I have just had the results of my first follow up mammogram and the wording was that 'it showed nothing worrying' and that I would be seen as previously arranged. My follow up with Oncologist is today and I will be telling them that since that letter I have worried!!!
I rather expected to see the words 'No Evidence of Disease' as that seems the norm when all is well.
I am looking forward to todays meeting as it is the first since I went last Sept and told the Oncologist just how awful I felt and that my blood results showed 'deranged'. Her view was it was nothing at all to worry about and to relax about it all. She changed me from Anastrazole to Exemestance. Two weeks later I was diagnosed with Bowel Cancer......
Today I am going to advocate stopping Exemestane as it makes me feel unbelievably out of sorts and I dont really consider an extra 1% chance of still being here in 4 years as a good enough risk to spoil what time we do have. I hope that I have addressed other risk factors in my life and changed my whole diet, lost nearly 3 stone this year, vastly reduced drinking and am training to row in the London Great River Race.....pah to the pills!!!
What a daft thing to write in a letter......as it has now made you uncertain. I can understand your doubts, as this is such a vague statement. I'd ring and ask for clarification also; were they being charged for each word by the typist? A few more would have helped to make things less confusing.
What an incredibly rubbish way of communicating with any patient regardless of what they mean!! I would certainly be phoning them up & asking for clarification. Please let us know how you get on. It may mean because of scar tissue it's not 100% like it was pre surgery, but looks ok. I would also tell them that is not a satisfactory thing to put in a patient letter even if that's how they discuss it between themselves, xx
Hi all....my first time here! Had my mammogram on March 1st after a lumpectomy late April 2015, six chemo sessions and 15 radiotherapy sessions. The mammogram result said the result was 'being treated as normal'. Is this a sort of covering their backs ok, or a proper ok.....if you see what I mean!
Hello all, I'm in the paddock, hurtling round eating all the grass, bit ears waving. Got my letter this morning - took 3 weeks and you're right Bibi - there's nothing like having that letter in my hot sticky little hoof! I have 'no new abnormalities identified' - although my husband has made a point that I have plenty of old abnormalities. Cheek! Am so excited. Butterfly - hope you're in the paddock too. Big hugs all round. Christine xxx
Hi, sorry to crash in on your thread but I had a similar route through BC to you in 2013. Lumpectomy, 6 FEC, 15 rads and 18 Herceptin all finished Feb 2015. My first mammogram was 1 year after surgery organised by the breast clinic. I was still tender physically and emotionally and found waiting for the results agony! I still have bloating that I acquired during Herceptin but my onc says it's nothing to worry about, apart from that and dry skin I'm back on track. Hope all goes well for you, hugs to everybody on the journey.
Thanks Cesrabbit & Jobey. I'm planning to take 2 cocodamol an hour before like I did with the cold cap. Barely felt a thing when the latter went on, so hoping has the same effect for mammo. Good luck for yours Ces xx
Hiya, My boob is still a bit tender but the lady doing mammogram was lovely and rushed around to get the pictures as quick as she could and take the pressure off! It really wasn't painful though 😊
I had the two op surgical experience, hence the delay between anniversary of diagnosis in June & of surgery in August. I was a bit flummoxed by having a choice actually, thinking they should tell me rather than the other way round. x
I didn't get to choose when I had it, was told when I got my results after surgery last April that it would be annual from that date so expected it by April this year which is was, think it's generally a year from diagnosis ish!! A friend of mine who finished chemo/ rads in Nov had hers just before me in March a year from diagnosis too xx
Well done to all who got clear results, must be a HUGE relief for you & can't wait until I have that letter in my clammy little hands. I think that confirmation there is nothing there will feel like the end of treatment to me.
Question: when are you supposed to have the first mammo? I am coming up to a year from diagnosis (2 WLEs, 7 rounds FEC-T, 15 rads & 12 months of Herceptin (latter ongoing & finishes in Oct) & 10 years of Tamox. I asked Onc when is first mammo & she said 'whenever you want/feel ready'. Although smallish tumour/stage 1/no nodes, I was told repeatedly that I have high risk of recurrence 😩 as grade 3, high ki67 & HER2+. Not sure whether to go for June anniversary of diagnosis, Aug anniversary of last surgery, Jan anniversary of last chemo or next March 6 months post last Herceptin. Bad boob not really too painful post rads, although get the odd stabbing pain. Any thoughts gratefully received. xx
That was my thought too butterfly! Mine came 8 days after I had Mammogram but was told to expect within a fortnight, it's bad to make you wait so long although I'm sure if there was a problem you were certainly know by now! Xx
Yes i am sadly. Had the Mammogram they day before Good Friday. So three weeks today, i know we had a long weekend. I may chase it next week if i don't hear. I suppose i'm thinking 'No news is good News'...
I'll post as soon as i hear. Butterfly x
Hooray Pablo, fantastic news, are you now in the paddock eating all the grass? Save some for us - we'll be along soon. Christine xxx
Well, I got the all clear today. The biopsey showed just scar tissue. It is the result I was expecting but it is good to have it confirmed. Best of luck to everyone still waiting for results.
