Breast Cancer Now Forum

And finally… The excellent coppafeel.org categorically list pain as a recognised symptom: ‘Constant, unusual pain in your breast or armpit.’ https://coppafeel.org/your-boobs/ It’s a shame that there is not more consistency of message on such an important issue.  Pat xx ... View more

Hello @Blackcat182  I’m sorry that you too have been swept up in this. It doesn’t exactly inspire confidence in the system, does it? This at a time when, above all else, we have such a strong need to know that our concerns are taken seriously and to have complete faith in those who are responsible for the the smooth progress of our treatment. I notice that breastcancer.org - an American organisation I believe - categorically include the presence of breast pain as a possible symptom of breast cancer. It’s often said that where America goes we inevitably follow, so let’s hope…  https://www.breastcancer.org/symptoms Pat x ... View more

Hello @Jenniferann  Firstly, I am so sorry you find yourself in this situation and hope that the results of your scans are favourable. Please let us know.  I too had a supposedly ‘clear’ routine mammogram just a few short weeks before I discovered the lump. And, like you, was assured at my first hospital appointment that the presence of pain coupled with a clear mammogram meant that it was ‘unlikely to be anything sinister.’ Cue for an unhurried delay in organising further tests. In fact I had a Grade 2 IDC that had already spread to the lymph nodes. Incidentally my pre-surgery ultrasound indicated that my lymph nodes were clear.  Despite these worrying diagnostic failures I do hope that you can now place your faith in the team treating you, empowered by the fact that you have learned from the past omissions/mistakes of the medics and have the confidence to assert that you know your body best and are the ultimate advocate for your own health and care. I suppose it is impossible to say with any certainty whether the original pain of five years ago is definitely linked to the tumour you have now, but I do hope that you are able to let go of any energy-sapping negativity and throw all your positivity and resources into making a good recovery. Now is not the time for backward looking ‘if onlys.’  Ever onwards. But perhaps let’s both keep banging away loudly at the fundamental message that pain should not be ignored in the symptom criteria for diagnosing early breast cancer.  I wish you the very best of luck with your treatment!  Pat x   ... View more

Hello @Gertie4  I have now had three of the proposed six six-monthly Zoledronic Acid infusions and I can honestly say that I have had virtually no problems at all with IV Bisphosphonates. The initial infusion produced mild flu-like symptoms for a day or so but I was told that subsequent treatments rarely cause any side effects at all (something to do with T-Cells being activated first time round) and I have certainly found this to be the case for me personally. Another consideration in favour of IV treatment is that you at least get a blood test a couple of days before the infusion and in these Covid days of minimal, if any, active follow-up, I have certainly found just that small input to be a very welcome reassurance.  Well done if you have already completed a few months of daily Ibandronic Acid. You’re clearly made of sterner stuff than I am! If I could not sit down with my newspaper and two cups of tea first thing in the morning, I think I would have thrown in the towel by now…  Good luck with whatever you decide. Pat x ... View more

Yes, apparently I am about to make a fortune on bitcoin too. It’s all quite depressing that our safe space has been flooded with such potentially sinister tripe...  ... View more

Hello @Treas  I’m actually stunned that anyone should be expected to return to work only ten days after a mastectomy, let alone when recovery from surgery is being hampered by infection. I had a mastectomy sixteen months ago, followed by full lymph node clearance two months later. My treatment and recovery was as routine and uncomplicated as these things can ever be but, despite my fairly unflappable stoicism, there is no way I would have felt ready to return to work so early. So be gentle with yourself and let yourself off the hook. Of course you’re not ready! Make sure you do those exercises religiously and if at all possible get out there for a walk every single day, however short. Getting fresh air and keeping active really does help the healing process, both mentally and physically. I’m not fond of taking painkillers routinely (are any of us?) but I was advised that paracetamol is best taken regularly so that the pain is not allowed to escalate, when it is harder to bring it under control. I reserved the limited supply of Co-codamol, given on discharge from hospital, as my bedtime treat.  Good luck with your results next Thursday, and with your ongoing treatment. It is still early days for you but things will improve. Pat x ... View more

Hello @JIF  Goodness, Jennie! What a rational, eloquent and generous post from someone who clearly has so much on their plate. I am afraid I cannot offer any helpful or informed answers to your questions and observations, but neither could I pass by without acknowledging your predicament and offering a virtual galvanising hug. I do hope that others will soon be along who are able to give more helpful advice.  Good luck with your treatment and stay the powerfully strong and positive individual that you so clearly are. Love Pat x   ... View more

