Mastectomy and Chemo - Terrified, DX Today

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Hello everyone, I’ve been recommended to this site by a friend of mine, and I’m hoping I can get some answers and support here.

Found a lump in March, assumed it was a cyst as I’d had one in 2005, but have today had several biopsies from three lumps and one suspect lymph node.

Consultant extremely lovely, but says she’s pretty sure it’s all cancerous (poss not the lumph node which will be a relief) and that I will need chemo and a full mastectomy. This I find horrifying - I don’t even get to keep my nipple, which seems extraordinarily important to me. Is this a normal reaction?

My Mum had breast cancer last year at age 74, I’m 45. I’m currently studying at uni, and about to enter my third, ie graduation, year in equine science and drama (combined degree). I’m even more worried looking on the forum to see that chemo goes on for 6 months or so - is this standard? I thought it would be shorter. They are offering an immediate recon, which obviously I will choose to go for, but without a nipple for some weeks, I’m upset at the idea of a mound with no middle, as it were. I fully appreciate that I’m better off living with one breast than dying with both intact, and I know my partner will be supportive, but even so I’m finding this extremely hard to get my head round.

If chemo goes on for 6 months, will I be able to carry on with the last year of my course? I’m not very good on drugs and have all kinds of bizarre reactions and intolerances to things, and have spent the past two or three years suffering with increasing episodes of violent migraines with a lot of vomiting, and in the months since Feb this year, these eps have got considerably worse and can last 10 days straight. The pain is intense, stabbing behing my right eye and the top of my head feeling like it needs to explode because the pressure’s so enormous. Has anyone else experienced bizarre health problems prior to being dx’d with cancer ? My Mum had strange health issues before her treatment, and they all resolved once she was treated. It would seem logical to me that if the body is busy trying to fight off an increasing cancer, then other immune ‘jobs’ fall by the wayside, but apparently this isn’t something recognised in the cancer treatment circles.

I can’t believe I’m about to lose a breast. I’m having an MRI on Fri this week to check the other breast as well because they can’t get clear readings from the ultra sound or the mammo (worryingly, NONE of the lumps showed AT ALL on the mammos - I thought they were supposed to be there as our safe-guard to check all was well on a regular basis ? I had a mammo 2 years ago and nothing showed, but now I’m thinking that these lumps could’ve been there then too. I was quite ill for most of 2005, but made it to uni to start my course, then got properly felled by some hideous virus in the October/November, which went on to cause my immune system to attack my muscles and necessitated putting me on serious steroids that saw me go from a 10 to a 16. It took a year off them to get back to my normal weight (I don’t diet but eat an extremely good healthy fresh foods diet), but started losing weight about 3 weeks ago, and getting massive carbohydrate and sugar cravings, and eating heaps and heaps, which isn’t my normal eating pattern at all. I wondered if anyone else’s cancer has presented like this.

If anyone can answer any of these slightly odd questions, I’d be very grateful. I don’t really know what to do with myself at the moment, and if I start talking about it to friends, as I have done today, I just get so distraught.

Thanks,
Nikki.

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Hi Nikki
You sound like you’re having a pretty tough time at the moment. As you have quite a lot of questions I wondered if you would like to contact our freephone help line. You can discuss any concerns you have confidentially and the staff who are either breast care nurses or trained staff with experience of breast care issues may be able offer you some help and advice with any problems you have.

The number to ring is freephone 0808 800 6000 the lines being open Monday to Friday 9am - 5pm and Saturdays 9am - 2pm. I hope this helps.

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Hi Nikki

Welcome to us and the forums

Gosh, you sound like you are having a very rough time and I can understand how worrying and frightening it all is.

I was 40 when I found my lump but decided to ‘sit on’ it for 6 months before consulting my GP, to be honest I was quite naive as I did not realise that BC was a problem when you are younger! I’m a staff nurse and worked in general surgery for many years and at the time I never really thought about the fact that some of the ladies in for Lumpectomy & Mastectomy were younger that what I imaged the ‘norm’ to be!

