Further treatment - why?

[amandrose]

Hello

I have a difficult decision to make and I am literally vomiting with worry. I can’t eat, sleep or think of anything else. I feel awful posting this because I know I am so very lucky and there are many many much younger people with families going through this and to you, I send you heaps of love and healing thoughts.

Background: 65 years old, single, live alone with two little dogs to care for, no family/friends for support. I am particularly reaching out to anybody else in my position - as to whether you took further treatment or not.

I had a lumpectomy in mid July - results are IDC grade 1, stage 2, no node involvement and T1. ER+ PR- HER2-. WLE - they removed all the 16mm lump with a good 6mm clearance all around. 3 nodes removed, 1 cell in 1 node which they count as negative. However, I am still being pressed to have either radiotherapy or a mastectomy and I don’t understand why.

I don’t want to take hormone pills as the list of side effects are all things I already suffer from having taken statins for 3 years some 15 years ago. I will get a double whammy effect and I couldn’t live with that.

Radio - if it was my right breast I would say okay despite knowing that I will suffer greatly with pain due to neuropathy and possibly get other inflammatory symptoms as often happens but it is my left breast. I am told there is a risk of it crossing my heart which risks me having a heart attack later on. Also it might cross my lung which means I will get lung issues and at the end of the day - it might still not kill all (if any is left) cancer cells.

Mastectomy - at the moment, I am more tempted by this option (and would have elected that to begin with given the choice) but that still worries me with the pain afterwards and the drain management and caring for my dogs, but I guess I can get a dog sitter to live with me for a week or so after.

Q1: If you have had mastectomy was the drain an issue?

So what is my problem? Even though my 1 node with 1 cell is counted as a negative, I am thinking who is to say that another rogue cell hasn’t already escaped to somewhere else before I had surgery? In which case any further treatment will be futile. Given my age and particular set of circumstances I am really struggling to understand why further treatment is absolutely necessary given the low stats (50 out of 1000 women will get recurrence if they don’t take further treatment). That said, it doesn’t say what other issues or state of health those 50 women might be in?

Q2: Has anybody else in similar circumstances to me been in this position please and what was the result?

Thank you in advance.

[poorlyboob]

Hi amandrose. I was 53 last year when diagnosed. Lumpectomy with clear margins. Cells in one lymph node. Given 5 sessions of radiotherapy and currently on tamoxifen. The way it was explained to me - the surgery removes the tumour and the radiotherapy kills off the rougue cells that are left behind. A little bit like smashing a glass on the floor. You can pick up the big bits easily (surgery) and a hoover for the little bits you cant see (radiotherapy). Mine was in the left so had to do deep breath holding in case it affected my heart. I have had no issues. I thought tamoxifen only targeted your breast cancer, but found out at my follow up that it targets your whole body to cut down the risk of secondaries.
Only you can make a final decision. I took all treatment offered. I do still get tired fairly easily but that could also be my age and menoupausal or a combination of everything. Best wishes with what you decide x

[lynnc123]

I had a double mastectomy and sentinel lymph node biopsies both sides. I came out of hospital the morning after operation and had the two drains attached.

Although I had my husband around, I didn’t feel totally immobile. I suppose if I was alone I would have prepared with having someone around the first day and meals ready to microwave or heat up to save cooking.

I was walking a mile day one, three miles day two and six miles day three and onwards (also have two dogs) and was back at the gym doing light weight two weeks on after physio check.

Everyone’s recovery is different but I just wanted to share my perspective with regards mastectomy (age 53). I also did my exercises three times a day as was recommended to me.

Good luck in your treatment xx

[amandrose]

Thank you Lynn. I am a gym bunny too although I haven’t cycled a step or lifted a weight for a week now due to worrying about this nonsense. I still don’t get the urgency for someone with such low risk but I am getting a better perspective of professional advice given the more posts I read on here - glad I am not alone in thinking its just a box ticking exercise.

I know only I can make the decision and I will have to soon. I think it will come down to what is going to give me more anxiety (I suffered from GAD) in the future - living with the fear of it returning or the fear of it returning plus having a heart attack or be on oxygen due to lung issues. The refusal of hormone pills were a no brainer given all I currently suffer at the hands of statins.

Love and healing to you x

[Tigress]

Hi @amandrose not sure I can help that much but I live alone and was 66 at diagnosis two years ago, Grade 1 Stage 1 15mm IDC with an integral low grade DCIS. I had lumpectomy on the right breast with clear margins, no node involvement and no LVI. I elected to have radiotherapy as, due to Covid backlog, I was right on the cusp time-wise of getting the benefits of mopping up those suckers that are inevitably left behind during surgery before they went walkabout. I have also taken Letrozole for the best part of two years but with my results from V3 of Predict am considering giving them up. Mastectomy was never mentioned. I’m intrigued by your experience with statins because I’ve been prescribed them as Letrozole increases cholesterol. How have they negatively impacted you? This is instrumental in my review of taking the AI.