Hello @SUSE  Whether or not it’s ‘normal’ to have ongoing discomfort after this period of time I couldn’t say. But I can say that I am right there with you!  Our paths are very similar. I too had a mastectomy in December 2019, followed by an axillary node clearance two months later, so two lots of surgery. I also swerved chemo but had radiotherapy and the Nasty One, Anastrozole. So our timelines run pretty much parallel. I still religiously stretch, massage and moisturise every day but there has never yet been a day when I have not experienced discomfort/ pain. Some days it is worse than others, but always, always there.  Follow-up for me in the time of Covid has been pretty much non-existent. I hope you have fared better. I saw an oncologist only once, on the day the first Lockdown was announced over a year ago. He said, “See you in 3 months time... “ And that was it. I haven’t seen a living, breathing doctor since. The couple of phone consultations I have had with some anonymous member of the team have been less than helpful. The only advice I have been given is to take paracetamol: ‘some women just DO suffer from ongoing chronic post-mastectomy pain.’ I feel that the discomfort and weird sensations that I have are more related to the lymph node clearance and are probably due to nerve damage. My BCN suggested I try Amitriptyline and I did take a starter 10mg dose of this for a month. It gave me a dry mouth and made me a bit dozy but didn’t touch the pain. Perhaps I should have persevered with a higher dose but I really don’t want to be on any more medication, particularly one that takes the ‘edge’ of life. Like you, I try not to allow the background discomfort to affect my everyday life, but I find it wearying to say the least. I have read that some people can suffer pain as an ongoing side effect for months if not years. Rather than finding that depressing, I prefer to think that it suggests there is still the prospect of improvement, even this far down the line. Good luck!  Pat x ... View more

Hi @CeliaRose  I must have missed this discussion when you originally posted. Like you, I made the decision not to have chemo. My Predict score for chemo benefit was 3.3% at 10 years. The oncologist said that with a score below 3% the risks of chemo would probably outweigh the benefit, a score of 5% and above would definitely see chemo recommended, and then there is that troublesome grey area in the middle, where no one helps you out, that causes so much agonised soul-searching and head-scratching. I say that ‘I made’ the decision not to have chemo but I do feel that I was rather steered away from it. My one and only meeting with the oncologist was made on the day that the first Lockdown was announced with all those in the consulting room expecting a tsunami of Covid patients imminently and with the chemo suite of my conveniently local hospital being moved 20 miles away for the duration of the crisis. So there were outside influences at play. I had previously been of the conviction that I would definitely want to throw absolutely everything at it. I had a mastectomy and a SNB where the one node removed proved positive, despite pre-surgery scans suggesting otherwise. I joined the POSNOC Trial and was randomised to the surgery arm so later went on to have a full axillary clearance. Perhaps if I hadn’t had the lymph node clearance I would have been more anxious about declining chemotherapy. I had Radiotherapy and have now been on Anastrozole for a year. And so far, so good. I certainly had reservations about declining chemo and fretted about my decision in the early months. But I am acutely aware that chemo is not the magic bullet for everyone and I am gradually allowing myself to let go of any lingering doubts or regrets about my decision. None of us are blessed with the gift of hindsight. We all make these awful time critical decisions with no dummy run. I have chosen to let myself off the hook, put my trust in the team that treated me, own my decision, live in peace with it and move on. The nagging doubts do resurface from time to time but I think that comes with the territory, whatever the choices we have made.  Well done for making a difficult decision that works for you and good luck with the rest of your treatment.  Pat x ... View more

Hello @NarniaGirl  I agree with you, this worrying link between bisphosphonates and osteonecrosis of the jaw is a particularly panic-inducing one even in the most unflappable and stoic amongst us. What is it about teeth that should make them the stuff of nightmares?!  However, from my understanding, this particular side effect is incredibly rare. But, as with all possible side effects, we have to be made aware of the risks however remote, then duly take responsibility and sign on the dotted line. I think the real problem with osteonecrosis is not so much the infinitesimal risk of acquiring it, but that once acquired it is incredibly difficult to treat. Hence the probably unbalanced hefty sense of doom. The good news is that you are having your extraction carried out in hospital by experts who are very aware of the condition and alert to the risks. It seems that far too many community dentists have not the first idea about the medication and the implications of invasive treatment. At my last Zoledronic Acid treatment the nurse explained that any dental treatment should not be given within eight weeks of an infusion, either before or after. So if you are having the usual six-monthly schedule that would give you an eight week window for treatment, after which you would again need to be signed off by the dentist as being fit for further bisphosphonates treatment.  I do agree with you about asking more thorough questions and seeking advice before starting treatment. It’s something I didn’t do and wish I had.  I hope someone else comes along who is able to offer you far more informed and practical advice. I wish you lots of luck for a totally straightforward procedure and give you a a bit of a wrist-slap for googling about anything at at all to do with teeth!  Pat x ... View more

