mel
mine was invasive too,
my 2nd question to onc is going to be - how are you going to moniter for it coming back.
lets hope i’m made of the same stuff as my aunty shirl, over 20 years and no signs of returning, and that was a while ago when they werent as advanced as they are now.
what a draining morning!!!
angie xx
yep the future is much more positive than it was then. Remember, for MOST people it doesn’t ever come back- I suppose we just have to learn to live with the worry! I imagine as the years go on you worry less and less…
Hello Angels
Paclitaxol Cycle 2, Day 7
Sorry I haven’t been in touch for a few days but we went to a family BBQ on Saturday, stayed at my parents saturday night and came home Sunday night…yesterday I slept and did a bit of gardening but last night I was shattered! Think I should have done nothing but sleep yesterday but as I felt fine I carried on…
Today I feel drained but better than last night so I’m taking my own advice and doing nothing!
I’ve been reading all your posts and see that you have the same questions I had earlier in the process, I already asked how they monitor/check etc and was told they can’t because the cells don’t show until they become a small tumour so I’m ‘clear’ and will remain that way until I report with anything odd in future. Angie - my chemo and rads is preventative/belts & braces as I was declared ‘clear’ after surgery…luckily I didn’t have any lymph node involvement but did have some ‘rogue’ cells floating around in the area of the first lymph node. The ONC said any scans would not show anything as individual cells are too small but the chemo will wipe them out.
Pauline - I had gunky eyes each day as well as watering during the day a couple of cycles ago and was told its ‘dry eyes’ (didn’t seem logical but I went with it) and was told by both chemo unit and optician to use ‘comfort drops’ which I did for a week or so and it cleared up.
I haven’t seen my ONC since 9th May - I booked an appt for this Thursday last week and apparently he then asked to see me soon as he was worried he hasn’t seen me! As I’ve been okay I wasn’t worried about not seeing him but now I want to get my plan for Rads & Tamoxifen sorted so I can start looking at a going back to work date, plus a short holiday if we get the dates right! My big question for him is how long for Tamoxifen as he metioned 10 years previously, has anyone else had 10 years mentioned or just 5?
Two good things from the weekend…seeing my 19 year old nephew changing into a man, he’s in Royal Marine training and the 10 weeks he’s been there so far have made him grow up and it was really lovely to see. My 14 year old niece thinking my hair looks lovely - yes it was my wig! 
Hope you all feel okay and the SE’s are becoming more manageable.
Kate
x
It was not Dr B, I typed her name but it was deleted Dr F. She said scans increase risk of cancer returning as they are radiation. Also scans only show cancer and not cancer cells. X
Has anybody looked into the causes of cancer? I’m reading a book by Chris Woollam called ‘Everything you need to know to help you beat cancer’. He explains very clearly how cancer works within the body, along with lots of useful information about how to reset your body back to the stage where it can fight it. This includes changes to your diet and lifestyle. I’ve found it very informative and helpful. He’s the guy who runs the 'cancer active’website. Some of the changes seem pretty impossible to achieve, but Ifigure if I can make some simple changes e.g. to my diet I can give myself a better chance long term. To me its that feeling of taking control again. XX
welcome back kate,
glad you’ve had a nice weekend. i was told 5 years of tamoxifen, not heard of 10 before.
angie xx
Fec-T cycle 5 Tax 2
That’s another box ticked, all went well this morning. Been out or lunch as a post chemo treat. Have been reading all your posts re scans etc, its crazy how we get told different things. I had 3/22 nodes positive and the cancer had started to spread outwith one of the nodes. My consultant said he got the clearance he required and chemo and rads would be belt and braces for me. Rads will be 19 sessions due to grade 3 and node positive, followed by 5yrs of Arimidex. I will also get a Ct scan and bone scan.
I think for a lot of us now we need something positive to hang on too, we have a lot more knowledge now thanks to this forum and need to arm ourselves with questions for our Oncolgists in order to give us peace of mind as much as we can. I see my Oncologist every second cycle with a phone appointment in between.
Kate, good you had a nice break its nice to get away for a while.
Hope you all have a good day xx
Forgot to say I was also told that the Radiotheraphy can increase chances of Lymphedema x
TCH cycle 5 of 6. Day 1
Number 5 done and dusted, no problems and feeling good right now.
Re, scans. I asked my chief onc this morning about scans after chemo. He said absolutely not unless they decide a scan would be more beneficial than the risk of another cancer developing (not necessarily another breast cancer) He said scans can cause cancer and of this there is little doubt. So unless there is definite evidence that the bc might have spread already, they will not do a scan. In my case he said he could say I am already cured but isn’t ethically allowed to say that, but gave me a nod and a wink. He said a scan would do more harm than good. He said it is down to me to keep an eye on my body, and should I present with possible symptoms of spread, they would then look into it. I will get the 12 monthly mammograms for 5 years to keep an eye on any breast recurrence. So all I can do is trust him.