Bottom line with refusing treatment, which is your right, is living with the fear of metastatic spread which can happen to anyone even with apparently favourable outcomes like minimal node involvement and no LVI. If you can cope with that, have a clear indication of your risks through NPI and Predict and can own your decision should you get a distant recurrence then turn them down. I am extremely risk averse so I took the decision to have everything offered and have no long term issues two years on. It seems to be a binary choice but one with no guarantees. I’m so sorry to hear of how badly this decision is affecting you and hope you get clarity soon.

[amandrose]

Hi Tigress, thanks for your reply.

My experience with statins started around 2006 when I was prescribed them initially. By 2009, I couldn’t even walk up my own stairs indoors, I had to stop halfway to catch my breath. Everything hurt and ached. My skin was mega sensitive, just the slightest touch felt like I was being prodded by a red hot poker. I just had a hunch it was the statins so I took myself off of them and within 2 weeks most of it cleared up.

Basically, it has left me with fibromyalgia which has progressed year on year. My skin is still very sensitive, any normal person’s pain response is triple or more in me, I can get extreme pain and a bruise at thumb press. I get breathless sometimes. I am very fortunate that my joints/muscles aren’t too bad but I do exercise. Brain fog is dismal - some days I think I have dementia. Heat intolerance is off the scale - I have a comfortability factor of between 10 and 17C now, anything else is too cold or too hot. I have many sensitivities with food, chemicals, the sun. Peripheral neuropathy is quite bad in my hands especially. They turn scarlet for no apparent reason and are hot and itchy, it lasts for a few minutes but it is very uncomfortable and embarrassing. Head and facial sweating is constant and very embarrassing. Chronic fatigue most of the time - for the past 3 years I have had to go to bed for an hour or two in the afternoon.

I was under a consultant and he declared, after me trying a few different statins and also something that non-statin based, all of which worsened my problems, that in analysing my bloodwork, my overall score was high (it was 9 at the time but I think its probably 12 now), my HDL and LDL levels were similar so they kind of cancelled each other out and I didn’t have to take the statins if I didn’t want to!!! I am quite peeved as although the statins have now long gone, the fibro reigns supreme and new symptoms seem to be appearing all the time. I also know other people that have developed RA etc with them. Thankfully that hasn’t happened to me - yet! The statins hardly changed my levels anyway because it is familial - my whole family have it.

All these things of course are on the list of side effects for the AIs, hence my reluctance, especially as it was deemed after the damage was done that I didn’t have to take the statins anymore.

This is just my experience and I would say I was unfortunate to experience the worst possible side effects. But of course, everyone is different and you may not have any problems whatsoever. If you haven’t had any problems taking the AIs then you may well be okay on statins. My problems on statins didn’t start until year 3 (or that were noticeable), but then they came on thick and fast.

I would say if you are under a consultant for cholesterol, talk it over with them before making any decisions.

Love and healing to you x

[Tigress]

Thanks for the reply @amandrose I have a very dear friend who has fibromyalgia (which I was unaware of until she was diagnosed) so have a limited understand of how awful the condition is. It is incredible that such a thing could be caused by the most prescribed drug in the world - a statin - and you may have been spectacularly unlucky to have such an adverse reaction to it but the outcome is such that I now fully understand your reluctance with regard to the cancer treatments. I do get fatigue and brain fog and know that both Letrozole and atorvastatin can cross the blood/brain barrier so they could exacerbate that, particularly as the brain has more cholesterol in it than any other organ (in a good way, cholesterol is in every cell of our body as a neurotransmitter). I’m not under a specialist for cholesterol just the GPs who, once again, follow NICE recommendations to the letter. There are a lot of strokes leading to vascular dementia in my family hence being prescribed the statin. I must ponder on it some more. I’m afraid I don’t know what RA is but I’m glad you haven’t got it! Your MDT should surely be aware of your comorbidities and should take them in to account when devising your treatment plan. Whilst it can only be your decision, they surely must have an opinion in the round. Once again, I hope you can quickly come to an optimum decision with which you are comfortable to quell this anxiety that you’re going through. Give your dogs a cuddle from me.

[amandrose]

RA - rheumatoid arthritis. My team have got all the information but sadly, they don’t read the notes - same as GPs, I have to go over my history time and time again with every GP I see even though it is all clearly documented. They don’t have time to read notes these days - apparently!

