Hi @boz
Similarly I had surgery, chemo, radiotherapy for what was thought to be early stage TNBC with no lymph node involvement. I was hospitalised with infected diverticulitis during the chemo and given a CT scan. Incidental finding of a liver met, assumed to have travelled through the blood stream. Without that illness I would not have known until it was far, far too late. With treatment I have achieved remission and have been stable for a year. Hope your lesion is either not cancer or is able to be controlled.
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Hi warmfuzzies
2 and a half years down the road from initial surgery (double mastectomy out of choice - different cancer each breast, strong fam history) both Grade 2, ER/PR 8 Her2-. One node involved but NOT the sentinels; it was another one that my vigilant surgeon spotted during mastectomy op and harvested to check.
I was given the choice of just radiotherapy to the affected armpit or surgical axillary clearance. I opted for the latter for a proper inspection of nodes, rather than zapping the area blindly without knowing what I was dealing with. Turns out, no other nodes involved … but I couldn’t have known that any other way. (I went on to develop lymphoedema in that hand/arm, either from one of the surgeries, or from the radiotherapy I received to the left chest wall which I did have to zap the overall area of the breast tumour, but that’s just a smallish risk I fell foul of.)
However, the one affected node found initially DID have extracapsular spread (broken through outer layer) and there was also lymphovascular invasion, so naturally, I too envisage escaped cancer cells swimming around or lying dormant elsewhere. I’ll have a lovely day with friends one moment and believe the odds of ‘no recurrences’ are good, and another day I’m convinced it is going to come back for me and I’m on borrowed time. There’s just no way of knowing, however much we agonise.
I tried hormone therapy for 10 months but found the side effects too debilitating and decided to ditch the drugs. (Like “shade”, I’m also averse to taking even the mildest.)
Also, mine being lobular breast cancer (approx 15% of all breast cancers, 2nd most common), there is much less understanding of its biology (because it has been shamefully under-researched) - so different from ductal forms - and therefore, no specific drug developed for it, so quite possibly unprotected-against by the existing hormone suppressants anyway. So I am not even throwing that at possible escapee cancer cells.
This may be way too much info at this stage, and perhaps not comforting, but I believe it helps to gather others’ experiences and to know you’re not alone in your anxiety by a long stretch ! Even the most pragmatic of us experience terror in the night. Dig in, grit your teeth and focus on each step of your treatment for now. Practical action is the name of the game at the moment. Focus on the fact that you’ve started to tackle this unexpected problem. Get that behind you at least !
Wishing you all the very best 
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PS
To address your initial concerns about scans 
I’ve asked my consultants 4 times (in West Sussex, UK) for an MRI to look for mets in my sore rib, but they insist this is not appropriate, even though I know which area I want them to target. This issue is very much a postcode lottery, it seems, from other threads on here.)
(All cancers were missed on annual mammograms and ultrasounds, even up to diagnosis which was only made when the first surgeon did listen to me when I reported breast tenderness I’d suffered from for decades and ordered extensive biopsies. Such is the nature of the discreet lobular ‘webs’. Not that I have that mammo option anymore anyway.)
I had the 2nd of 2 nuclear medicine full body bone scans (requested by me) last week; results awaited. But I don’t want to keep doing this as an annual check, because of the cumulative radiation involved.
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Hey @MistyK I like to understand what Im dealing with which is what leads me to asking questions. I didn’t know about LVI until this thread but I havent even gone to check my letter yet, I expect its written on there somewhere.
I’m slightly horrified to hear the stories of the mets and lesions that are being found by chance although I do understand the reticence for the HNS to be scanning everyone.
Im feeling like the only real options to have an annual full body scan to try to catch any lesions early enough to be able to treat them. Often cancer doesnt hurt until its too advanced (as far as Im aware anyway).
Other than this is seems we just have to try our best not to live in fear - Ive no clue how to do that!
Im going to speak with oncology first as I have my first appointment on 3 March and see what they say about potential spread and risks. And I’ll plod my way through the next 6 + months of chemo and radiotherapy. I dont know whether to have all my lymph nodes removed… most people seem to not have much involvement beyond what is initially removed but you don’t know that unless they remove them all but then you have high risk of lymphodema.
So apart from the onbvious cost involved its a choice between getting lets say an annual full body scan to rule our random mets or catch them early BUT have increased risk from too much radiation (Im guessing that causes cancer too!) or we take our chances in the wild and hope for the best.
Honestly, could this situation get an sh*tter?!?!
Good luck with your bone scans, fingers are definitely crossed for you
xx
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Hi
Thanks for acknowledging.
I did not feel ill when I was diagnosed. (Long term lethargy almost certainly attributable to the fact I don’t get enough exercise and have a shocking sleep pattern - a night owl who finds it nigh on impossible to break the habit, but I MUST keep trying. Bad for all sorts of conditions.) It was just a pea-sized lump I felt (the lesser of the two cancers), same as what had always turned out to be cysts before. From there, the investigations grew.
