Can anyone help with a dilemma I am facing, my dx is grade 2 invasive DCIS, I have undergon WLE with no lymph node involvement. The cancer was 22 mm and they had good clear margins. My treatment is to be radiotherapy and tamoxifan for 5 years.
I have read books done research etc and the info I am getting is that grade 2 over 1cm even with no node involvement should benefit from chemo. My team looking after me are great and would not like to affend anyone but any treatment I can get to increase my life expectancy however small I want. What should I do?
Thanks for reading this, I am so mixed up and emotional.
You can always ask the question chica…but if youve had no node involvement, which is great…means the little blighter hasnt gone wandering off round your body…which is probably why theyve said you wouldnt need chemo. You got clear margins, which is great, so they managed to chop it all out, no nodes involved, so it didnt get a passport to the rest of you…so the powers that be will zap you with rads to make sure, and tamoxifen to control your hormones etc.
Thanks Buttons, I am so pleased about the no node involvement hon, but on research I have done, its the invasive part of my dx and the size that concerns me that research say chemo should be offered! However I think on reading the threads on this site that it depends on which health authority you are under. I know I sound like a closet expert sorry, but the invasive bit has blood cells running through it carrying potential ‘c’ cells with it around the body. Told you I was paranoid, (terrified of the little b…ds) multiplying somewhere else.
Have spoke to my bc nurse on Friday and she told me to look on the NICE website (which is where I got most of the info) she also mentioned going for a second opinion, has anyone else had concerned about treatment offered or/and gone for a second opinion?
I was concerned when told chemo was the plan for me, so I went for a second opinion on my treatment plan. It really put my mind at rest that I was getting the best on offer and I went with the plan.
I think it’s definitely worth doing so, just to allay your worries
How do you go about going for a second opinion? Is is through your GP or do you have to do it yourself? Did your MDT mind you going for another opinion, I really trust mine just this issue is bothering me, it is really helpful to have your comments, thanks a million. If you don’t mind me asking what was your dx?
I was DX 23mm invasive tumour plus DCIS grade 3 but also had good clear margins no node involvement also no vascular iinvolvement , i still have had chemo and am now on my last cycle then 5 weeks Rads and 5 yrs Tomoxifin/Arimidex to go. I was advised to have chemo because of the grade of the tumour (grade 3 aggressive) but it was also my understanding that if the tumour was over 2cm i would be offered chemo. I think a lot depends on the grade and how much chemo would be of benifit, in my case it was only 5% but to me worth it cos i felt every % counts .Id proberly ask your onc why chemo was not offered if you are worried or get a second opinion . Usealy they put all the characteristics of the type /grade/node involvement ect into a computer and then they come up with the best treatment plan from that. If the benifit is less than 3% i was told chemo isnt usealy offered because the side effects/risks outweigh the benifits.
Hope this helps
Best Wishes
Lindiloo x
Hi Lindiloo, Thanks for your comments, the research I have found (NICE guidelines) is what you said over 2 mm chemo offered. How are you doing on the chemo? but it must be worth it any % is worth it in my opinion.
Hi GillMc
I decided to go on the tact 2 trial Epi/Xeloda and am doing fine. I did have a bit of a rough time on the epi with side effects but have found the xeloda quite easy to tolerate and have only had tiredness realy im on the accelerated chemo so every 2 weeks. Ive never had any sickness at all as they give you plenty of anti sickness meds, i mainly suffered with mouth ulcers and throat infections but antibiotics soon sorted them out. Everyone reacts differently to different chemos so no one realy knows how it will effect each individual , i know of quite a few ladies who have sailed through chemo with very little side effects .It realy is do-able as everyone on here will tell you and there is lots of meds they will give you if you do have any side effects . My hair came out about 14 days after the first Epi which strangely enough i coped with quite well (didnt think i would) and now im pleased to say its getting a spurt on and although it will be a few months before i can go without a wig and hat ive definatly got a full covering (horray) I was quite scared at the though of chemo at first but i neednt have been the chemo nurses are brilliant and put you at ease and they are always on call night or day for any problems . Time realy does go quickly and i will be finished in 7 days (Yipeeee) then on to rads planning 4th feb so that light at the end of the tunnel is definately getting nearer. Youll be fine if you do decide to go ahead with the chemo, if i can do it anyone can . I think for us (people with no node involvement or sign of spread) chemo is more of an insurance policy incase there are any microscopic cells left lurking somewhere in the body which they cant test for, so for me its worth doing the chemo even if it gives only a small % in benifit . When do you see your onc again? ask him why chemo hasnt been offered and what extra % chemo would give you,then you can decide if you want to go ahead . Please let us know how you get on .
Good Luck and take care
Best Wishes
Lindiloo x
My dx was grade 2 invasive ductal carcenoma, about 4cm. I was initially concerned about chemotherapy and wondered if I would benefit from hormone therapy instead. Chemo is not anything as bad as your mind will have you believe so I needn’t have been nervous.
