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Hi everyone

I was dx last wk with D Inv stg 2/grd 2 but concerned as it has definately grown quite a lot in a wk, feel it is higher grd, C chemo spec tomorrow, they r going to re-measure, On dx said it wld not grow in following couple of months b4 chemo? I am not a panicky person, know it is not from swelling of biopsy as didn’t grow till whole week after biopsy. Am worried this will have effect on treatment/prognosis etc, if rapid growth. Don’t mean to sound stupid or a worry wart. Had MRI today, results tomorrow, waiting for CT+Bone Scan, having S Node Biopsy 22nd.

Don’t know if anyone can help, have been given option Neo-tAnGo trial is anyone else on it/does anyone know abit about it? Tried to look into it, concerned as NICE don’t recommend Taxol on this type of cancer. Spec. said that is just because not enough test done yet and obvious reason for more trials.

I am 39yrs with a 3yr old Boy who is my world and my partner has been great apart from he is diabetic (for last 37yrs) and the shock has effected him so been looking after him as he has had a couple of hypos in last week, but hopefully we will get through this together.

Sorry to go on, never used a forum b4 and not even sure if done right and how to reply but will find out.

Any info appreciated.

My thoughts to everyone on this site.

JulieL

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Hi Julie i have had bc too, and am just getting over the ops, not had to have chemo but just wanted you to know that even though i can’t help you on this one, except to say that you will find lots of support on here from everyone

lots of love

Alison

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Dear Julie

I am sorry to hear of your recent diagnosis, welcome to our forums where I am sure you will continue to receive lots of helpful advice and support from our users.

Breast Cancer Care have published a ‘Resources Pack’ specifically for anyone newly diagnosed with breast cancer which can be ordered on line, it is filled with information to help you better understand your diagnosis, test results and the various treatments available. You can order via the following link:

breastcancercare.org.uk//content.php?page_id=7514

You are also welcome to contact our freephone confidential helpline on 0808 800 6000 for further support, advice and information. The helpline is open Monday to Friday 9am-5pm and Saturday 9am-2pm.

I do hope you find this information useful.

Kind Regards

Sam
Moderator
Breast Cancer Care

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Hi Julie.

I was offered the Neotango trial and I’ve already had my first chemo yesterday. You say that youare not sure if this will work with your type or cancer. I have high grade ductal invasive stage 3 . If they’ve offered you to be on the trial they should give all the information, booklets for you to read. Anyway , you cand find more information on this link:

cancerhelp.org.uk/trials/trials/trial.asp?freetextsearch=&searchtype=select&trial=9787&trialno=5793&spage=3&objective=0&cancer=68&stage=0&phase=0&treatment=0&location=0
I hope this would be useful for you but, anyway if you have any questions about it ask them they should give you all the information you need or let me know if Icould help.
Take care ,
Hopes

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Thanks for the replies, it helps.

Hopes, can you let me know if you opted for the Neotango trial or not, don’t worry if don’t want to say. I hope it went not too bad yesterday and that you are ok? It would just be good to know someone else on the trial. They did give me the info, I think I just went overboard looking on the net and some things appeared a bit contradictory.

My thoughts again to everyone.

JulieL

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Hi Julie, another good site is www.cancerbackup.org.uk, i’ve found it great for info

alison

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Hi

Just got back from seeing Chemo Spec. I had concerns that the tumour had grown and so it was measured again today. Two weeks ago it was 2.2cm today it was 6.1cm so looks like a lot faster growing grade than they 1st said, will have metal coil fitted Friday guided by US so will know the size officially as on 1st US. Really scared now as things are just so long B4 treatment and scared of the rapid growth. I’m sure a lot of you feel the same and my thoughts are with you. I have S Node Biopsy on 22nd and they said it would be another week after that b4 the results come back, then the 1st chemo on 29th. The Spec. today did say though that if the US on Friday confirms rapid growth they may start Chemo Mon 20th and do SNB after she said it is radical but she is also concerned of the growth, which make me even more worried. They also say this may be a sign that it would have spread so not a happy bunny at the mo. I have agreed to go onto the NeoT trial as felt my questions were well answered. Any comments or advice from anyone who has or knows about a more rapid growth tumour would be greatly appreciated. I am trying to be strong for my OH and my 3yr old as I know it is us all that are being affected and I know positive thinking will help but this news today has knocked me for six.

Take care everyone

JulieL

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Hi Julie

Please try to be positive. I was dx on 16th July with bc and then told on 26th July after ct scan, mri scan and bone scan that had gone onto my liver. I am 39 years old with a 3 yr old and an 9 month old, and I can relate to all the emotions you are feeling about your child and fear of the unknown.

