Breast Cancer Care Forum

Hi RedRose   Its a long time since I’ve checked the chemo threads but just wondering how everyone is getting on.  So sorry to hear the new of your mother in law.  What a shock! As you say she wanted you to be married so it’s good you are going ahead with the Wedding but obviously it will be so sad she’s not there.  Are you thinking of incorporating her memory in any way?     I can hardly believe that you won’t get IVF because your partner already has children.  However well you get on and love your step-children I can understand you wanting your own child with your OH.  What insensitive timing too when you are having to deal with the cancer anniversary and making decisions about further surgery,  I’m sending a massive hug and thinking of you.  Clare  ... View more

Sending hugs and keeping everything crossed for you that all is clear Janie xx ... View more

Phew! So pleased that you’ve got the results in black and white.  C xx ... View more

That’s brilliant news Kip! Xx ... View more

That is fantastic news! Fingers crossed for you too Kip xx ... View more

Oh Kip   So sorry you’ve had such a difficult day especially after psyching yourself up for the results.  I do hope you get them soon. I’m glad the nurse was understanding but it must be so hard when you just want reassurance that everything is ok.  How are you feeling this evening? A bit brighter I hope.  Did you manage to keep averting your eyes from the chocs?  Any attempts at self-restraint have gone out of the window on my part! However,  I did manage to offload a whole tub full of Easter eggs at the Memory Cafe where I volunteer this morning.  Still have two shelves full of them in the fridge though!    I’m interested to hear that your diagnosis stated dense tissue yet the lady you saw previously thought it was something you only heard about in the US!  I was offered tamoxifen as a chemoprevention in 2017.  I knew nothing about dense breast tissue possibly masking tumours or that it could reduce breast density then.  I was reluctant to take it as my GP had never heard of it being used in a preventative measure,  I now know studies show it reduces density so alongside preventing recurrence in ER+ BC I suppose that’s another positive but I’m also struggling with the side effects of the Tamoxifen. 😪    It’s interesting to hear what you’ve been told re checking the MX side.  I’ve been told I will just know as it will be obvious!  I really don’t find that helpful at all.  Not heard about the purple pustules that aren’t pustules??? I will obviously be keeping a close look out for any changes.  I’m pleased to say that with massaging the fat necrosis on my left side has lessened.  It was freaking me out as it felt like the original tumour so I’m relieved not to have that reminder.       ... View more

Thanks Michelle   That's really helpful.  Going to order one now!   Clare X ... View more

I do so hope you get your results very soon and all is well.  It's a stressful time so the worries are understandable but hope you've been able to put them to the back of your mind whilst enjoying the sunshine.  My knees have been aching badly but I think it's down to Tamoxifen and age. Interesting to hear that wheat may be an issue.  Let us know what they say tomorrow Kip.  My main side effects from the hormone therapy are hot flushes and night sweats.  My research consultant suggested getting a 'chill'ow. Anyone tried one?  She also said to cut out chocolate and coffee - I don't drink the latter and I'm feeling sick of chocolate as I've had so much over the Easter weekend so maybe I'll take a break from it over the next month or so and see if it has any effects!!  Hopefully if I lose some weight my joint pain will lesson.  I've had two sessions of accupuncture as it's the first thing that they try at the Marsden for hormone therapy issues.  As yet it doesn't really seem to be helping but I'm willing to keep going with it.   I have another 4 sessions to go and if I see an improvement I will be shown how to 'self- needle'!     Take Care everyone and hope you've had a lovely Easter bank holiday   Clare X   ... View more

If it’s any consolation my eyelashes have grown back longer and eyebrows are now in urgent need of threading! My hair has grown back curly and I’ve had more compliments since finishing chemo than I’ve ever had in my life because everyone says my hair looks good short!    ... View more

It took around four months before I felt I didn’t look like someone who’d been having treatment. Kip I’m astounded by your radiologist’s lack of knowledge!  Dense tissue is referenced in the guidelines on imaging from NICE and Publid Health England so it’s just not true to say it’s something that is only some in  the US.  I could get Cheryl Cruwys from Breast Density Matters to send the hospital some information with the links to the latest scientific research into increased risks of BC in those with dense tissue and best ways of imaging if your happy to to share your recent experience.   Clare x ... View more

