages shapes and sizes some with children some not . Some with other risk factors and some not . Same goes for the men I’ve met who had it .
Dear Nijan
Sorry to hear you have awful side effects.
How long have you been on letrozole for? I also have pain in knees, stabbing pains in my feet sometimes too. It’s a side effect that 1 in 5 people get. Unfortunately we are one of those 1 in 5. I have found taking precautionary ibuprofen and paracetamol has helped a lot. It’s cheap at Tescos if you go for the really bog standard tablets. They are usually hidden on low shelves and have price comparisons with Lidl or Aldi! That’s what I like - cheap drugs…and lots of them although I never do take an overdose.
I couldn’t sleep to start with, now I take piriton just before bed. It’s an antihistamine that makes you a bit drowsy. I also use a quarter tablet of dissolvable co-codamol. It’s the kind that dissolves. The tablets are huge but quite easy to to break into pieces. I put that in a bit of water and take it. I also have a bed time routine of reading for a short time. Music might work too if you can turn it off before you go to sleep.
I am off to my first recovery group tomorrow afternoon. I will drive down the road and that will be part of my road to recovery. I do hope I find it ok and don’t crash…I don’t think any of us find the moving on that easy. Sometimes we go round in circles, sometimes up a blind alley, and sometimes we speed ahead. Good luck with your journey and keep in touch.
Seagulls
Hi @Seagulls
I’ve been on letrozole just over a year.
I also have hypermobility and osteoarthritis so I’m used to some level of pain.
I take amitriptyline and co-codamol when needed but it really doesn’t help me anymore sleep wise.
I have an appointment today with our local cancer pathways professionals so I’m hoping they can come up with something.
Good luck tomorrow. The moving on is definitely the hardest part for me. I look at other people and think I got off lightly so have no real right to struggle.
I will keep in touch xx
Nijan
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@magsp1 Hi 
I understand totally. I had three surgeries the last one resulting in a masectomy 5 May 2023. Other than the tube in my side and pain for 6 weeks i was feeling fine like nothing happened. By the time i got to September i went downhill, depression to the point where my husband and to help me get washed and dressed i had no energy it was awful. I had an appointment to see the mental health practitioner and she said, "I was in fight mode physically, mentally and emotionally but now that i was through it my body etc couldn’t accept that. After a few months of counselling i am accepting of where i am as a woman and that i am so much more than a breast. I hope this helps in some way. Have a great week 
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I am so sorry I couldn’t offer any suggestions that you’ve not already tried. I can only suggest finding something to do which is so absorbing and physical it takes your mind off the pain, plus maybe listening to music at the same time so there are so many distractions you don’t notice it. The other thing which I have tried is relaxation and mindfulness which encourage me to be less tense and preoccupied with negative thoughts and mean I am tiring myself less with them.
Let me know how you get on. I will find out if there are any tips to help when I drive off to Kent tomorrow.
Seagulls
Hello
I also feel the same as you. I had a grade 1 & sentinel nodes removed & 3 weeks of radio. My pain after the op was not so good & I was so thankful for this site to read about others who were going through the same & had advice. However I have recovered well apart from lymphoedema in arm & hand. But I too feel now that I am so lucky to have had the journey I have had compared to other breast care warriors. I am on anastrazol for 5 years & having to take meds to help with the side effects. But still consider myself lucky & healthy! I’m 64 & work full time. I also think having a positive attitude helps. You have done so well. Having breast cancer is always in the back of your mind & this site is so helpful when you need support. X
Hi there.
I have also had a very straightforward journey which I am so very grateful for.
I went to GP in December last year as I had a strange lump on my 3rd nipple, which is situated below my actual breast. Scan and mri couldn’t determine what it was at first. I had biopsies and it was invasive papillary carcinoma breast cancer. I had surgery 4 weeks ago to remove it and surgeon commented that it was rare.
However I got the great news that it hasn’t spread and I am cancer free!!!
I can’t have radiotherapy due to being near internal organs but am taking Letrozole.
I’m very lucky.
Linda
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Wow, I feel that it was me who was writing this, such a similar story to me, I found out last July, after all the tests, was found I had 2 different types of cancer in both breasts, the first was found in the routine mammogram, and it was deep so I was sent for MRI, that’s when they found I had cancer in my other breast. After lots of admin fails, had surgery on both, didn’t get it all so had second surgery and markers were clear. 5 day intensive radiotherapy was the worse for me, and still really exhausted 3 months later. Also on Letrozole, like yourself no severe side effects. When I went on the moving forward course, which was brilliant and informative, I did feel like everything I went through was nothing compared to the lovely ladies on my zooms, and was in bits listening to the strength and courage that they had, I cried a lot and also felt like an imposter listening in (the other ladies definitely didn’t make me feel like that, that was just me!). Maybe it was too soon for me. But you definitely are not alone, I feel the same way, yet extremely blessed and lucky that I am here and clear! It made me feel warm that I am also not alone. Much love and be kind to yourself Sx
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Hi, I am facing a mastectomy too and wondered which route you took? Your own tissue or implant?
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Hi
I had the same high grade DCIS and opted for DIEP flap surgery.