That's the spirit Christine! I didn't find mine too bad at all but like you the lovely lady was rushing about trying to get it over with as fast as possible for me! My hubby keeps asking if I'm ok, I think he's a bit freaked out by my calmness compared to how I was a year ago! Xx
Good to hear you slept a bit better, I've been up early cleaning windows! My day off today so it's always busy playing catch up at home, hopefully we will both hear something today 😊 Xx
Thats good news, I am always happy when somebody gets NED because we know how that feels. I slept a bit better last night but up early, ironing done and i am just going to go swimming.
Have a good day. Butterfly x
I had a good check up to and all was well so I'm im not being a pessimist just trying to keep in mind the possibility, you've had a long wait! They told me 1-2 weeks but I've spoken to people who had theirs back within a few days, a friend of mine has had hers today after 13 days, all good I'm happy to say 😊 Xx
Jo So sorry you're planning the worst, and you are so right, worry does absolutely nothing. I do mindfulness and other distraction techniques but last night was just rubbish.... had mine done March 24 usually takes about two weeks. To be fair my Hubbie has had longer to learn what to say and what not to..... Ive been on a very long walk today to wear myself out. My Sons dog runs in the kitchen when i call to pick him up.
Take Care Butterfly x
Hello Butterfly and all, Yes, now awaiting my letter too. Mammogram on Weds was the pits and the most excruciating pain on one particular picture - nurse was so kind and actually ran to machine so it would be as quick as poss! Wish I too had the what will be attitude - nearly clocked my husband this morning when he said 'think about both scenarios and how you will deal with the worst/best' NOOO, don't want to do that, but do keep thinking about worst, and not sleeping. On a more positive note, the seroma drained on Mon has made an enormous difference and now have a soft boob, hoorah. Right, now going to be positive and get my donkey ears ready to join the other NEDdies in the paddock. Good luck to us all. Christine xxx
Dear Rubycat & Pablo
Sending hugs and hoping for positive results for all of us.. I am waiting for my letter following Mammogram. Sadly i don't have a what will be will be attitude (wish i could adopt that approach) so have spent yet another night awake most of the night.
Take Care Butterfly x
I had my first year check up today, Mammogram wasn't painful and had a good physical check up, won't get results for a week or so but not stressing about it as what will be will Xx
Just sending you a hug. Yes, horrid how deja vu gets you - I've just had to have my seroma drained today as have my first year mammo on Weds & seroma was rock solid, but got myself into a right pickle walking into the hospital with blood pressure sky high. Still, all over now & just mammo to get through. Wishing you good everythings. Christine
I had my 1 year mammogram on Thursday. They said the scar has changed a lot in the last year which is normal, but just to be sure I had to have an ultrasound and a biopsey, the doctor took 3 samples. My surgeon and the biopsey doctor both said they are 99% sure they will find nothing and I believe them but there is a voice in the back of my mind keeping me very unsettled until I get the results next week.
It all came flooding back during the biopsey, all the horror of multiple surgerys, chemo and radio therapy. Hopefully that will to be nothing more than deja vous.
I know you are in the States and interesting that you feel we have more advanced treatment. I feel we have consistant treatment, generally this results from NICE Guideline recommendations based on years of research. Whilst we are ultimately able to make decisions on whether we have treatment or not and what that treament may involve, we are given guidelines and information.
I live near Manchester, much of the ground breaking stuff in all areas of cancer treatment, not just Breast Cancer, came out of the Christie Hospital, Manchester, such as Tamoxifen. There is a huge research facility offering TILS (where Chemo is tailored to individual mutated cancer cells at a cost of between £30000 and £100000 per person so this can not be offered to everybody. This is generally offered where secondaries are in a contained area rather than in multiple places and is usually in Management rather than cure)......... There is ongoing building with new resources all the time. I know London has these places in abundance... I am grateful for the NHS. I have relatives in South Africa and Greece so am aware that treatment is very different in other parts of the world. I do acknowledge also from this Forum that some of the ladies on here have received inadequate care.
My treatment didn't go as planned, i had Chemo first, surgery x 3 culminating in a Mastectomy. I have since had reconstruction which is suffering Capsular Contraction and i need to have further reconstruction using a different method.
Generally in the UK (there are always exceptions) 15 radiotherapy is standard, if cells found in Axila or if tumour is near chest wall, 5 boosts to that area or axilary node clearance (always on an individual basis). Some units use 20 as standard. Some ladies on the site have said no to Chemo based on research, advise and patholgy reports to prevent over treatment.
With reference to Mammogram. In the UK this is again different in different units. My original diagnosis was in October 2012 followed by immediate Chemo then surgery so my first mammogram was 12 months from the 3rd surgery but interestingly my GP thought it should have been in the October which was only 6 months from surgery. I am 3.1/2 years on from original diagnosis and just had my 3 year check up and Mammogram, nothing visual to be concerned about, just waiting for Mammogram results.