Hoping this might be helpful to some of you. Xx ... View more

Hi everyone I can only speak for myself and I know many of you will know my story already,  but for those that don’t, I had bilateral breast cancer, both Grade 2 IDC tumours which were 2.5 cm in total on the left and over 5.2cm on the right.  I only had micromets in the sentinel node on the right and this is not classed as lymph node involvement.   My original hospital told me nothing was visible on the mammogram and follow up ultrasound I’d had 9 months before I found an area of thickening in my breast tissue.  I now know I have category C/D (very/extremely) dense breast tissue and the hospital told me I am amomgst the ‘unlicky 10% whose are mammogrpahically occult.’  (Their words exactly)  They also told me that the grading of tumours isn’t always the only indicator for growth rate and maybe the tumours had grown in the nine months between screening .  They also said maybe the tumours had been there for much longer but were masked on mammogram by the dense tissue.   I am waiting to see if the Parliamentary Ombudsman will accept my request to have all imaging reviewed by and independent panel but even they may not be able to tell me how long the tumours took to grow.   I was told that even though the surgeon removed the tumour completely on the left during my breast preserving surgery, it might be better to have the left breast removed as they didn’t know how they would screen me in the future.  I had to have the right one removed because more cancer cells were discovered below he nipple despite a re-excision. Ultimately, I felt happier having both breasts removed.  I had my op at a different hospital and when the pathology results came back it showed I’d still had cancer cells in both breasts despite my previous surgeries and six months of chemo so I’m very relieved I opted for a double mastectomy.  As I no longer have any breast tissue the view is there is no need to scan either by mammogram, ultrasound or MRI  but I am planning on continuing with yearly private ultrasounds (I have a five percent chance of breast cancer returning in the skin as I had skin sparing mastectomies) for peace of mind.   If I’d had a lumpectomy I would absolutely insist on yearly ultrasounds at least as part of my follow ups.   .               ... View more

There is a great closed group on Facebook called DIEP reconstruction UK.  I find the support and the  shared experiences and photos invaluable.  I’m also happy to answer any questions you may have, I had my Double Mastectomy with immediate DIEP at The Royal Marsden in January and I’m delighted with the results.  Yes it’s a long op and recovery but, in my view, so worth it! best wishes Clare xx ... View more

Forgot to say that the hospital provide transport(a taxi service) which takes patients to and from their appointments!!!  ... View more

If you are in category C or D then the dense tissue - which shows up as white,  could mask a tumour which also shows up as white on a mammogram.  You may need additional screening if the tissue is either C or D as in my case.  Ultrasound should pick up and problems but MRI was the best screening for me.  Hope that’s helpful to those of you having your mammograms soon.     I have no hope of losing weight at the moment as my family and I have been staying with friends in Germany and the food is delicious!! Interestingly, and sadly my friend was diagnosed with BC a few months after me.  Thankfully due to dense tissue she was given a follow up ultrasound six months after her initial mammogram and ultrasound as she has dense tissue and her tumour is quite small though aggressive.  She’s having neo-adjuvant chemo. and a lumpectomy.  Today she told me that as part of her recovery she is entitled to three weeks stay at a health retreat after she finishes active treatment.  What a great idea!!!!  ... View more

I need to go on your diet Jean! I think I’m addicted to chocolate!! Great you’ve still managed to lose weight even though you’ve been eating some! Good to hear you’re hooping again.  I just can’t do it! Just don’t seem to be able to coordinate waist and hips!!   Kip Obviously a tough time waiting for mammogram/results.  I hope all goes well on the 11th.  The radiologist thinks that I have internal scarring and stitching as she couldn’t see anything that worried her on ultra-sound.  I have to keep an eye on the area and if it changes (more modular) I’ll need to go back for an MRI and biopsies.  She was pretty confident all is ok and surgery related but I’ll ceryainly be very cautious.   i am on the endocrine only arm of the Monarch E trial- relieved in a way as I wasn’t looking forward to the chronic diaohrrea that over 90% of those on the additional drug experience.  I will be monitored just as carefully which can’t be a bad thing.   Just waiting to see the acupuncture specialist at the Marsden.  Just having the most horrible hot flush so hoping she’ll help with that as well as my neuropathy.     Really need to dig out my fan so bye for now! Xx   ... View more