Anyway I was recommended a private oncologist through a colleague to get my second opinion. My NHS oncologist really didn’t seem to mind, in fact I think they may even find it quite a commom thing for people to do.
You should voice your concerns to your oncologist, but don’t feel like you’re betraying them by getting a second opinion. This decision is one of the most important we’ll ever have to make.
Where abouts in the country are you? I am North East, North Tees & Hartlepool PCT. Do you think different parts of the country offer different treatments even though they are all meant to follow NICE?
I believe it does make some difference depending on which part of the country or even council you are in. I am in London, Hammersmith & Fulham council.
If chemo is necessary for you then you should really receive it. I think you should definitely go for your second opinion, or if you are really uncomfortable with that, have a good long chat to your oncologist about your needs.
Hope this helps some… good luck, and do ask away any other questions you have.
Hi gillmac
I live in cornwall im not realy sure if different health authorities differ, but if you do need chemo then as cecelia says you should recieve it, do go for a second opinion if you feel it would help put your mind at rest ,
Good luck please let us know how you get on.
Lindiloo x
I too had a 2 cm, stage and grade 2, invasive ductal cancer, with assoicated DCIS, both comedo and cribriform, which I still haven’t understood, some 5 yrs down the line. I had a lumpectomy and sample node removal - 3/8 nodes positive so went back for total axillary resection. One more node was positive. It was only after the pathology report on the second surgery was chemo mentioned. I had originally been told if I had a lumpectomy I would need rads, but there was never any mention of chemo and it came as a shock. When I asked why I was to have chemo and rads, I believe I was told that their protocol was to advise chemo if the tumour was 1 cm or over and because of lymph node spread they were concerned microscopic malignant cells may have have already spread to distant organs. The chemo was to deal with that, and the rads to zap any remaining cells in the breast. I understood it then, and went with chemo and rads. I don’t know if chemo would have been advised if I had not had lymph node involvement as I never asked the question, it being irrelevant to me at the time. I did have bone and liver scans at the time of starting chemo, and a chest x-ray - thankfully all clear.
I don’t really know how you go about getting a second opinion for bc matters. I have Crohn’s and have changed my gastro twice. I told my GP I was unhappy with one of them and the GP immediately referred me to another one. Some years later, in fact 2 days before being dx with bc I had a Crohn’s flare, saw my GP (a different one) and she said I needed to see a new gastro that had just arrived at my hospital - 6 months wait for an NHS referral, so I went privately to see him at the Nuffield in Plymouth. He immediately transferred me to the NHS. I think it cost £120 for the private consultation, but well worth it.
I live in Cornwall, but my nearest hospital is in Plymouth, Devon. I am a tad unhappy with their protocol for bc patients to only have mammos every 2 years, unless they have symptoms of recurrence, and from what I have read on here, most hospitals do annual mammos for bc patients, so there is a difference in different health authorities’ protocols, or even individual hospitals.
Perhaps someone else will come along soon and explain how they got a second opinion on the NHS which will help you.
Thanks so much again for taking to time to comment on this thread.
It has been a very long weekend waiting for this morning to come to be able to speak to my bc nurse about my concerns. I have spoke to her and she has also looked up the guidelines and agrees with me that I need some answers, so she has made me an appointment to see my consultant this afternoon at 4.30 pm.
I will let you know what/if any answers are forthcoming.
I must also thank my good friend Dizzie who is an inspiration and become a great friend (thanks for your listening hear) especially at this difficult time you are going through yourself hon. x
Hi I am new to this and have just read this thread. I was dx on 5 Dec 07 and after surgery (WLE and sentinal node removal)) It was confirmed I have grade 2, 14mm invasive ductal cancer with no spread to nodes. I was also only slightly oest + and because of this they have offered me both chemo and hormone treatment. The oncologist said because I have a good prognosis - 85% chance of no return in 10 years- that the chemo will only give me 2-3% increase on this. She said it was up to me and how I take risks - I dont take risks and have opted for chemo. I am only 35 and have 2 small children i will do anything to improve my chances. I am terrified of starting the chemo though !!!
Where abouts in the country are you? Just waiting for the onc to let me know what has been decided. Took my argument to them and they are looking into it for me. It would be interesting to let them know how your onc feels. I agree with you any increase on percentage for survival is worth the risk, I am only 45 and I want to be around in 10 years time.
Thanks for reading this thread and commenting it means alot. Good luck with the chemo big cyber hugs to you (((((x)))))
I live in Stockport but am being treated at Macclesfield Hospital - Cheshire. I am still really nervous and had some second thoughts over the weekend but deep down I know chemo is the right thing to do. I start treatment Monday 21 Jan all being well - am going on Wednesday for a final tour of unit, check up, etc. I hope you have some luck with your onc let me know how you get on.