As I had full mastectomies with clear margins, I can only hope the LVI (in the tiny lymph vessels around the tumour) was all dealt with … but to be honest, I’m not sure if cancer cells could already have entered the lymph drainage system, which then interfaces with the blood stream thus carrying cancer cells around my body. Particularly because it obviously did reach my greatly affected one node somehow.
My best advice is press all your uncertainties, fears and confusion on the consultants (in the early days, while you have their fresh attention) in the form of short, succinct questions. Bullet point each concern on paper to take into the meeting and try not to let them brush you off, deviate or sidestep the question. Include the request that they use and explain the NHS Predict Tool on your data. It’s a stats tool that shows the likelihood of dying of something other than breast cancer. It factors in the various treatments you might have to show how much impact that has on your percentage. It puts things into a more positive perspective when you realise the chances of that is much higher.
From my perspective, there was never enough of the science discussed. I need to know the mechanics, but I got beaten down (and I’m no pushover) trying to get any deep conversation out of 4 oncologists. They’re too busy dealing with the steady stream of new referrals / cases and weren’t very good at hiding their impatience with me. Gee, thanks.
You’re unlikely to get granted annual full body scans unless you have symptoms (it’s a vicious circle) … unless you hit the jackpot in the postcode lottery. I just kept being told an MRI was not the appropriate tool to find recurrence / mets, and yet I know someone who was getting them frequently (instead of the radiation-using scans), but maybe only once she’d already been found to have skin and bone mets and was Stage 4. She is surviving through a chain of different treatments.
Re lymphoedema, the risk is not very high (10 - 20%, often not until 10 - 20 years later). I was just unlucky to get it 6 weeks post surgery. (I was actually more angry about that than the cancer, which I was half-expecting re high incidence in my family.) After several months of some excellent guidance, trying out various treatments on the NHS from specialists in the field (and from private practitioners whilst I waited on NHS list), and (my extravagant choice) a £1,000 home pneumatic lymph drainage machine (inflating sleeve which simulates manual massage to push the lymph out of the arm), it all settled back to a very minimal, imperceptible puffiness. Now, if I’d had a crystal ball …
ASK if radiotherapy carries a similar, lesser or no risk of lymphoedema. I can’t remember.
PLEASE fact check all my recollections for accuracy, with the professionals and reliable, renowned websites of large medical associations. I’m sure anyone on this forum who notices an error/inaccuracy they will flag it up. That’s the one positive of being in this hateful ‘club’, the brilliant support.
You will eventually weary of the panic and horror. It’s not sustainable. You will actually become tired of it. It becomes more of a background, if continuing, concern / awareness. Don’t forget that this is still new and shocking for you. Take strength from knowing we all started there.
You’re right, this situation we all find ourselves in couldn’t get any sh*tter ! (unless of course you lose your absolutely adored and beloved feline furbaby to cancer a couple of years later, after he got me through the dark days 
)
Thanks for the luck 
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@MistyK thanks for the extra info and good advice. I’ll push the oncologist on these questions and see how far I get.
I guess it’s reassuring to hear that the panic will die back. I can see this isn’t sustainable but it’s why I’m trying to find peace in scans. Doesn’t seem like peace in relation to health will ever happen again. I’ll learn to live it it I’m sure.
In the back of my mind I have some blood tests in the last 2 years that showed odd markers. One lot on my kidneys 2 years ago and my liver last year. They did some investigations (tbh I can’t remember the details now) couldn’t find anything and just repeated the tests till the numbers settled.
Health anxiety is my newest friend and she’s got me up all night tonight! Oomph
Sorry to hear about your cat. I have 2 and one is definitely an emotional support moggy. He’s a great comfort at the moment but hes getting old.
Xx
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Now, we really must get some shuteye. (I do all my admin in the middle of the night. Bad girl!)
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You can do a liquid biopsy, which is a blood test that sees if you have cancer cells remaining in your blood and if those increase or decrease over time. There are quite a few labs who do it but you’ll have to pay for it yourself most likely. Datar Cancer Genetics is one of those. I did it and it shows how many circulating tumor cells and what if any mutations they have. You can repeat this test every 6 months or so and if there are any changes, then that means something might be happening. Research this! It’s going to be common place to do these in the near future. Then there are integrative clinics that can further boost your immune system and even eradicate some of if these cells with high dose vit C IV therapies and quite a few other ones. So there is hope and you can totally be proactive.
