Breast Cancer Now Forum

Hi ruthie2 I found your post quite reassuring. I was beginning to feel as though I am the only one out here who has never been offered a scan of any sort. Just that ultrasound at diagnosis and CT planning scan for radiotherapy. Like you, I have never been given a stage but I am also a Grade 2 with lymph node involvement that hadn’t shown up on the ultrasound. I had a mastectomy for the removal of an 18mm tumour, followed by a full node clearance two months later. I was not given a baseline DEXA scan before starting Anastrozole either. I appreciate that some of my treatment has been derailed because of Covid but I also have the nagging suspicion that I have fallen through the net at times.  You appear to be far more philosophical and satisfied with your treatment than I have been. I propose to take a leaf out of your book and do likewise. If I can... Can’t help feeling the teeniest bit envious of the certainty, and hopefully reassurance, that would come with a full body scan though.  Pat x ... View more

Hi Tralala I hope I can copy the link successfully. I’m a bit of a dinosaur in that department. It’s called the Leisureform - Weighted Foam Breast Form (6110) https://www.nicolajane.com/leisureform-prosthesis-by-nicola-jane-6110/ Hope it works for you! x ... View more

Hi Tralala I agree with you about the silicone prosthesis - far too hot and heavy in this weather. Nicola Jane have a good selection of breast forms. I was originally given their catalogue by my breast nurse but they have a good website too. I have recently bought one that bridges the gap between the silicone heavyweight and the original comfy. It is lightweight foam with a silicone centre. I find that the best of a bad bunch, although most things feel like a barbed wire vest as the day wears on. M & S breast forms are very unyielding with uncomfortably sharp edges.  Sadly, nothing beats the comfort of a real boob, does it?    ... View more

I read your story with mounting horror, with my hand over my mouth. Then I reached the end and was punching the air in triumph and dancing round the kitchen with you! You have been through such a gruelling and horribly frightening experience. I hope you can now enjoy and savour your wellness and relative calm without too much nagging intrusion from those pesky demons twittering away on your shoulder.  A Never Say Never story if ever there was one. Thank you for sharing it! 💕 Pat x ... View more

Hi Jaybro That sounds like a cry from the heart. Unusual for you because I have noticed how extraordinarily generous you are with your time, encouragement and positivity in your support of others on this forum, particularly the newly-diagnosed. I am sorry that you are still suffering so. I am afraid that I have no real helpful input to offer but I could not pass by without offering commiserations and solidarity.  Sadly, I think you are right about the total lack of connected aftercare. I have certainly seen no evidence of any, connected or otherwise. Perhaps it is all simply down to a lack of funding and resources rather than a failure to appreciate or acknowledge that a holistic follow-up programme should be available for those who have ongoing issues. But with a system that is struggling to even diagnose and treat the disease in a timely fashion, I suppose that aftercare for those ‘lucky’ enough to have completed treatment comes pretty low down in the hierarchy of priorities. For The System one of the absolute priorities is to ensure that all treatment consent forms are signed, sealed and delivered. The list of possible side effects are shot out at us like rapid rifle fire and we duly make our enthusiastic mark on the dotted line, desperate to accept any treatment offered and thereby taking ownership of, and responsibility for, all those miserable side effects that may plague and diminish us further down the line.  We are encouraged to get to know and accept our ‘New Normal’ but when that normality is so far removed from anything that can be remotely construed as usual, typical or everyday, then that can be a pretty tough call. I very much  hope that others who respond to your post are able to offer far more positive and practical contributions, if not solutions.  Take special care of yourself. Pat x     ... View more

“In a real dark night of the soul, it is always three o’clock in the morning...’ F. Scott Fitzgerald writing a hundred years ago. It was ever thus... There’s a book in there somewhere! ‘The Loneliness of 3am.’ Put me down for a copy. Pat x ... View more