I had my chemo first (neo-adjuvant) and it was going to be over 5 months (6 x FEC), I am another person who reacts in very strange ways to different drugs and the FEC made me so ill that they stopped after 4 cycles (August - end October 06). I know I would not have been able to work through chemo as it made me just totally yucky, I was half way through an OU degree but decided to put that on hold and it’s only now that I feel up to undertaking study again.

I had my Mastectomy in January this year, I managed to continue with the bad luck and had a wound infection that made sure I stayed in hospital for 11 days! After that my recovery was rapid and I was back to riding my horses 4 weeks post op, mucking out and looking after our 35 dogs and kennels, So that side of things was quick for me personally,

I guess for once I was lucky in that I did not require radiotherapy, just hormone tablets. Even those were not a walk in the park for me and they have already been discontinued. I have made the decision not to have a reconstruction, I couldn’t have one at the time of my op as they were unsure whether I would need radiotherapy, I really have not got time to recover from such a large op. My hubby works away from home and I have no one to look after my horses & dogs during the week, if I need to take it easy for a length of time. My BCN said that I would need to do nothing literally for at least 8 weeks post recon?? that is impossible in the real world for me - so I am happy to continue as I am for now.

As for health problems prior to dx, I started feeling unwell generally, aching legs & extreme tiredness for about 2 months before dx, at the time I did not click why I was feeling this way.

I hope this answers some of your queries? I do hope you get your results through quickly so that you get your treatment plan sorted and underway as soon as.

Lynn x

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Hi Nikki

I was diagnosed only 4 weeks ago with evasive spreading cancer on right and small evasive on left. I had a double mastectomy 2 weeks ago and Chemotherapy starts for me next friday. I had a lot of strange illnesses before being diagnosed. I contacted a viral infection that caused Rhuematoid Arthirius and went up to a size 16. I then found it to easy to diet and went to a size 10-12 very quickly to be told now that I may put weight on again when the chemo starts. We were told by the breast nurse that the chemo effects poeople in different ways but definately you may feel rough for at least 3-4 days after treatment then 2-3 weeks of getting better then it starts again. The course is for 6 months for me so that sounds about the right amount of time. I may need radiotherapy as well but I was her2 negative so that was good. I was also told that it was oestregen based not progesterone (those dereaded hormones!) so I may need Hormone therapy as well. The consultant will tell you what they find once it all gets going so I hope you get the results you want. Talk to the breast care nurses about your fears and about your uni course - they will give you lots of info and support as well. If there is anyone out there that has had chemo I would like to know what to expect the first time! Good luck
Julie g

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IFor Juliegod
I think it depend on what type of chemo you have. I started off with 4 FEC pre surgery . On the dayof my first treatment I was terriffied, but the haematology nurses soon put me at ease, they were and still are brilliant.The day after my first fec my friend came round and we went for a long country walk. I slept when I got back, because I think I was emotionally exhausted.I went back to work a couple of days later and was fine. With fec you feel worse for longer with each treatment due to the build up of toxins in your body, or at least that was my experience. However you get into a cycle and learn to plan things for your good days.I gave up work immediately after the third treatment due mainly to fatigue. It was quite handy because I work shifts and managed to arrange my days off after the chemo. However following surgery I had Taxotare, and found this much more difficult to cope with. Because my job is quite physical and demanding, I haven’t worked since my third treatment. I’m now down to my last two treatments then will have rads.I must say though that the very thought of chemo for me was much worse than the actual thing.(I have a madly vivid imagination)
Can I just say that although you will have your good days and your bad, if you are like me you will still find time for fun in your life, for love and for laughter, somehow these things beome more important. May I wish you well with your treatment, I’m sure like so many others you will come through on top and smiling.
PS about six months before being diagnosed I had a particularly nasty flu bug which left me feeling under par for about 3 months Holly hockx

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Thankyou to everyone who’s replied - it’s much appreciated.
Llynnt - I’m also horsey, so we sound quite similar what with horses and weird reactions to things :slight_smile:

What’s neo-adjuvant and what’s FEC exactly ? I’m quite medical, but the cancer side is new to me, and all these initials and phrases keep cropping up and I have no idea what they mean.