I started my chemo last week, and the 2 weeks between that and the last diagnosis was the worst thing ever in my life, worrying it had spread more, growing quicker etc, but now that I have actually started my chemo, I seemed to have relaxed a little, been so much more positive, as I know that I am now fighting back with everything I have and am back to living my life as normal before I knew, as I became a little bit of a hermit for 3 weeks, as was so devastated and numb when I found out.

Also, the chemo when it started was not as bad as I had feared, as was absolutely petrified, but was OK (rather have been doing something else), but hey ho. Got my 2nd lot two weeks today. No side effects as yet to mention, so doing well, but know that this probably won’t continue and have already bought a wig and eyelashes so am prepared.

I have no advice or comments on your tumour, but there will be others that will post to you and help you. Try to stay strong and hopefully things will be OK. Am thinking about you and hopefully others will help with your questions.

Take care
Love
Dawn
x

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Hi Julie

Sorry you have had to join us, but welcome to the site. This has been an invaluable source of help, advice and support when I’ve needed it, and I know others will agree.

I was diagnosed on 4th April, age 41,the tumour was picked up on an ultrasound but an MRI confirmed it measured 5.2 cm x 2.5. Because of the size, my Consultant and Oncologist recommended chemotherapy first to shrink it, then a mastectomy. I also had a sentinel node biopsy which confirmed the cancer had spread to a couple of the lymph nodes, so eventually they will be removed too. That first two weeks was awful, so many scans and blood tests, and like you due to the size, I was worried and wanted to get started on the chemo ! My first session was 27th April and I’m on the Neo-tAnGo trial. I’m on Treatment B1 (EC x 4, folowed by paclitaxel & gemcitabine x 4). This was recommended to me, no-one forced me to go on the trial, but I figured that they knew better than I did, so I went for it !

After my 4th chemo, I had another MRI which confirmed the tumour had shrunk to 2.5 cm x 2. This was brilliant news to me, as you can imagine ! I’ve now had 6 sessions of chemo, and my Oncologist said she couldnt even feel the tumour when I saw her last Friday. Today I received a letter from the hospital, confirming my mastectomy for 3rd October, after this will be radiotherapy, herceptin for a year, and sometime next April, my reconstruction.

It’s now been over 4 months since I was diagnosed, and I am feeling so much more positive now. At the begining I was absolutely terrified, I’ve got two daughters age 14 and 10 and to see them cry when we told them broke my heart. They are absolutely fine about it all now, we’ve kept nothing from them and sometimes they even watch when my chemo is being done (I have mine at home). I’m also lucky to have a brilliant supportive husband and friends too, and I know it sounds weird but we’re all used to this situation being part of our lives now. We know there’s still a long way to go, but the chemo is definitely working and I can finally see the end of the tunnel that everyone else was talking about!

Julie, I do feel for you, I know how scary it all is, and there’s so much to take in, but believe me you will get through it. Don’t get me wrong, you wll have some bad days when you hate the world and everyone in it (I know I did !), but you will have good days too. Maintaining a sense of humour has helped me !

Once you get this first couple of weeks out the way (a whirlwind of scans, etc and of course your sentinel node biopsy), and get started on your chemo, you will feel much better - promise !

Please let us know how you are getting on

Lots of love and a big hug

Julie xx

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Hi Julie, i am so sorry you are having to go through all of this. My sister also had her first scan which showed a 3 cm tumour
in Egypt, (they also said it was DCIS) she came home and 10 days later it was 3.9cms. Hers is a grade 3, she had to wait 2 weeks for her results and another 2 weeks to start chemo, even then we had to push for it. The doctors tell you not to panic, but its easier said than done.I have been on the inter net a lot, because she doesnt, want to waste her valuable time, and i am also a nurse so she looks to me for answers. There are a lot of people on some of the other sites that have had very large tumours and have recovered very well following treatment. You will feel less frightened when treatment has started. Every cancer is different and your treatment will be suited for it. Try not to panic. Faster growing tumours respond better to chemo than the grade 1 or 2s and you are young and able to cope with any treatment they can through at it. All the best Claire

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Hi Julie

So sorry to hear of your diagnosis, there are too many of us.

I was diagnosed just 2 weeks ago and am starting chemo tomorrow. I have a small 2cm tumour in right breast and positive lymph nodes and it is grade 3. I know my lymph nodes are growing very rapidly -they are huge now compared to when I first felt them and it is so scary thinking it is spreading so rapidly and growing by the second.