Hello @warmfuzzies - I totally understand your anxiety - I am feeling the same. I found a lump, mammogram found nothing, all “clear” they said. They had offered me a follow up mammogram in 1 year but I insisted there was a lump so they did a CT scan, which was inconclusive. So a biopsy was taken and I was asked “where do you think the lump is?” which they couldn’t locate using the CT scan and I was referred for MRI. where a 3.2cm tumour shone like Blackpool illuminations. Thank goodness I persisted. Grade 3 Her2 Pos, hormone neg, highly invasive tumour. Now after chemo, surgery (partial mastectomy with sentinel node biopsy - 2 had apparently been affected but responded to the chemo), radiotherapy x 25 and almost finished immuno/targeted therapy I asked about follow up only to be told I would be offered a mammogram. I could not make the registrar understand that I have no faith in mammograms which she countered with “it’s protocol” several times. I too have been looking at private scans but unless you are able to travel to areas close to London you have to be referred by a GP or private consultant which means they get the results. I am considering going to London from the Midlands as I can make a private appointment at one of several places and be handed the results. I will be 75 in a couple of months and need to build my strength back up to pre-chemo levels. I am very much aware of NHS costs: I retired from a very senior nurse position after 48 years. Knowing your body is essential but the system nearly failed me due to my tumour being “mammogram occult” i.e. hidden and I believe from me initially finding it to having the MRI it had at least tripled in size. I am a practical and resilient woman but I am tempted to try tears and the mental health angle regarding follow up mammograms. I have a manipulative sister who always turns on the waterworks and has had numerous tests for numerous ailments over the years which have always come back clear. I’m off to practice in from of a mirror!!! I kept a diary of symptoms and feelings which I found invaluable on the days I felt low during the treatment cycles. I’m sorry I can’t reassure you but I can empathise with how you are feeling. I hope your treatment goes well and is effective with as few side effects as possible.
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Hi @pinklizzie1 your story shows that we know our bodies better than anybody and persistence pays off. I found a lump in one breast and then an MRI to size it put a spanner in the works and found another primary tumour in the other. It wasn’t seen on the mammogram. I’ve had a bilateral lumpectomy and have annual mammograms, I asked if I could also have an MRI because of my situation and was told no. I then said well it didn’t find one tumour and was told mammogram are the follow up.
I found it hard that both my boobs had let me down and struggled to check them for quite a while. But now after surgery, chemo, Herceptin and radiotherapy and with time, I’ve been able to do regular self checks.
I’m sorry to hear about your sister, there are so many people out there if you mention your diagnosis or side effects they then start on about they have something similar. I want to shout ‘No you don’t, you’ve not had cancer or the treatment so how can you know how I feel’. But my usual reply is to smile politely.
As you are also HER2+ there is a very active thread you may want to join
Take care
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Hi naughty_boob! hahaha My youngest sister is amazing. When I was diagnosed with hip arthritis (which was severe and operated on within 3 weeks, but I have a high pain threshold so it came as a shock!) she said she also had severe arthritis. 10 days later she contacted me saying she had cured herself by taking glucosamine. When another sister was diagnosed with type 2 diabetes youngest said she had type 1 but instead of having insulin she stopped eating chocolate which cured her. When I was diagnosed with breast cancer she said her doctor told her she had liver cancer. 6eeks later it was gone due to her detoxing her body with lemon and ginger water. The list goes on. When confronted with evidence to the contrary her reply is usually “well that shows just how much you know”!!! Thanks for the link to the HER"+ thread. I understand how difficult it is to re-start checking again - I’m at that point so need to recommence self checking.
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It seems like your younger sister at least makes you laugh. My mum had a sister exactly the same, she always had something worse than everyone else but in reality she was the healthiest of the lot!
I hope you come and join the HER2+ buddies for the rest of your treatment. Hope to see you there.
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I completely hear you and understand exactly where you’re at. I was told also that I would need a lumpectomy and 5 days of RT too… until my first surgery. They took out a small but her2 positive tumour. It then escalated to: a second surgery (and still didn’t get clear margins), 10 days of RT, 4 months of chemo, 6 months of herceptin injections and 3 years of bone infusions! Amongst all this, I was also diagnosed with a brain tumour (originally told it had spread to my brain) Such a rubbish year last year! BUT I’m getting on with my life now… I came to a realisation that ANYONE at any point can have a recurrence or a completely new cancer. That’s EVERYBODY! I’ve ditched alcohol but my diet and lifestyle has stayed the same (healthy) and I’m grateful to get a second chance at life. Over time, I’m sure you’ll find that the anxiety eases… have you used the Penny Brohn website? Lots of stuff on there that’s useful. Support groups too can be great as people ‘get it’. Good luck to you xxx
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Hello there,
Firstly don’t panic. Things are not as bad as they will feel right now. I was where you are now about 4 years ago. Absolutely get a scan. A private CT scan at your local private hospital will cost you around £600 and is worth every penny to know what you are facing at the very first and best opportunity to make a full recovery even if the immediate treatment seems very scary. You are giving yourself the best chance to know what you are facing at a very early stage.
I was told no further scans were necessary when I was first diagnosed, with a very similar situation to yourself. I didn’t push for any further scans-it was during Covid and hospital visits were difficult. I so wish I had because I discovered that I actually had metastatic cancer last year. I had no symptoms, was picked up for totally different reasons, despite clear mammograms.
However, I was lucky because it was found before it had spread too far. I now live with it, controlled, on good treatment- and just have to hope that it stays that way! But if I had pushed for scans sooner it would have done less damage before it was found.
Ask your consultant for a referral for a private scan if they won’t let you use the NHS. Phone your local private hospital to ask what consultants they have for breast cancer and give that name for your GP or consultant referral.
I really do hope that you follow your instict and get this sorted. It is really scary, but whatever the outcome, life will go on and you will feel better soon.
Good luck with this!
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