It feels like you have to make many more independant decisions (on a subject that you don't have prior knowledge) in the Healthcare system in the States. There is a thread on this site where Privately treated patients in the UK also don't appear to have follow up support / the joined up service that an NHS pathway offers. I am not seeing the service through rose tinted glasses, i know that it isn't perfect.
I do hope your Care Team / Physician can be supportive of your choices and requests in care and that you remain well.
Take Care Butterfly x
Fantastic news. Always a relief when you don't have to go back for a while.
Take Care Butterfly x
I had lumpectomy and mammoplasty last April followed by 15 RT sessions and went for my first mammogram earlier this month. I was very anxious because of having surgery both sides but followed advice in other threads of the forum and took paracetamol about an hour before my appointment. I also made it very clear as soon as I got in the room that it was my first mammogram post surgery and to be gentle with me! They set the machine at the lowest pressure (didn't know they could do that). Also there was no sitting around in gowns, just removing top half once in the room. It wasn't as bad I had anticipated - in fact some pre-BC mammograms had proved more uncomfortable. With regards getting the dreaded letter, I was rather concerned when it arrived so quickly - within 5 days - but fantastic news that it was clear! Good luck everyone having their one-year mammograms!!
Had a lumpectomy last June, so am due first mammogram this June. Dreading it as I am still very sore and tender and also very lumpy along the scar line. Mentioned it to oncologist, but he seemed to think I will be fine in a few months. I am not so sure. Jan x
I live in the United States. I have finnished radiation 35 treatments ,in last December. My radiation doctor tried to schedule me for a mammorgram in March! Thats only three months! I said NO! I will do it in October. The scheduler on the phone was shock. She said "but your doctor ordered this" . I said well " I am my best advocate. This is too much radiation. I was only stage one. Had lumpectomy ,radiation and taking Letrozole . No chemo as my onco scrore wqs only a 20. This too was my choice. I sometimes wish I lived in the UK ,seems more advanced medicne . GEEZ!
GOOD NEWS!!!!!! I had my mammograms just over a week ago (1 year check up) and I had a letter today to say that it was "ALL CLEAR" no cancer detected at all. I am so HAPPY!!!!! Now for a celebration, going out to get that all important bottle of wine.....lots of love chris xxxxxxxxx
Hi, Just had my 1st mammogram (its nearly 1 year to the day of my lumpectomy). It did hurt a bit but not much. Now for the waiting bit........I did ask if I could have the results sooner but she said if anything is wrong they would send letter within one week, but normally it will be 3/4 weeks. Very helpful (not).....dont like waiting for results......x
Guess what, I got all clear too, yipeeeeeeeeeeeeee
thanks for your post, it was just as you said and I got my results in clinic an hour later - very impressive and they were all so lovely, I owe them a huge box of chocolates - ooops, i've eaten them already, ha ha! I did have to have 2 cysts aspirated as well but they did those before the mammogram otherwise it would have been a lot more painful, ouch!
Thanks to everyone posting, will dip in and out from time to time, I do feel a bit strange, like I should be cock-a-hoop but i'm not?!
Anyone else feel the same or is just me expecting too much?
Thank you so much for your post with your experience, very positive and is very similar to mine.
Hospital 9.30 a.m., and can't sleep so thought I would check the forums and was so pleased to read your post. So good to hear it went well for you and I hope tomorrow will be okay for me too. Weirdly it is a year tomorrow that I was in the same room having the mammogram for the wire to be inserted before the first lumpectomy so I think it will be a bit unsettling but they are all so nice, it is the pain I am more worried about. My GP recommended Voltarol an hour before my appointment so I hope that helps. Ultrasound afterwards as I have cysts to be aspirated and then they have arranged for me to see one of the Consultants an hour afterwards, not sure if it's for results or general chat, but will see what they have to say. I have learnt to take things as they come.
I am so pleased to have read your post and feel more positive.
Do you mind me asking - are you on tamoxifen? It hasn't been mentioned to me.
Many thanks again
hello lorraine... i had my first mammo on the 9th june, i also had 2 lumpectomys and 17 rads. well firstly .. dont worry ... my boob was also still painfull and achey. but the mammo was ok ... not nearly as bad as i thought it would be ,, uncomfortable but not painfull. it was the sight of the machines that made my stomach turn over , brings it all flooding back .. i was weepy when it was over, but i was quickly reminded that the machine i feared so much actually saved my life..so try not to worry.. easy said i know.. it really is not so bad ... and i got my results last week ... im all clear just a lot of scar tissue but nothing else ..so good luck and dont worry it really is ok angie xx
my clinic was running 6 weeks late when I had the first one post treatment. As I was diagnosed in October, it coincides with breast cancer month as they are seeing all the ladies who were picked up via the screening programme. I was so concerned I rang my breast care nurse and she told me when this happens the surgeons and oncologists went through all the mammo patients at the weekly meeting they have. She said any patients they thought may have problems were given priority and I wasn't one of them. It made me feel a bit reassured.