But be reassured that treatment starts so quickly that it really won’t have a chance.

This time is definately the worst time you’ll have - the scans are horrible and the waiting is terrifying but we all need to know. I hope so much that the results are good for you.

Everyone told me on this website that you’ll feel better once you get a treatment plan and start treatment and its true -I can’t believe that I have got my head around all this stuff so quickly and can’t wait for tomorrow to start fighting this horrible thing.

I have a 2 year old and a 2 month old baby and the first week my heart was broken every time I looked at them but believe me, your 3 year old will get you through this. They are so resilient and you won’t be able to wallow in sadness as he won’t let you -you will be positive for him and your hubby. You will have some bad days and you must let yourself have them, you need them to move on. I’ve hit rock bottom in the last 2 weeks and have come back fighting.

This website is invaluable -i’ve had so much support its unbelievable.

Let us know how you get on with scans etc and if you have any questions -just ask.

Hannah
xx

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Hi All

Thank You so much for the replies and support it is a great comfort, sorry it has to be from people who are going through such a horrible time, but as said, we must all be positive. Still can’t get over the 4cm increase in such a short time but Im sure I will feel more positive when chemo starts. I don’t know which arm of the trial I will be on as only signed consent today. Hoping they can bring the chemo forward, something I never thought I would think!! Got coil being fitted Friday and have asked to make sure they numb the area more than when they took the 1st biopsy as on the second ‘clump’ he took he missed where he had aneathatised me!! He said sorry that must have hurt!! Just a bit but never mind, had to laugh, (a while later I add). I truely appreciate the advice and support etc. and if anyone needs to have a natter please reply and I will try to reply within tests and with a Cheery Note. I hope it is true that grade 3 responds better as it has helped to know that. I am so glad I found this site and I’m sure we will all get through this. I’m normally a bit of a whacky person with a good sense of humour so won’t always sound negative just still very scared so thanks again.

Love to you all

JulieL

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Hi Julie,

sorry, only just caught up with your thread. I’m really sorry you’ve had to join us, but ‘welcome’ to the site. I’ve no doubt you have already discovered what an invaluable source of advice and support it is!

I was diagnosed with bc in March, age 34. I had a right mascectomy and total axillary clearance a week after diagnosis. Not much time to get my head round things!!! My tumour was found to be grade 3, 4cm, hormone receptive, HER2 + and I had nodes involved. I started chemo in May, I am taking part of the TACT 2 Trial so am none too familiar with the neo-tango, but I know there are plenty of site users who are on it so I’ve no doubt you’ll get any help or advice you need.

Like yours, my boyfriend is also an insulin-dependant diabetic. So, I’m busy trying to look after him while he’s busy trying to look after me!! We had a bit of a scare a couple of weeks ago when he all but had a hypo. He fell over in the bathroom and when I ran upstairs he had been trying to test his blood sugar but had been unable to. I had to do it for him then get some sweet goodies down him asap!! It was scary stuff to be honest, particularly as I was feeling v.ropey from my chemo. I don’t know what I would have done if he’d gone into a diabetic coma or something!

I wish you well with your treatment and as you await test results. Take care and be sure to keep in touch,

Kelly
-x-

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Dear Julie,
I’m sorry Ididn’t reply earlier. I’m in the Neotango trial. As Isaid , I’ve already had my 1st chemo session with them. First thing , they are NOT experimenting with drugs. They use drugs that have been already shown good results with breast cancer treatments. They add 2 extra drugs to the standard treatment that you’ll have in the NHS to see if that improves the results.You are randomly assigned , by a computer , to one of the 4 groups they have .The difference mainly is the order in which they use the drugs. I can’t tell whether you should accept to be in the trial, because it took me quite a headache to make up my mind about it, but , just ask as many qyestions as you have. Write a list of questions ask somebody close to you to read the information as well , so they could think about other questions. . Where were you offered the trial, in London?
Good Luck with your decision.
hOPES

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Thank You again so much for your replies and support.