I didn’t know you need 8 weeks of nothing after recon, and although Dr Hubbard said they do recon immediately (at time of mastectomy) I’m guessing we have to see what the biopsy results show on Fri as to whether they officially offer me that. I hope they do. I, at the moment, cannot accept the thought of having a denuded chest with no breast there. I know other ladies have that, and I admire them for being able to cope with it, but it isn’t for me. Although I suppose it might have to be, depending on the results on Fri. I hadn’t even considered that recon would not be an option :frowning:

I had a good chat with Dr Hubbard while she was ultra sounding and biopsy-ing me on Monday, and she thinks it’s totally logical that all these peripheral symptoms are tied in with the cancer, although there’s been so little research into this area that there is no official data or standing on the issue.

I had a long tallk with my fantastic GP this morning too, and he tells me my presentation is unusual, because of it’s rapid onset and lack of inflammation, which he thinks is connected to an auto-immune problem that we have suspected for some time. I got a particularly nasty virus, RSV, in Oct 2005 which wiped out 5 months of university in my first year, and led to severe myositis and necessitated heavy steroids to stop the bizarre response my immune system was making. He also thinks that I very possibly have a hypothalamic cyst of some description which is causing all my thryoid/adrenal/immune/other health problems, including the vomiting and violently awful headaches I’ve had for years (but which have got very much worse in the past two months), and Dr Hubbard was in favour of doing an MRI on my brain at the same time as my breasts, which is being done on Fri before we see the Onc, and my GP has emailed her this morning in support of getting this extra MRI done, which will be a huge help if they agree to do it. Of course, this isn’t “normal” either, so we can only hope that they will agree to doing it. With one consultant plus my GP in support of that, I’m hopeful that they will do it.

My GP, as I do, thinks that the underlying whatever-it-is is also causatory in this cancer, and he is optimistic that this whole thing will fix me for good, which would be the most incredible relief. The bad days that people describe during chemo are days that I’ve been having pretty much my whole life, with incredible tiredness, massively excruciating headaches with movement noise and light hypersensitivity, joint and muscle pain and muscle spasms, wonky eyesight, brain not working, all manner of odd skin complaints ranging from fungal infections to acne to eczema to brown pigment patches on healed spot lesions, hormone imbalances, fainting, nausea, and the dreaded and dreadful vomiting, which along with the headaches and the tiredness, is the most debilitating of my long-term symptoms. My GP says he’s sorry that I’ve had to develop breast cancer in order to get an MRI, but I’m just releived there’s a possibility that it might finally get done (we’re financially stuffed at the moment as bf has lost his job and always too flipping ill to work regularly, and we’ve had to put our lovely house on the market and resign ourselves to moving to a small box somewhere, otherwise we would have had it done privately).

To be properly well, really well, to be able to go to bed at night knowing that sleep will leave me refreshed instead of exhausted, to be able to plan a whole week without having to factor in at least 3 “non days” of having to stay in bed and wait to for the pain and the vomiting to pass, I can’t tell you how fantastic that would be. Just to be normal, to have normal health. If it takes the experience of cancer in order to uncover the underlying cause of all the illness I’ve had in my life (which they always say is “non-specific” and therefore untreatable except symptom by symptom), then it’s a blessing in disguise. As I said, my GP is convinced this will all get sorted out now, so hoorah for that at least!

Nikki x

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JulieGod - Poor you with the weight increase - same thing for me when I had the heavy post-RSV steroids. I went from an athletic 10 (all the horse riding) to a lumpen fluid filled 16, and literally couldn’t get my clothes on past my knees, which was hugely upsetting for me, so I know how you felt. I had no idea that some people react to chemo by gaining weight! Is that because of the steroids they put you on at the same time, do you think?

My GP was very reassuring about the chemo when I spoke to him this morning. Because he thinks some of my problem is immune based, he thinks the chemo will improve things for me no end, regardless of the cancer, as it were. He said 6 months was about average, but that some places do it every two weeks and some don’t, so we’ll have to check on Fri when we see the onc.

What’s Her2 negative? What does that mean? My Gp says I’ll probably need oral chemo afterwards too, and given my complicated endo history, there’s no telling what hormones I’ll end up on. If there is an HPA (hypothalmus-pituitary axis) cyst, they will have to replace all my hormones synthetically in any case, so I’ll probably end of on a bit of everything! Although we haven’t had the results yet, I’m fairly sure my cancers are oestrogen sensitive.