Good luck to you too xx

[rockym]

My first diagnosis was at 46 years old. I had a lumpectomy, chemo and radiation. I did have a drain from the surgery so it is not just with a mastectomy. I did chemo because at 46 they considered that young. Funny thing is now I read of many 30 somethings going through this. Also, I had 2 micromets out of 6 nodes taken out. The lymph node removal caused a bit of havoc on my system and after about a year it finally settled.

Jumping forward to today… I will be 60 next month and it’s back. I thought it was a local recurrence (same breast, same stats), but my doctor is concerned of metastases. MRI, bone scan, CT, PET and blood work for tumor markers. I had none of this the first time. They found something in my abdomen both on the CT and PET so I am off for a biopsy in the next couple of weeks. So, yes… a rogue cell found itself a home back in my breast adn hopefully not somewhere else in my body after 13 years.

So onto your question about the rogue cell. You are correct in that it may have already escaped. Also, I did radiation and what good did that do? It still escape. Heck, I did chemo, lost all my hair and put on a happy face for my kids as if this was a walk in the park. All of that and here I am again. I am at my best weight, blood work is perfect, cholesterol spot on and I was biking or walking every day. I’m considered very healthy except for some nasty cells that shouldn’t be in my body. I think you should do what feels right in your mind and body. Think about your life expectancy. I know that sounds a bit morbid, but I know my parents, aunts and uncles all passed between 75 and 85. They all had different cancers. No one in my family had breast cancer, but if I can get 20 more years I’d be okay with that.

[amandrose]

Oh Rockym,

I am so sorry this has happened to you again but it highlights exactly what I was saying and the fact that all the treatments and the suffering may still be in vain - there are no cast-iron guarantees with anything.

I think for me, suffering with anxiety (I have generalised anxiety disorder) its about what am I going to worry about more going forward - the cancer coming back (which it can do with whatever scenario I go with) or having a heart attack and lung issues from radio and still the cancer coming back.

I understand completely what you are saying about life expectancy and I have already decided that I just want another 7-8 years to see my dogs out. I am their third owner, them having lost both their original parents to cancer (one being my late-partner, I took them on after he suffered a debilitating death from kidney cancer). Once they are gone then I am alone in the world and will take what’s coming. I have so many other things wrong with me anyway - fibro from statins, sky-high cholesterol etc etc. I’ve already had ovarian cancer 30 years ago and had a complete hysterectomy and chemo. My mum had right breast cancer and radio when she was late 40s and went on to live until 89 despite two heart attacks. So who knows?

Thank you for replying. I am sending you all my love and healing thoughts, I pray you will be okay. Take care xx

[Tigress]

After caring for my husband with MND, I then cared for my mother for some years who lived with dementia. That is the one thing I dread, dementia, having no family except a brother who is 6 years older than me, to take decisions for me should it happen. I have thought long and hard about this and am implacable in my opinion that, if I can get to 80 (11 years away in October) that will be enough for me. I’m so pleased you raised the issue of coming to terms with one’s own mortality. I have said this to several friends who just think I’m being over-dramatic, too depressed or will change my mind when I get there. But I’m not and I won’t. Not that I’m suggesting for one moment that I’m booking a ticket to Switzerland but I have no desire to become a decrepit old woman, demented or not. I truly think it’s something we should think about when considering treatment. I wish you well for the biopsy and hope those 20 years are happy ones.

[JoanneN]

Hi @rockym and @Tigress

I am only 59 but I also think about how long I want to live and what choices I am going to make . I don’t talk about it much because it does sound a bit morbid but actually I think it’s just sensible and as a Nurse it isn’t something I can really avoid. Although I’m not the healthiest person for my age ( overweight high BP sleep apnea previous retinal haemorrhage ) I have seen many people my age or younger in far worse circumstances than myself. I also on a daily basis see elderly people who are just existing and I don’t want that for myself or anyone I love . Neither of my parents had dementia as such but my Mum had a condition that caused her blood pressure to be very low , the circulation to her brain was affected and it changed her personality and affected her memory and my Dad became increasingly forgetful and frail - heartbreaking as they were both intelligent and beautiful people . Mum struggled with ill health all her life but made it to 79 and my Dad passed away at 92 . It wasn’t just that he became frail he said said to me fma few times that he was too old to live - he didn’t understand the Internet and never got to grips with a mobile phone and often felt that it wasn’t his world anymore . He had an amazing life but by the time of his death large chunks of that had gone missing from his memory .