Just a galvanising hug, @weejeannie , albeit a very gentle one. I am so sorry you are having such a torrid time. I am relieved to hear you are now in hospital receiving expert care and attention and really hope they get you sorted soon. Pat x ... View more

Hello @LouJP  I can certainly identify with your ‘weird’ discomfort.  I had a mastectomy in December ‘19, followed by a full lymph node clearance in February ‘20. A year down the line, I still feel that disconcerting sensation you describe. Some days it is downright painful and debilitating, other days just a nagging discomfort. But always there, and so alien it is almost impossible to describe. I feel as though there is something preventing me putting my arm tight against my side, as though I am clutching something under my arm whilst wearing a barbed wire vest. It interrupts my sleep and makes me generally crotchety. The pain across my main mastectomy scar has gradually lessened and I continue to hope that this weird nerve pain/ polystyrene-like numbness under my arm will gradually subside too.  Sadly, I can offer you no advice or solutions. But, yes, I am certainly there with you!  Pat x ... View more

Hi @ginge26  Our stories are very similar. I too was finally diagnosed November 19 after finding a lump, following a routine ‘clear’ mammogram just a matter of weeks earlier - 18mm, grade 2, just below the nipple. The tumour showed up readily on the pre-surgery mammogram so it wasn’t one of those pesky ones that are hard to spot. Ultrasound suggested no lymph node involvement but this proved not to be the case. Diagnostic failures like these do little to inspire confidence. Like you I had a mastectomy, followed two months later by full axillary clearance.  Your Annual follow-up sounds uncannily similar, and just as cursory, to mine. The lack of aftercare, particularly in the time of Covid, is depressing to say the least. It sounds as though you could have done with far more attention and the positive reassurance of a proper face to face consultation and physical exam. Couldn’t we all? I am so sorry that you have lost your equilibrium and been so painfully derailed.  The idea of you stopping your tablets alarms me far more than your prodigious weekend bender! (I’m secretly quite impressed...) You seem to have suffered a bit of a crisis of faith in the whole system and during your spectacular wobbly have thrown all your toys out of the pram in a self-destructive binge. I do hope that you find the wherewithal to gather them back up again. It is difficult to not be concerned about the possibility of a recurrence ( after all it’s virtually impossible to be simultaneously carefree and sensibly vigilant) but you could be spending a priceless period of good health worrying about something that may never happen. I try to take all statistics with a substantial pinch of salt. They’re talking about somebody else, not me.  I do hope that you manage to reset your positivity and resolve and find a way to ground yourself, change your negative thinking and take full advantage of the good times afforded by your successful treatment. I wish you good luck in abundance.  Take care, Pat x ... View more

Hello TUL24 & Jaybro May I just add my twopennyworth on the whole sticky question of lymph nodes, statistics, averages... I had a full axillary clearance following a mastectomy after the one sentinel node removed proved unexpectedly positive; the ultrasound had suggested otherwise. When I received my results from this second surgery, I was aghast to learn that only a further five lymph nodes had been removed. I knew that the average number of axillary nodes is between 20 - 40, so I immediately jumped to the conclusion that a large number of lymph nodes, all positive of course (!!), had been inadvertently left behind. The surgeon assured me that he had competently performed a full clearance. He went on to say that the fewest number of nodes he had removed in such a procedure was three. The greatest number he had removed was sixty. All women involved were ‘average.’ Normal even. Perhaps some of us possess few lymph node clusters the size of plump grapes? Perhaps some of us have many clusters of little seeds? Should 10/30 positive nodes alarm us more than 2/6? I now choose to use this little story in my favour and have decided to take all statistics with a substantial pinch of salt. The extra seasoning can make them far more palatable.  Pat x ... View more

Hello grannyp I am really pleased to hear that you managed to have a reassuring and productive chat with your consultant and that you now find yourself on a more even keel. Long may that last; continual anxiety is exhausting.  I will be thinking of you and your second surgery tomorrow, hoping that all goes smoothly and your recovery is trouble-free. Just look forward to that first cup of tea post surgery. For some reason even hospital tea tastes like Nectar of the Gods at such times!  Good luck! I look forward to hearing of your future progress. Pat x ... View more