I know I’ll be seeing a BCN on Fri too. We got sent one on Monday after the ultrasound, and I couldn’t listen to anything she was saying. I’m sure she’s lovely, but she was all tiny and twitchy, like a sparrow, and started wittering (or twittering!) on about how a friend of hers had had it and found the most fanttastic hairdresser who helped her with wigs throughout her chemo…I had to stop her because I just could not listen to her at that time. I put my hand on hers and said, “Look, I’m sorry I’m being so horrible, I’m actually a very nice person, but I simply can’t listen to anything you’re saying right now, so please stop.” She’s now on holiday for two weeks, so I’ll see the other BCN on Fri. I needed someone calm and serene, like Dr Hubbard was, and she was just too agitating to be around.

Did you or are you having recon after the double M? If you aren’t, can you tell me why you’ve chosen not to, or was it not medically an option?

Dahlia - Hmmm, well now I don’t know if they are going to be able to offer it - have to wait til Fri for the results. I hadn’t realised there were cases where recon was not possible.

Nipple - my friend Chrissie, who is a nurse, and actually turns out to be the chief Breast Surgery Theatre Sister at my hospital, came round yesterday. The nipple thing is because they can’t maintain the blood supply after they’ve taken it off in order to open the breast. None of my tumours are attached or even near to the areola, so it isn’t for that reason that I’ll lose it. Chrissie says it’s just unavoidable becauase they can’t keep the detached nipple supplied with blood for long enough to give the reconstructed breast time to settle into shape, and that’s all there is to it. Still a bummer, whatever the reason! My reassuring GP, who has also worked with an endo Breast surgeon, says that the nipple recons are fantastic, that they tattoo them to match the other one, and that you can’t tell the difference between recon breasts and real breats except if you’re looking at them closer than 5cm away, so that’s helped me a bit too. Thanks for the expectations thing - I had already found out about the length of time after recon before a nipple would be added, but I appreciate the thought :slight_smile:

Lucky you with the chemo - God, I hope it goes that well for me! I know about the cold cap, but I cropped my hair off using number 8 clippers a few weeks ago, so it won’t be too much of a shock to lose my hair, which I know I’m likely to. I have already decided I’m only going to wear “obvious” “fun” wigs - I don’t want to pretend I haven’t lost my hair, and am happy to go bald, and happy to wear a nice funky pink 30’s bob wig for special occasions! And yeah, peversely looking forward to not having to epilady legs, or immac underarms, or pluck out endless upper lip and chin bristles! Just wish there was a way of specifying to my body that it isn’t allowed to grow it back on legs, u-arms, chin and upper lip! Is it very very weird losing eyebrows and eyelashes?

Thanks for the other links, I’ll have a look.

HollyHock - What’s 4 FEC? Is 4 the grading of the chemo? They go 1 to 5 don’ t they? Can definitely understand the accumulative effect of toxinds making you worse over time with the chemo, and imagine that’s what will happen with me, although I’d love to be like Dahlia with it! What’s Taxotare?

Relate to the vivid imagination, so know what you mean!

Nikki x

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So, everyone pretty much agrees they had other symptoms prior to their dx then? That’s interesting. It’s logical if you think about it though. We’ve all got cancer cells in our bodies all the time, they’re usually kept in check by the immune system, but if that gets overloaded then the cancer gets a hold and off we go. My guess is that if the immune system is overwhelmed by cancer cells, and busy using all its resources to try to fight them, then other illnesses are inevitable because the resources aren’t available for anything except the cancer. Makes sense, no?

Many many heartfelt thanks to everyone for replying, I can’t tell you how much I appreciate it. I’m sorry I’ve gone on for so long again, but if you can answer my further questions, I’d be very pleased to see your answers.

Nikki x

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Hi Angel153,

Noticed you had a couple of questions there.

HER2 negative means that there are no protein receptors involved in the cancer. Basically (I think) protein in the body can go a bit haywire and attach itself to cells and cause cancer cells instead of doing what it normally does. This is treated with the drug Herceptin.You might also hear people saying that they are hormone positive, this means that their hormones have gone into cells and instead of doing hormone things have made cancer cells instead. This is treated by oral drugs, which can be taken for a varying amount of time. I’m both hormone positve and HER2 positive so I need everything but at least there are things out there that will help me and Herceptin especially is supposed to be really good.