I have no children / grandchildren though I would like to see my niece grow up and my goddaughter get married and have a baby and I feel that if I can get to 77 with a reasonable quality of life that will do me very well . Xx

[Tigress]

I’m so sorry @JoanneN. It’s heartbreaking to see your parents diminish so much. I’ve had five close, elderly relatives, obviously including my Mum, having to go into care for either physical or cognitive decline and I could weep at the sights I have seen. Nothing, absolutely NOTHING I have experienced during the past ten years persuades me that I want to live to an age where quality of life and self-determination has gone. It’s not what I want for myself. Just to get poncey for a moment, the lines spoken by Hamlet about death has always struck a chord with me “if it be now, ‘tis not to come. If it be not to come, it will be now. If it be not now, yet it will come - the readiness is all.” Morbid? I don’t think so. Just making ready. By the way, powers of attorney, a will and even a living will, should be done by every body. May sound morbid but it so much easier for those who have to take decisions in decline and, eventually, death. In other news, I’ve just bought a sack of mixed bulbs to plant on this sunny Monday, so, at the moment, life is good.

[ChristineP22]

Hello

The drains are not a problem - if you have them after mastectomy they will be in for a short period of time only. You can carry the parts in a bag on you. Some people have no drain. Speak to the breast care nurse about your concerns in this.

Why not call your breast care nurse anyway and talk through your thoughts - it will help out things in perspective. Also the helpline of Macmillan and breast care now are excellent, very helpful to talk things through and get informed advice.

As for hormone therapy, yes there is a long list of potential side effects… but remember there are many people that have none or only very limited side effects. You could always try and see what happens. You can stop or move to something else (different hormone therapy)

So much to think about I can understand (from experience) about the spinning head. For me it really helped to talk through things with the BCN and helplines, though in my case I did not really have an option if treatment.

Hope you get your answers in what works for you.
Hugs

[AMWG]

Hi @amandrose

I was 54 when diagnosed with IDC in left breast, lived on my own and have two cats to look after. I was also diagnosed in the middle of covid so had little support from family other than video calls. I had radiotherapy and as already advised by others you are instructed to hold your breath to push heart and lungs out the way. It also cuts out if you don’t hold for long enough so found the risks to heart were probably minimal if that helps at all. I was also put on Letrozole and then ended up on statins when cholesterol went up. It is personal choice what you decide to do and hope you get the support you need and find a way through that works for you. All the best x

[emmah1]

Hi amandarose, I had pretty much same diagnosis as you. I wasn’t offered a mastectomy only radiation which I took. They teach you the breath hold technique to move your heart as far as possible out of harm’s way. The treatment is so targeted I haven’t even given my heart a thought since if I’m truthful, I do however think about my lungs as am an ex smoker. I am also on the Zoladex implant and exemestane and I have to say the side affects weren’t too bad for me other than the forced menopause. Perhaps try them and see how you get on?

[honey1]

Hi I had invasive lobular Breast cancer and just had a lumpectomy in August. My radiotherapy is soon. I’ve been lucky as my cancer was caught early. I’m 61 and a bit apprehensive about taking Letrazole. Are you ok ? Have you any side affects ?

[amandrose]

Hi Honey

So, I decided not to take Letrozole in the end. The side effects are all the same as I got with statins which crippled me, in addition to cholesterol raising and mine is already sky high and there is nothing anyone can do about it. I have also declined radiotherapy as I am having panic attacks at the thought of living in my head wondering whether the cancer will come back (as it can - RT only gives you an extra 2% chance of it not returning) or whether I will have a heart attack first. I am now waiting for another appointment back with the breast care team to talk about a mastectomy if they think it is necessary. That is the best option for me and carries exactly the same outcomes as the other toxic stuff.

Sadly only you can decide - you just have to listen to your heart and go with your gut. Sending you love and healing

[AMWG]

Hi @honey1 I am very well as things currently stand. I have had side effects from Letrozole, most notably putting my cholesterol up which required statins, and additional side effects. I also had aches and pains, increased menopausal symptoms such as brain fog, tiredness and hot flushes, this was worse in the first six months, but found a way through that worked for me to manage my symptoms. Exercise and wellbeing techniques such as breathing exercises, slowing down my pace, to do lists has also helped me. I think everyone’s response to Letrozole and potential side effects is different and until you try it for yourself you will not know what affect it will have on you. I definitely think the brand of the Letrozole is a factor in how severe the side effects are as I found some months can be worse than others so am keeping track of symptoms and brand and talking to Pharmacist to see if I can get preferred brand when I get my prescription, although often a challenge for them. Even when I have a month with worse symptoms I have still managed everything. One of the things I did at the outset was to look at benefits compared to disadvantages, including my ability to manage symptoms, talk it through with my Oncology team, and make a decision that I felt worked for me. Hope that helps and wishing you well with your treatment.