My onc went through the radiotherapy proceedure with me and discussed the possible side effects, which don’t seem too horrendous other than the possibility of cracked ribs and the lower part of my right lung being hit, which apparently doesn’t affect the lung function at all. However, should I ever have to have a chest X Ray for whatever reason for the rest of my life, the X Ray will always show a shadow in that area. So I have to tell them about the radio to stop them (and me) panicking!
I only need 3 weeks on the whole of my lumpectomy breast, and no underarm treatment as I was clear. I will have my planning meeting after my last chemo, then I go on holiday for a week, then my Rads will start when I get back, so I will have at least 6 weeks between last chemo and first Rads. He wasn’t at all concerned that I asked to delay due to my holiday.
Hey ho. Love and hugs to you all, Linda xxx
Hi Mel,
i am on my 2 weeks off treatment now and begining to feel better again. I have to be honest and say CMF is not easy I believe this is because I am taking a tablet three times a day for the 2 weeks. The regime is difficult to comprehend at first because you have the injections on day 1 and day 8. I have felt very tired on this treatment and next month I will have to return to work on a grounded placement partime, as the airline pays for 6 months. I can’t survive on SSP so I will have to grin and bear it.
i have had a sore mouth too!!
Now the plus points, my hair is starting to grow back and eyelashes and brows slowly coming back. The time spent at the chemotherapy unit is much shorter than when I had the red stuff too. So there are some positive factors to consider too.
Today, I had wiggy trimmed because I did not like the style really. I saw a great stylist who makes wigs although to expensive for me. He said there was too much hair in my wig and because he styled it on my head I feel lIke it suits me, also he cut those awful tabs out which where itching. I will post a photo shortly.
I love reading all your posts angels.
Debra. xx
Debra I’m so glad you’re feeling a bit better. How long have you got left of your treatment? It’s so good that you are starting to see some positives too. Being more comfortable with your wig will really help you to feel a bit more confident going out. Also the fact that your hair is coming back is a great plus. I’m sorry you have to go back to work early. That will be hard when you are so tired. You may find the company and work a welcome distraction though. It’s so easy to focus too much on the cancer when you’re stuck at home on your own. My husband took me to the pictures this morning and it was such a welcome distraction. Take care xx
Hi Mel A,
I have 3 cycles of CMF left. the corners of my mouth are sore, blisteze used to help. Is any one taking vitamin supplements
and are they helping?
Debra. xx
Hi Angels,
Interesting to read all your posts/conversations about recurrence, scans, no. of rad treatments and tamoxifen. Also interested to read about the differences in contact points with chemo unit - I have an appt with my onc (or registrar) before cycles 2,4,6 but no other follow-up, nurse contact unless I have a problem or a blood test. I guess that there are a number of factors which roughly shape our individual treatment plans - tumour size, grade, lynph involvement, LVI, age, and to me the important thing is to feel I understand why I am getting what I am getting and don’t feel I am missing out. I also asked about prognosis at my last appointment since the focus had always been around treatment rather than the future - the doc used the computer program to look at % chance of living BC free in 10 years - can see how this goes up as chemo/rads added into the picture. Reassuring that the only measure is 10 year range anyway!
Rads is another area of variation - so far have heard I will have 5 weeks, but a bit further off than some of you so will see if this is the case…
Tamoxifen - understand anyone who goes through menopause whilst on tamoxifen would then get a different drug, so may be just uncommon to have someone on tamoxifen for 10 yrs.
Seem to be totally washed out by the injections this cycle, so thank goodness for the tennis
Carol xx
Hi Carol
I’m being put on Tamoxifen to block the oestrogen receptors and put me through early menopause. I was told that I will be on it for 5 years, but very recent research has suggested that a 10 year term has shown increased benefits so things may be changing in that area. As you say though once you go through menopause I think they put you on an alternative drug. My concern about the Tamoxifen is that there is a risk of womb cancer after 5 years of taking it - devil and the deep blue sea!
Debra - you are definitely getting near the end! Vitamin D is the best vitamin to take for your immune system, which you can obviously get from the sunshine, but which we are sadly lacking in this country. Check with your medical team before taking anything though.
Mel xx
Interesting about Vitamin D and sunshine.
I was reading an American site a while ago that was discussing this. Over there they get far more sunshine than we do, and are much more vigilant about sun block as opposed to sun creams. Using high factor and sunblocks (as we chemo people are told to do) is causing many people to get a Vit D deficiency, so they are advising people to get about 10 to 15 minutes of sunshine daily without any creams to try to counteract this. On the odd days we have sun I have been trying this. No idea if it is working of course, but I haven’t burnt, gone red, or felt poorly. I did wear a hat to protect my bare scalp though.
Linda xxx
Good morning Angels,
I have been reading your post for the last 5 days, unfortunately every time I posted they disappeared into cyber space. Glad everyone is turning a corner in treatment. Although the GMCF injections have been really horrible, this time in 4 weeks our chemo will be finished… Whoopee.