I think 4FEC just means the number of cycles of that particular chemo that Hollyhock needs, but please correct me if I’m wrong. I’m having that as well and I’m having 3 cycles (first one completed on Tuesday and feeling fine) and then moving onto another chemo drug called Taxotere for another 3 cycles. My chemo is every 3 weeks which is why it lasts a while. FEC stands for the three drugs involved:

Fluorouracil
Epirubicin
Cyclophosphamide

You get them injected by syringe into a canula in your hand.

Hope that helps, very best wishes to you all.

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Hi Nikki,
Sorry to read you have felt so unwell for a while. Prior to me being diagnosed I too was unwell. I started to feel unwell easter 06 and in May 06 had terrible pains all over my body. I was referred to a consultant rheumatologist because one of my sisters suffers from and auto immune illness called Lupus. The bloodtests came back as mild Lupus, S.L.E. I was prescribed anti inflammitories and anti malarials which seemed to help ease the joint pains. As the summer went on I was increasingly tired and suffered from shortness of breath walking up hill or stairs. I couldn’t really describe how I felt other than I felt ill all over. By December I had such bad chest pains and breathing problems that one morning my husband called for an ambulance. At A&E they did ECG, chest X-rays and bloods all of which came back clear. I was even admitted overnight for a CT scan on my lungs which also came back clear. At no time during this time did I have any lumps or bumps on either of my breasts. I was diagnosed with fibromyalgia and over Christmas last year and spent the whole holiday as weak as a kitten and virtually bed ridden. I am usually a very active person and for the best part of a year had been struck down with a “complete mystery” I would like to add though that all the doctors, nurses and staff who cared for me were absolutly fantastic.

It was 2nd April this year that I discovered a large lump in my left breast, I was referred to a consultant who aspirated a cyst. 10 days later another cyst in the same breast came up. The specialist aspirated another cyst and arranged for me to have a mammogram and ultrasound. I have been taking HRT for about 7 years because my oestrogen levels were quite low and I was perimenopausal. I am at the moment 43 years old but have family history of early menopause. It has been suggested that cysts can be quite common with HRT. When the results of the needle biopsy came back as cancerous it was a huge shock. I had a lumpectomy and some lymph nodes removed 15th may. A clear enough margin couldn’t be taken so I had a left mastecomy done a couple of weeks ago.

I do wonder if the cancer triggered the Lupus or visa versa. No connection has been medically confirmed but I do know Lupus can be triggered by hormonal activity. I have been told that the cancer they found was reactive to Oestrogen so I’ve been taken off HRT and now experiencing awful hot flushes. I have to have 6 months of chemo followed by rads. I’ve decided that as I work with children during the day and am detached youth worker in evenings I’m going to opt for funky hats and scarves and maybe a pink wig for the youth work.

Good luck with all your treatment Nikki

Diddly

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Hi Hollyhock & everyone else

Went to see oncologist today and ended up really terrified. He mentioned having a central line put in … help is this normal or am I being paranoid! Because I had a bi lateral mastectomy and cannot have a canula put in my arm they have recommended this - not something I thought about (or read on internet!) and its really freaked me out. I have to undergo 6 x FEC but that may change to 3 x FEC and something called taxadore? (or something like that). My first treatment is to start on 20th July (4 weeks after surgery). I am not looking forward to it at all but know that this is the best way forward. Hope someone somewhere can shed some light on this - it may at least calm me down a bit!. Keep smiling Love & Best wishes

JulieG

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3FEC and 3Taxotere is very common and very good chemo not a laugh a minute while you’re on it but apparently gets good results.xxx

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Thanks for the answers, and sorry to hear about Julie. I’m sure a central line isn’t going to be an issue, and if they can’t use a canula, there isn’t any other way round it.

Mine are oestrogen pos, so they’re hoping to treat with mastectomy and tamoxifen and no chemo, which will be a relief. Now waiting for the results from the brain MRI and breast MRi done on Fri, but I strongly suspect that will show cancer in the other breast too, and possibly more in the identified one because of this dense tissue thing.