Even though a longer operation and recovery I am Totally pleased with the outcome - good luck with your surgery xx
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I found the course very interesting and it made me feel so much less lonely in my transport lite area, unless you can drive, which I am increasingly worried about as I approach next year when I will be 70. i don’t want to be one of those mad old ladies driving at 4 miles an hour down the road in a headscarf, wellies and tweeds. Well maybe they are actually old men as I can’t see that well now.
A number of my fellow recoverers have really lovely houses and paddocks so I am suitably impressed. I do have a field outside my back doors so my garden looks enormous but it isn’t my field and it has a lot of thistles that come into my garden, plus some horrible nettles, couch grass, and the odd ant hill. One of my neighbours told me the rarest woodpeckers love these ant hills as they like eating the red ants. I destroyed one of the nests and then got poisoned by them as they squirt formic acid at you. So not only did I discourage rare woodpeckers but also got stung. Only what I deserve as one of the lower orders of East Sussex
Seagulls
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I understand what you are saying. I’ve had 3 lumpectomies and now going in for a mastectomy at the end of this month. Personally I’ve had enough! Then feel guilty as I know people are worse off. And no one would have known up to now as I’ve always looked well. But what we have been through/are going through is emotionally and physically traumatic. Just because you can’t see the trauma, doesn’t mean it’s any less. We are all in a battle to beat this disease and to do so is worth celebrating. I’ve learnt more from people who have been through this experience than the specialists. Your story may help others in the future. Best wishes for the future
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Welcome to the forum @magsp1 and thank you for sharing. As many people have already said, everyone’s experience is different and everything you are feeling is valid.
The forum is full of wonderful, kind people and I hope you find the support you’re looking for.
Here’s a link to the post that @Shi mentioned: Mountain Lion - Coffee Lounge / Chat and inspiration - Breast Cancer Now forum
And the post that @JoanneN mentioned: Very small DCIS and imposter syndrome - Diagnosed with breast cancer / DCIS/LCIS - Breast Cancer Now forum
Sending our warmest,
Lucy
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I feel like you. I had a diagnosis May 2023 of lobular cancer in my left breast. I opted for a mastectomy which was carried out on 7 June 2023. I was 79 years old and did not like the idea of perhaps having further operations after a lumpectomy. I am now on hormone treatment for 5 - 7 years. I have recently started taking bisphosphonates to offset the damage to bones by anastrozole as my bone density is low. I also had a large seroma which has not been completely absorbed. I felt very lucky as the cancer was removed by the mastectomy and my lymph nodes did not have cancer. I still feel upset at times. It is not how I thought I would spend my old age. My life is limited by age not necessarily by cancer. I have days when I am up and those when I am down. I am fit for my age, no high blood pressure and strong heart. I have some side effects from the medication but not really bad. I hope the cancer does not return and am doing my best to stay healthy. But I feel what I have gone through is not how everyone sees cancer. I read about what some others are going through and feel that I am not the real thing because I have been able to avoid all that. I generally do not tell anyone that I had cancer last year only close family and three others. I don’t think thought that this is truly imposter syndrome. Every member of staff in the Breast Clinic took my case seriously and kindly. My BCN was extremely supportive even though I was trying not to show how I felt. She treated my cancer just as seriously as she would that of any other patient. Everyone’s ‘journey’ is different and we don’t know what our future is. You will realise that you went through more than I did. I made a choice for a mastectomy because I knew that I might not be able to cope with chemo or radiotherapy. I did not know until after the results came back from the lab that the cancer had been fully removed. You and I have had just as much worry as anyone else and I am sure, like me, you hope that the cancer will not return. Please forget about imposter syndrome as it doesn’t apply to you or me. We are not pretending. We went through the worry and pain of operations and we still have the same worry others have because we do not know what the future holds. I hope you continue to do well and I hope it never returns for either of us. You have been brave just like all the others.
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Hi im new to this forum but i like so many had a mammogram and was recalled. I had a biopsy the same day and it was confirmed later that it was stage 2 so i would have a lympectomy and 6 nodes removed. It’s now three weeks and im am still in so much pain. Exercise is painful and im very swollen and sore and very tired.
I am told i may need chemo and then radiotherapy and 5 years of a estrogen blocker.
Its still major surgery for all of us.
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Can I ask how they found your kidney cyst.
The conclusion I have come to is I may have breast cancer but it doesn’t have me or make me any less the person I am. Or bird I am. I find it really annoying when I feel i am treated like a hen on a conveyor belt going off to have my feathers plucked, insides out and browned off on all sides on a spit.
That’s why I am the Seagulls I am
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Hi
Of course I don’t mind you asking. My cyst was found at my radiotherapy planning ct scan, they said I had a lesion on my kidney so I was referred for a Ct scan with contrast due to see what it was.
If you want to know anything else please ask
Take care
J x
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Girl, I am so happy for you. I wish they would have done the same thing for me when they found it last September(2023) in my routine annual screening mammogram. The Radiologist and Dr saw something suspicious, however, they didn’t tell me anything, until the end of this March(2024)!!!
Health disparity is awful in America.
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You are very fortunate to have no Letrozole symptoms. As one nurse said to me “It’s kicking your butt”. I had some underlying issues with hip and back pain but they are now quite exaggerated. I have occasional headaches and am way tired. I feel like the Letrozole has aged me by ten years. So count yourself lucky l. It’s good to hear that some are doing well on Letrozole. It’s hopeful to think that at some point I may get used to it and have fewer symptoms.
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