On follow up subject, as Triple negative , affective ly after my radiotherapy finishes, that’s it apart from the yearly check with breast surgeon and mammogram. My onc has told me what to look out for and to call her secretary if I am worried about anything which is really reassuring. With the rads I am hopefully going on the IMPORT HIGH trial. Any of you still to see your rads consultant should ask if its available at your hospital. This is all to do with the targeted rads, but you get yearly scans, and full check up.
As for the dripping nose and eyes,I have had these almost from day one of chemo. The dripping nose is because we lose all the hair up the nose, I often wear sunglasses now during the day as it reduces my watering eyes quite a bit.
onwards and upwards Angels xx
Hello ladies,
Popping in from the “June Jewels” re the scans discussion. I hope you dont mind me sticking my relatively in-experienced oar in. I’m 45 and was dx out of the blue late April, had a Mx & ANC in May with 5/12 nodes affected. Im having 6x FEC-T, (1 done) plus rads, herceptin and tamoxifen.
I was given bone and CT scans after surgery & before i started chemo which worried me as did they think it had spread??.. Not sure if its because my DCIS was 80mm or also having several invasive bits (biggest 2cm) that were quite aggressive but although it was a nervouse wait, nothing was found, all of me was clear and i had 1mm clear margins from the surgery too.
Just wanted to let you know that even with quite sinister initial findings, the rest of the body can be ok.
Take care
xx
Thanks Artemis17. It’s always good to get a bit of reassurance from other people’s experiences. I hope the treatment is being kind to you. Good luck with it all xx
Cycle 5 Herceptin/Docetaxol, Day 1
Thank you for your kind wishes and, Linda, Amber and anyone else having another cycle soon hope it went well.
What a weekend. Strawberry Tea at church. Kids came to help me with the marble game so I thought I’d have a go on the tombola stall. Lots of lovely prizes so I chose my five raffle tickets for a pound any numbers ending in 0 wins the same ticket stuck to the prize. Three tickets in and bingo I proudly handed my ticket to the lady. I chatted to a friend of mine until she looked passed me and pointed at a rather beetroot red lady coming towards me and said “Oh Sandy”. She had a hairbrush in her hand with the number 60 on it. God’s certainly got a sense of humor or he’s telling me im going to have lovely hair again. 
Sat - Night it was both my dad’s and brothers bithday and we had a barbeque. It was great and my brother and his partner Dawn bought me a lovely rose bush in pink called ‘Youre Beautiful’ with a purple ribon on the label. 
Sun - Went to Hubberds Hills (a lovely park between hills with a river) in Louth for a picnic with OH family and grandkids and my two complete with young daxijacks dog who learned to swim. Another lovely sunny day in relaxed company and we all played cricket.
Mon - Nurse for blood went for vein in left and immediatley said ive got to come out it’s gone hard. Over to the right and with a lot of fiddling and sweat managed to find a slow and reluctant offering.
Tues - Off to hospital for dreaded Herceptin/Docetaxol. Receptionist told me my W Cell count too low yesterday and could i go for another test. 
Reduced to tears OH propelled me to the appropriate dept and got a number in the cue for us. No: 13. Actually this nurse went to a completley different vein further up and got it easy. Had to wait 1hr for the result which was a little higher and just within limits. Then just about to be hooked up the nurse asked if I had taken my steroids last night I replied “what steroids no ones given me any”. They gave me the steroid via infusion before the Herceptin then Docetaxol. I started at nine and it was now 11.30. I was a nervous wreck as OH not allowed to stay and new I wouldn’t be home till 6pm. As it turned out the time went quickly and no further problems.
Still feel ok now. Normal in fact but after reading your posts some of you have had SE’s after a few days so am following Linda’s post and have started the Paracetomal. Thanks Linda.
Best wishes to all of us starting new cycles or drug regimes. It’s good to know were not alone. Will keep you posted. Lv n Hugs Sandy.x
EC cycle 4 day 14
Afternoon Angels,
Just returned from a couple of days away visiting son and his lovely girlfriend. Michael Buble was lovely. He’s so warm and genuine - so enjoyed that program on Sunday evening. Went with son’s girlfriend and she was probably more excited than me! It’s the first time I’ve been to the O2 - it’s unbelievable! Managed to do a fair bit of dancing and arm waving. Think it was Sunday afternoon when I realised that I actually felt happy and really ok again. After next treatment I’m planning to hibernate for at least a week if not longer.
Seeing onc tomorrow. Have written out a nice long list. He’ll be glad to see the back of me! Do I dare ask about going to New York between chemo and rads? I think a lot is going to depend on whether I can keep on schedule. Hope, like you Carol, they can find a larger - or any - vein next time!
Hope everyone’s spirits are lifted for a while and that aches, pains and all s/es are diminished.
Moira xxx