I’ve been ill for years and years with similar to Diddly - all very debilitating and yet largely undiagnosed as anything other than “non-specific” -exhaustion, allergies, oestrogen dominance, migraines, muscle and joint pain, etc etc (did get a dx of hypothyroid and hypoadrenal from a private doc, and am certain I’ d be dead by now if it wasn’t for him prescribing T3 and hydrocortisone, and my current GP is in full support of this too). Am also now on three seperate anti-emetics, morphine, Imigran and dihydrocodeine to deal with the headaches and vomiting, but it’s barely keeping it at bay. Not sleeping, even though I’m knackered.

Diddly, I would think it was the growing cancer burden that brought on the Lupus - Lupus is an auto immune disorder, so if your immune system was struggling to keep knocking off the cancer cells, it may well have been triggered to go mad and start attacking anything else in range! I had an auto immune response to the RSV I got in 2005, and my muscles were being eaten by my own immune system.

The tumours I have are two Invasive Ductal carcinomas, and one pre cancerous ductal carcinoma. Apparently it takes “many years” for it to go from pre to full, so obviously my body has been waging war on it for years. I expect that’s why that RSV (Respiratory Syncittial Virus) hit me so hard - I had so many lymph nodes swell up that I looked like the Elephant Man! All down my spine, back of my neck, my skull, my face, (Chipmunk features!) my legs, my arms, not just the usual armpits, groin and throat sceanrio! I lost 5 months out of uni with that.

I’ll keep you all posted with the MRI results. Surgery currently booked for Aug 6th, as have to see recon man twice before, and he’s on hols. Seeing him 24th and 31st July.

Does anyone know what grade tumours go up to? What’s the highest grade you can have?

Many many thanks for the support here, it really does help,
Nikki :slight_smile:

PS I keep focussing on “New Boobs! New Boobs!”

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Hey Angel, the fact that you and other people had various symptoms before being diagnose with BC is very interesting! As you can see from my profile, I had two cancers in two years. I too had lots of problems in the couple of years before the diagnosis (lots of infections, cold flu etc etc) but I thought it was because I was taking care of my mum who was very ill and I was exhausted. Also I could not sleep and I had daily diarrea. Now, after the second surgery, I can sleep and the chemo improved my intestine (after I finished it, during the chemo it was a disaster!) I remember Pavarotti (who had surgery for pancreas cancer) said something similar about not being able to sleep before the cancer was diagnosed. Cancer cells produce lots of factors that can affect the body, there are well known effect of the appetite and food intake, and on the immune system as well, but many other things are not well known. It would be interesting to investigate these things in this site, since there are so many cases.
Regarding your questions, cancer grade goes up to 3, that means cells are very undifferentiated and grow usually faster than grade 1 or 2.
Regarding the boob, I haven’t done the reconstruction yet because I had radiotherapy the first time, so they need some time for the skin to recover, but I got used to my new shape, so I am sure you will get used to the fake nipple, it just takes time!
I too keep focusing on "New Boobs! “

Let us know how things go!
xxx

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Hi Nikki

Sorry that you had to join our group because of your diagnosis. I think most of your queries have been answered by the girls here, so hopefully this will help you. Just a few more points, which might help:

  1. Chemo - everyone reacts differently to this. Some girls have chemo before the op to shrink any tumours , but most have chemo after the op (this is called adjuvant thereapy). It normally takes about 6 months and most girls do feel fairly poorly, so don’t go to work regularly, but there are exceptions. You might be able to carry on with your studies in the week before the next chemo session, as this is when you are most likely to feel a bit better.

  2. Reconstruction. Depending on what type they have suggested for you, some have it done immediatley, and some a few months or even years later. The reason it’s often not done immediately is, that you might need radiotherapy treatment, and some reconstructions don’t take too well to be radiated. I had immediate recon after my first episode of BC with an inflatable saline implant. They put a small port under your arm (under the skin) and then over a period of months inflate the new boob slowly with saline solution. The reason they do it slowly is to give the skin a chance to stretch (think how a bay tummy growth and stretches during pregnancy). Once they reached the desired size, you can have a new nipple reconstructed. However, I declined radiotherapy because it would have affected the reconstruction. I was very happy with my recon and had no problems at all.