Hi again, grannyp Firstly, I hope you have a lovely girly day out with your daughter today and that it works some magic on the anxiety front. You may well find that your ‘secret’ will tumble out spontaneously in the natural course of events but that will be no bad thing. Do what you feel comfortable with at the time. There are no hard and fast rules and we are given no dummy practice run to ensure we get things right, or at least as we had planned them. It must be tricky if your daughter is living with you. My son and daughter both live a hundred miles or so away so the decision was ‘easier.’ As to my own situation, I have just finished active treatment. I was diagnosed in November last year, having found a painful lump just a few weeks after celebrating a clear routine mammogram. Diagnosis was a very tardy process, the unusual presence of pain as an initial symptom and the ‘clear’ mammogram detracting from any sense of urgency. I was tearing my hair out with all the interminable waiting. In the event I was diagnosed with Grade 2 IDC and had a SLNB and full mastectomy for the removal of an 18mm tumour. The lymph node turned out to be positive and I had a full axillary clearance two months later.  I have seen an oncologist only once. On the day that Lockdown was announced. It was the most bizarre of scenarios, an appointment on the Mary Celeste. My benefit from chemo was only moderate so I was steered away from that option in the light of the tsunami of Covid patients they were expecting. (A tsunami that didn’t actually materialise, but hindsight is a wonderful thing, isn’t it?) Consent forms for Radiotherapy and Zoledronic Acid infusions were thrown at me from an appropriate distance along with a life-sentence prescription for Anastrozole. And that was it. After a crazy few months I now find myself trying to remain vigilant whilst putting the whole cancer palaver on the back burner.  The prolonged waiting and the uncertainty were utterly dismal experiences. What followed, by comparison, was a piece of cake. You will get past this awful floundering in No-Man’s-Land. Diagnosis and a treatment plan will ground and anchor you. You will get through this.   I look forward to hearing of your progress.  Pat x ... View more

Hi grannyp You have unfortunately learnt the golden rule of this forum, and any other reputable cancer forum, the hard way. Don’t Google! The wider internet does so love a sensationalist sob story, the sadder the better. Confine your searches to this site, Macmillan, Cancer Research UK. You will find that you will track down any information you are after and within a context that is current, informed and balanced.  The period of limbo and uncertainty that you are going through now is the hardest. Once you have a plan ahead of you everything will fall into place and gather momentum. On the plus side, reading your earlier post, your lump has been picked up by routine screening, it has been dealt with promptly, and you have had speedy biopsies. That’s an awful lot of positives right there! x ... View more

Hello grannyp I can honestly say that I found plucking up the courage to tell my two adult children, both in their thirties, has been the hardest thing about this whole process. And thinking about the prospect of telling them has been the only time I have cried. I decided to keep it to myself until I was 100% certain, reasoning that they didn’t need to be worried unnecessarily if it turned out there was nothing to worry about - however slim that possibility might be. So I didn’t spill the beans until I had my biopsy results, a diagnosis and a way forward. My situation was complicated by the fact that my 14-year-old son, their brother, had died of a very rare and aggressive cancer and I knew that all their thoughts and fears would be heightened and coloured by that experience. I just felt so guilty about rocking their world again. It’s a tough time but I felt so much better when I finally told them. The first big hurdle had already been crossed. I’m sure you will feel that relief too.  On a very positive note, it’s good news that you have had biopsies of both your lump and the suspect lymph node which means that everything can be dealt with during surgery. My positive lymph node was not discovered until my mastectomy so I then had to have further surgery for an axillary node clearance.  Good luck! The waiting is the worst... Pat x ... View more

Hi Elaine Many thanks for that. That’s very encouraging to know. I wonder why we are often so quick to anticipate the worst?!  Pat x ... View more

Hello MM Before being diagnosed with breast cancer last year I had been trying to lower my raised cholesterol level through diet. Those efforts rather went out the window when I had bigger fish to fry. Like you I am a healthy-eating, active non-smoker. Perhaps just a smidgen overweight! When I later realised that Anastrozole itself can cause elevated cholesterol levels I requested a blood test from the GP surgery. The onus for organising this seems to be very much in our court. There is little evidence of any joined-up thinking. I got the results of this today: 6.8 like you. The Nurse Practitioner I spoke to on the phone said this would give me a 10% increase in risk of a cardiac event over 10 years and NICE guidelines recommend I be offered statins. So I have a prescription for 20mg Atorvastatin. It will be interesting to see if I can distinguish the joint pain caused by Anastrozole from the joint pain caused by statins! If it proves to be too grim I’ll ditch the statins rather than the Anastrozole. But I’ll give it a try... Pat x ... View more