Hi Everyone and sorry for the delay in posting    Had a hectic couple of weeks but mainly positive things such as visiting my sister in Reading and doing a glass fusing workshop together and heading to Surrey for a family get together.  Also hospital appointments coming out of my earS - check up with Plastic Surgeon, seeing the research consultant, I should star Monarch E trial on Wednesday if bloods come back Ok.  I really feel comfortable at the Royal Marsden now.  Everyone is so lovely.  My surgeon gave me a huge hug when I told him I’m struggling a bit emotionally.  I also have a hardened area on the left whichhe is sure is the edge of the flap or fat necrosis but he’s ordered an ultrasound just to reassure me as the area is in the same position as the original tumour and was freaking me out. I’m just writing this in a cafe as they’ve rearranged today’s appointment for an hour later.    Jean you’re right about the psychological side of things being hard I’m also getting more active and even joined a yoga class at Maggie’s.  It was great but it was exhausting as it’s the first time I’ve really stretched my body since my op in Jan.     Sounds like you’re trying hard with your diet Kip.  I’ve given up!! Too any chocolates given to me for mother’s day and I just didn’t have the will power at the moment.  I’m trying to up my vegetable and fruit intake in the hipe it will somehow counteract the chocolate bars and cake! I’m so impressed with the hooping.  I’m hopeless.   I know what you mean about the last year being surreal Michelle.  I realise I’ve sort of blocked or lit because whenever someone asks me about the last year my default is to go back to 2017 thinking I’m talking about 2018- such as Des robing a great holiday last year and realising it  must have been the year before!!   Linda Lovely  to hear you got away to Egypt and about the new car,  I’m off to visit my lovely friend in Germany on Saturday.  She’s currently going through chemo but insists that my family and I stay with her.   sadly my cousin’s diagnosis was confirmed and she’ll have amastectomy with immediate implant reconstruction at the end of April. She’s sounding pretty upbeat and I’m hoping I can support her.   Take Care xxx         ... View more

My previous hospital was also disjointed in terms of having to go to one floor for the mammogram, another for appointments and results etc... I’d have a follow up two weeks later and a physical exam. I’m not sure how the Marsden organise things.  I’m glad all went smoothly for you Jean and your mammogram was clear.  Phew!     I’m not ready for the Hope course or Moving on yet but I will be going back to my local Maggie’s Centre for yoga.  They’re holding a Kitchen Table Fundraiser next week so I’m going to bite the bullet and go- I’ve been holding back as it’s in the grounds of the hospital where I have my ongoing complaint.     Ive had an amazing day with my OH down in Southsea, so fantastic to be by the sea.  We went to view some properties and fell in love with one.  We’ve realised we can’t afford a suitable house in London so we’ll hang on to the flat here but have the lovely house we can live in down South for holidays and weekends when we can.   In the long run we’d hope to retire there.  We had our offer accepted and as we were signing some forms for the estate agents I realised it’s exactly a year since I felt the area of thickening above my right breast.  I hope I’ll be able to remember this day for all the good reasons now and not the absolute terror of just knowing something was seriously amiss.   We were only able to view the property today because one of the prospective viewers pulled out at the last minute.  As soon as we walked through the door we knew we’d found somewhere special- most amazingly my husband spotted a wedding invitation showing a beautiful building, pinned to the fridge.  We thought it looked familiar and were astonished to realise it’s the venue we’ve booked for our celebration/thank you party in the Summer.  Such a coincidence.   On a worrying note I had a call from my Mum to say my cousin’s sister is having an MRI scan a week on Friday following a recent mammogram/u/s.  She’s had to fight to even get screening at all as she was told she wasnt eligible for any despite both her Mum and sister being diagnosed!  She’s now had further tests and been told she also has very dense tissue and it looks like she may also have breast cancer.  Obviously we’re all hoping it will show she’s ok but I don’t think she’d be having an MRI if her medical team weren’t very concerned. It makes me all the more determined to fight for an Inform Law to make it mandatory to tell women about their breast density and the implications if they are found to have very dense tissue.  I recently found out the NICE guidelines for women on the High Risk Familial screening Pathway were updated in 2013 and states that if a woman has dense tissue she should be told and have it in writing that mammograms may not be as effective as they can mask tumours and they may wish to consider alternative scans.  I don’t know a single person who has been informed of this at their screening!!    I’m feeling rather tired after a long day so heading off to bed.   Hope everyone enjoys the rest of the weekend xxx                   ... View more

Such fabulous photos Michelle!  You did so well today.  Congratulations. Lovely to see the sun came out for you too xxx ... View more