When I got BC again ( sorry if you don’t want to hear this), I sadly lost my reconstruction and had to have a mastectomy. But 2 years on I am coping really well, have bought loads of lovely lingerie and bikinis and don’t think anyone can tell that I had surgery. Obviously it changes your body image, but I am lucky to have a very supportive partner and losing my boob has made no difference to our ‘personal’ life. The other thing is that I got over the op amazingly quickly, out of hospital after 4 days, only paracetamol painkillers and back to normal within 2 months. (driving after 1 month).

  1. Feeling ill before dx: Personally I did not feel unwell before either the first or second dx, although I was suffering from dreadful menopause symptoms, and that obviously was annoying and disturbed my sleep and affected moods etc. But I did not get any flueye infections etc. and am lucky that I have had no problems with infections etc. since my chemo. I have suffered more from ‘tummy’ upsets and IRS since chemo, but that might be due to stress (worrying about the future etc.) rather than the chemo and/or cancer. The hormone drugs I am now taking (Arimidex) do have serious side effects and I am considering stopping them, but that’s a decision you would have to make in conjunction with your GP.

Hope the above has been f some help, dear Nikki.

Best of luck with your op and recovery.

Hugs

Birgit

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Hello everyone,

This is my first posting but felt compelled to write after hearing about other peoples viral involvements.

I had Epstein Barr virus in September 2006 and immediately started suffering pleuritic chest pains and stabbing neualgic pain down my right arm. These have worsened over time to a stage where I could no longer work and the whole of my shoulder became involved.

I have been told by different doctors that I was suffering from “soft tissue damage”, “rotor cuff damage”, “impingement” and “inflamed trigger points”!

Nobody had really helped me apart from prescribing painkillers then I found my lump. I was diagnosed with invasive lobular in my left breast with “suspicious” cells in my nodes. I am having my CT scan on Tuesday.

I also wonder if the cancer was already present in my body and the Epstein Barr activated it. I do think that the virus did pick up on all the existing faults already in my body and aggravated them. This caused me such pain that I am sure it delayed me spotting the lump.

These viruses have a lot to answer for!!

Thoughts…Jean

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Hi everyone, thanks for your reply. Been off site for a while - suppose it’s a form of denial…for me, this thing is like a monster that spends most of the time asleep, but wakes up two or three times a day to belt me round the back of the head while hissing “You’ve got cancer”. Then I’m scared, then I cry, then the monster goes back to sleep, laughing, and then I rage and rant. Does everyone do this?

The MRI results showed nothing in the other boob, and an unexpectedly normal brain! Which is all good, except we’re still stumped and back to square one with the diagnosis for all the underlying probs, which have been going on for more than 25 years, so not ALL of it can be put down to Cancer-War. I do think tho, that as has been said here, much much more research needs to be done on the subject of “non-specific”, bizarre ilnesses pre-cancer dx, and all the viruses and infections that can precede a dx. I don’t think they trigger the cancer, I think the immune system gets overloaded with trying to keep the cancer at bay, with the result that the other viruses that would normally be thrown off, get in due to lowered defences - like an exhausted army simply being unable to defend the battlements!

Quattro - Thanks for the insight into the not sleeping thing - I didn’t know Pav suffered the same, nor anyone else. I DO know about the appetite though! For ages mine’s been erratic, bouncing from tiny/non-existent to raging Fridge-Raiding and being ridiculously hungry ALL the time, and from about two months before my dx, when I had no idea at all about cancer, it’s stayed very VERY high, but with weight loss instead of the expected gain. I think it’s my body’s way of getting the extra energy it needs to produce antibodies etc and Fight The Good Fight, because I’m very specifically craving protein (peas, eggs, meat) and carbs - even mixing myself chocolate buttercream icing from cocoa, butter, and icing sugar! Has anyone else had those sort of cravings?