Hi Heather Good news about the book. I don’t think you will regret owning a copy. Mine is well-thumbed! I totally sympathise as regards the impact Covid has had, and continues to have, on an already very difficult situation. I too had to wait four months for a dental appointment before I could begin bisphosphonates. And, also like you, I made the reluctant decision to go without chemo because of the implications of Covid. My benefit over 10 years was only 3.3% but pre-pandemic I would have chosen to throw everything at it. I fully understand your regret about your decision. I have had misgivings too, especially since the anticipated threat of Covid did not really materialise in my area. But hindsight is a wonderful thing, isn’t it? A gift possessed by absolutely no-one. We are given just one shot at this and are expected to make decisive choices about treatment options that sometimes have no hard and fast guidelines. There is no dummy run. So I think we have to let ourselves off the hook and hopefully learn to accept and live in peace with our decisions, made with the guidance and information available to us at the time, and move on. Easier said than done, I know, but all our energies are needed for the present and those things that we can change.  Be gentle with yourself and good luck. Pat x   ... View more

And I have almost had a little cry to think that you have had a little cry... Miserable symptoms like that are just a side effect too far after all you have already been through. I had my first bisphosphonate infusion last month and, apart from grotty flu-like symptoms for two or three days, it was absolutely fine. So good luck with that too.  Pat x ... View more

Me again! Just another thought... Liz O’Riordan is co-author of ‘The Complete Guide to Breast Cancer’ which I use as my breast cancer bible. She says: ”If you need more than a lubricant, your oncologist may recommend a vaginal tablet (Vagifem, Ortho-Gynest) or cream (Estrogel, Ovestin). These contain a very low dose of oestrogen which is absorbed locally into the wall of the vagina. Because the amount you absorb is so small, these vaginal oestrogens are safe to use even if your cancer is sensitive to oestrogen.” Page 203 Hope this helps. Pat x ... View more

Earlier this year there was a very frank, informative and helpful Instagram Live collaboration between Breast Cancer Now’s Clinical Nurse Specialist Rachel and Liz O’Riordan, Consultant Breast Surgeon/ Breast Cancer Patient/ Author. It dealt with the side effects of hormone therapy generally and the misery of vaginal dryness specifically. It was aired on 9th July but is still available on the Breast Cancer Now Instagram feed (probably on Facebook too). Someone more technologically savvy than me will hopefully be able to provide a link...  It’s an uncomfortable thing to talk about and even more uncomfortable to have. Hope you get it sorted soon.  Pat x ... View more

Hello Louise The waiting is just interminable, isn’t it? Like you I found it very unsettling to read of others receiving timely and efficient treatment whilst I appeared to be languishing in some no-man’s-land with no sense of urgency in evidence at all. Checking the NICE guidelines I appear to have either missed the target deadlines for treatment, or squeezed in by the skin of my teeth. And my experience is largely pre-Covid... Referred to the Breast Clinic under the 2 week rule in October last year, it was four weeks before I received an ultrasound and biopsy. I then waited an agonising two and a half weeks for a follow-up appointment, biopsy results and diagnosis. A SLB and mastectomy without reconstruction followed 3 weeks later. So, 9 1/2 weeks from referral to any active treatment. That’s 9 1/2 fraught weeks, as I am sure you know only too well. The one sentinel node removed was positive, despite ultrasound suggesting otherwise, and I then waited a further 8 weeks for a full axillary lymph node clearance. I have never received an MRI scan, although I had thought that was standard procedure with lymph node involvement.  I really hope that your treatment gets going soon. You will probably find everything snowballs and gathers momentum once things get going. The Covid situation probably hasn’t helped your situation but try not to worry about the effect of the pandemic on cancer services. You are securely in the system, you have not been forgotten, and your team are being reassuringly thorough. Try and go with the flow and concentrate your energies on things that you can change, rather than stressing about things that are out of your control. Leave the worrying to someone else. Easier said than done, I know, but that’s what I would have told myself last year with the benefit of hindsight. Stay positive and good luck!  Pat x       ... View more