Hello again grannyp If I appear to be sensible and rational it is because I am in the fortunate position of now being able to look back and take stock. You are still in the eye of the storm and it is difficult to do anything other than close your eyes and cling blindly on. I assure you that I was not quite so patient and accepting when I was in the maelstrom. You now have just a few days until your next surgery. Be gentle and generous to yourself until then. Allow yourself treats and nice little interludes. Make sure there is something special to look forward to every day. Simple pleasures make the world go round and we of the Covid Cancer Cohort deserve them in abundance. You will soon have your treatment plan and a more definite way forward to anchor and steady you. You are very nearly there.  Pat x ... View more

Hi grannyp  I am saddened to hear of your continued anxiety, having been cheered to see you rally and steel your resolve and positivity following your earliest posts. I SO understand where you are coming from with your frustration at this awful waiting. I have been there. My delays started right from the word go with an excruciatingly tardy referral and diagnosis process. I was reading fulsome reports on this forum of timely pathways and faultlessly slick procedures whilst sitting at home waiting, quietly despairing and chewing my own arm off to the elbow.  I waited almost ten weeks from referral to surgery. And, as you know, that is ten long weeks without treatment visualising the worst scenario. Like you, I then waited almost three weeks for results, where I learned that the SLNB had been positive. The pre-op ultrasound had sugggested otherwise. There followed another two months before further surgery for a full axillary lymph node clearance. Then COVID stepped in to further complicate the process. I had my one and only meeting with an oncologist on the day that Lockdown was announced, a surreal ‘Mary Celeste’ encounter when pandemic-modified treatment options were lobbed at me from a suitable distance.  I have found checking the Nice guidelines to be a depressing and dispiriting process. I know that I have slipped through the net on several occasions but I can do nothing about it now. I am now on the other side of all that so I choose to let it go and move on from here. I have accepted that the system is not always perfect, that some receive more timely treatment than others (it shouldn’t be so, but it is), that cancer services are struggling in a pandemic dominated arena, that guidelines are just that - not hard and fast cut-off points that signal definite triumph or disaster, and that everyone is doing their best in an impossibly  difficult situation.  I’m probably not sounding very positive. But positivity is what I want to give you. I want to give you a galvanising hug of solidarity and promise that you will soon be looking back on this unbearable period of anxiety with a sense of acceptance and equilibrium, knowing that your team have been thorough, are doing their absolute best for you, and that your future treatment is reassuringly mapped out. Your positivity hasn’t done a runner. It is just lying low for a while.  Do take heart from what Jaybro says. She always makes sense.  Pat x ... View more

Hello Lou Feeling Glum today, reading helped... And it was your excellent blog, the entirety of which I have devoured in one greedy sitting on a dismal Lockdown afternoon, which did it for me. So, a huge thank you! You write beautifully - articulate, eloquent, honest, engaging and funny with a staggering degree of self-awareness. I love your take on life. We are all supposed to have a book in us somewhere. You clearly have several.  Pat xx  ... View more

Hi Tomboy7 I can sympathise with your quandary. I too was offered the choice between mastectomy or WLE. In my case my tumour was virtually behind the nipple so, since the central part of the breast would have had to be removed, there didn’t seem to be much sense in preserving the rest. Your lump is higher so presumably the cosmetic outcome would be better and you would keep the all-important nipple. That may affect your decision.  Like you I am pretty average in the breast department - 36D. Unlike you, I suppose I have always been quite precious about my boobs. But, surprisingly, I now find that I don’t really care two hoots about having just the one. In the vast scheme of things it seems almost immaterial. Again like you, I was keen to get rid of the whole thing and minimise the anxiety and constant checking.  So I had a mastectomy without reconstruction and wear a prosthesis. I am in my mid sixties; I suspect I may well have made a different decision had I been younger. The silicone breast that is eventually supplied post-surgery is supposed to be the same weight and density as normal breast tissue. It is surprisingly heavy! But I try to persevere with it rather than use the original ‘softy/ comfy’ too often in order to hopefully ward off the posture problems you talk about.  Hopefully others will come along with experience of the other route in order to give some balance ( ie not quite so lopsided!)  Good luck with all your treatment. Once you feel comfortable with any informed decision that you make and your treatment gets under way, you will feel much better about the whole process. The truly AWFUL waiting part is behind you. Pat x ... View more