I’m having simultaneous reconstruction, and we don’t really know about the chemo yet, won’t do for sure until my armpit has been removed and inspected microscopically. Initially, the radiologist said Defintely Chemo, then the breast surgeon said they were hoping to avoid it, but today the other BCCN said she was 99% sure I WOULD have to have it. I got as far as discovering the Lymphodema bombshell two weeks ago, which was just awful, then today they dropped another one - they might want to remove my ovaries as mine is oestrogen +ve, or I could “merely” have them “suppressed” with hideous drugs instead. Marvellous, isn’t it? As if dealing with having cancer isn’t enough, they go and find you even more monsters to cope with.

Rifftikins - Hi :slight_smile: As above, I don’t believe that any of the viruses trigger cancer. Cancer is itself a virus (probably/possibly related to the wart virus, since that also screws up the growth rate of new cells by making them multiply inappropriately), and I think the immune system is simpy overwhelmed by trying to defend against the big invader, cancer, to be able to cope with the less threatening (in terms of life) viruses. Cancer cells exist in all of us all the time, but are normally kept in check by NK (natural killer) immune system cells, and others. Logically, at some point, they must get overwhelmed, and that leaves a gap for other stuff to get in and cause probs, and obviously if that’s the case, then it explains why so many of us are so ill pre-dx. My Mum was also ill with a wild variety of unidentifiable illnesses for several years before her dx last year, and although my GP reckons a max a 4 years to have been fighting it before the dx, I don’t see why it can’t have been longer given that I have studiously avoided oestrogens in foods or in HRT since my mid 20’s, knowing the female cancer risks attached to them as I have done for a long time.

Grade 3, eh? They now tell me (it seems to change at every meeting!) that two of the three lumps are grade one, and the one that I found, the big one near my armpit (the axillary tail) is grade 2, intermediate. I don’t like this!

Birgit - thanks for all the info :slight_smile: I’m having simultaneous recon, and the fillable-emptyable implant, with a nice long wait of around a year (if they do the chemo) to have the “good” one matched up. I’ve asked for better boobs than I currently have - they’ve changed a lot since the dx, funnily enough - my fantastic bf says they’ve shrivelled in shame at what they’ve done to me! Bloody plastic surgeon man, who refused to let me say anything at our first meeting, and told me I was only able to ask questions at today’s meeting, made me feel fairly bad about this - he said, “Well, let’s not forget that the IMPORTANT thing is to get rid of the cancer. the rest is secondary.” I said, really upset by that, “Oh, I can assure I HAVEN’T forgotten about the cancer!” (I mean, No shit Sherlock, really??? And there’s me thinking I’m just grabbing a freebie boob job on the NHS!!) “Please don’t think badly of me, this is the one thing, the one positive I’m able to make out of all this at the moment, and I’m not dealing with having cancer at all well, so please, allow me that.” I mean, MEN! How insignificant would he think a penis reconstruction would be to him if he had willy cancer? I bet he’d see it differently then!!

I’m in awe of women like you, who can learn to live happily with a mastectomy and no recon, as you did second time round, Birgit, but I really hope that doesn’t happen to me. I also hope I don’t have to have chemo, and I thank you for the info about some girlies doing ok, my GP actually thinks it will help me, because he thinks there’s an auto-immune component to my underlying illness, but I don’t necessarily agree. I don’t think there’s an auto-immune thing going on with me aside from my immune system going into overdrive in response to the cancer. Flipping BCCN today was adamant that chemo is a definite. I cringe. I don’t mind losing my head hair, I really (bizarrely) couldn’t care less, but what I AM concerned with is the loss of eyelashes and eyebrows! What a stupid thing to worry about!

Hope you all get to read my reply - sorry it’s taken so long.

Oh, has anyone been to The Haven?

Love and light,
Nikki xxx

18

i am so sorry all you lovely ladies are going through all this, i will hold you in my prayer, you all deserve an angel on your shoulder,
i,m awaiting my second appt at breast clinic,
1st time tolf it was fluid cyst, but alas the lump has not gone ithe radiologist wanted me bk 4 weeks later which is a week thurs,
i,m extreemly worried, i,m 54yrs and post menopause for over a year i have seen that folk my age dont normally get cysts,

this darn thing is getting uneven, so i,m praying it will be benign, i have enough ill health so dont need anymore

i have found this site wonderful and very supportive,

i,m sure you will all go from strength to strength

love
cee