We’re all different. Some of us want to know absolutely everything about our cancer from the very outset. Others prefer to be dripfed more gently as the treatment progresses, on a ‘need to know’ basis. Then there are those who prefer to put themselves completely into the hands of their care team, get their heads down and quietly get on with it without ever needing to know the finer details. We are all unique individuals and we all have individual ways of coping. Whatever path we choose is a legitimate and acceptable one. You may find that you need time to process and get your head around the information you have been given before formulating questions and seeking further clarity. I suspect that your professional oncology experience and knowledge will prove a mixed blessing.  Be comfortable about doing things at your own pace and take all the time you need to absorb the enormity of what can only be seen as a rotten situation. Believe it or not, things do get easier once you have a treatment plan and a clear way forward.  Good luck and take care.  ... View more

I really do feel for you. It is frustrating to say the least. But horrible delays like this cannot all be attributed to Covid. I went to my GP with a lump last October and was referred under the 2 week rule. My appointment was subsequently scheduled for the fourteenth day, the very limit of that promised 2 weeks. The first appointment itself turned out to be a total waste of time, no more than a massaging of figures so that a box could be ticked. The junior doctor confirmed, ‘Yes, you have a lump. I’ll book you a biopsy. You should hear in two weeks.’ Needless to say that appointment was also scheduled for the fourteenth day. It then took 2 1/2 weeks to get the biopsy results and a diagnosis. I could weep when I read of people on these discussions praising the timely and super-efficient service they have received. I am delighted that the system has worked as it should for them but, sadly, it is not like that for all of us. It certainly should be.  I echo what so many on these forums say. The waiting is by far the worse part of this whole process. That period where you are left in limbo, stressed to distraction in no-man’s land, is just the pits.  On this occasion ignorance is not bliss; it is torture.  I really hope that you get your appointment much quicker than you anticipate. In the meantime be kind to yourself and steer clear of Google. Breathe slowly and deeply. Indulge in calming little rituals, favourite activities and special treats to get you through the days. Because you’re worth it. Good luck!  ... View more

Hi Vanda I noticed on the paperwork for my primary bc radiotherapy treatment a few weeks ago that there was a choice of two boxes to be ticked by the radiographer - ‘curative’ or ‘palliative’. It struck me even then as stark. But I would assume that the palliative treatment is intended to indicate symptom control rather than the active possibility of cure of disease. Ultimately the essential difference between Primary and Secondary breast cancer. I wish it were otherwise... x ... View more

Hello May I join your club? I too feel like an eighty-year-old when I wake up! I started taking Anastrozole three months ago and initially felt nothing more uncomfortable than mild nausea for the first few days. I congratulated myself on being one of those lucky ones who experience no significant side effects. Then, wham! At the six weeks mark I woke up with every aching joint creaking and cracking and I’ve not looked back. I walk up the stairs like a toddler, two feet on each tread. I have to stand up from the sitting position in three creaky stages. I walk like Julie Walters in The Two Soups sketch. I feel as though Anastrozole has put me through a mangle. I was fed through one side plump and plentiful, sap still rising... Then spat out on the other side like a desiccated husk.  I have yet to start Zoledronic Acid infusions, delayed because of the pandemic. I reluctantly made a decision to forgo Chemo, again because of the risks posed by the pandemic and only a moderate percentage benefit. So I have no other suspects at which to point the finger for these debilitating and limiting joint and muscle pains. I will tolerate and persevere with the Nasty One because of its undoubted proven benefits. But the next five years promise to be a very difficult love/hate relationship.  I have no clever advice to give but offer sympathy and solidarity in abundance. ... View more