Hannah11… I read on other thread your bone and ct scan came back negative I am so so pleased for you. I have been scared of the growth of my tumour as originally grade 2 but seems to be grade 3 now, after they inserted coil friday by US they think either 2 tumours close together or conected by threads?! will know more on Wed. Having Sentinal Node biopsy on Wednesday After starting Chemo Monday this is normall not done as of risk of infection but they were worried about rapid growth and couldn’t bring SNB forward, but atleast it means getting chemo earlier as wouldn’t have started till Wed 29th. I hope you are still fighting back and enjoying your 2 young children as much as you can, they are such an inspiration to you and give you even more to fight for. I get my bone and ct scan results hopefully wed, they have already warned me that because of fast growth it may have spread so really scared but still going to be as positive as poss and willing to fight this bl…dy thing. My 3yr old keeps me entertained I just Love him so so much have to get better. Again so pleased that your scans are negative, keep on in there.

Julie41… I have definately signed for the Neo-Tango trial and start Monday on the same one as you B1…! Which is the one I wanted to go on, couldn’t believe I was actually happy about having a chemo!!! I am so pleased it has shrunk your tumour and you can see the end of the tunnel. Glad your husband is supportive and your children are ok now. My OH was a bit distant at first but I now know it was because he didn’t know how to handle it, He is now so supportive and I so appreciate that. Thanks again for the support etc.xx

Hopes… Thanks for the info about the trial I had looked into it but it is reassuring to hear from others on it - experiencing it. I did write a lot of questions down and I had answers that I could understand and rationalise. My treatment isn’t in London but Peterborough is yours in London? All my very very best to you xx

Princess18…
.I hope it is going ok with your boyfriends diabetes? Mine has just had a vitrectomy 4 weeks ago and on friday after spending all day in hospital having rest of my scans and coil fitted into tumour my OH had to wait to see a doctor about his eye as he now has iritis!!! What a pair!! My OH has been diabetic since he was 18months old insulin dependent 4x a day. Do you have the info in the fridge with green cross sticker on outside of fridge if needed and do you have ICE numbers on your phones which I didn’t know about until recently? Just thought might be useful if you don’t feel well under treatment and then don’t need to go through all his medication, normal sugar levels etc. if he has a hypo and need to call people out. My OH is even more awkward now as well as he also has crohns disease, as said what a pair. At this rate our 3yr old will be looking after us!!

dm68…I am so glad that you are not getting no side effects so far with the chemo. Wig wise I have 1st appt. to see someone Monday am b4 chemo starts in the afternoon. My hair at the moment has took me so so long to grow and is actually down to my bottom!!! so I know it is going to be a big shock. Can’t face cutting if first but will get wigs ready. I know it is the least of problems in the great scheme of things my 3yr old and OH, family and friends are by far more important but my assigned nurse has said even though I’m trying to laugh it off about being bold having such long hair will be very disturbing. I must sound so fickle and shallow but it is not meant that way. I know I struggle with the thought of being here and having energy to play with my 3 yr old so I cannot even begin to imagine how it must be for you with a 9 month old as well, you sound such a strong person, I hope you have lots of support and please accept all you can.

THANKS AGAIN FOR ALL THE SUPPORT AND REPLIES, I HAVE SOMETIMES HAD A MESSAGE AT BOTTOM OF REPLIES TO SEND PRIVATE MESSAGE (LINK) BUT DON’T KNOW WHAT TO DO!!?? I’M NOT TOTALLY STUPID BUT DO HAVE MY BLONDE DAYS (ALL 31 INCHES OF IT!!) (FOR NEXT COUPLE OF WEEKS ANYWAY!!!) MY LOVE, THOUGHTS AND OH JUST EVERYTHING TO YOU ALL OUT THERE.

LOTS OF LOVE

JULIEL
XXXX

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Hi Julie

sorry to see you’ve joined our club - but a big welcome

i too have been offered the neo tango trial and see the co-ordinator on monday for the information

hopefully we can get it started soon

the good news yesterday was my bone and ct scans were clear - yippee!!! but they cannot seem to assess the size of the lump as the scans all say something different to what we can feel! so, we may never really know just how big it was!

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Hi quisie

Thank you for info, especially such a quick reply, can you let me know if you get this to know if doing it right? Also if right can you advise how to request private message if someone would like to? Thank you again and hope this gets through. Sounds like I’m trying to contact someone from another planet!! even though we are all on the same one! Feel this site has given me so much and I hope you do as well. Thanks again, JulieL xxx

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Hi Julie

To do a private message, in the box just under Add your comments, you put the persons id in to the “send a private message to (optional)” ie: yours would be JULIEL, mine would be DM1968. Hope this helps.

Thanks for your message too, am not really that strong, have had lots of sad and tearful days, but been better since starting my chemo and I have to carry on for my children and be strong, cos they don’t understand really. But this site helps too, getting lovely comments from people like you and everyone else.

Take care
Love
Dawn
x