I’m new to the forum having been diagnosed on 17th December with a 1.8cm grade 3 invasive ductal cancer, at the moment it doesn’t look like my lymph nodes are involved, but they obviously won’t be able to tell until they operate. I’m 30.
I’ve been offered two treatment options by the consultant; the first is to have a lumpectomy followed by chemotherapy and radiotherapy. The second is to have a course of chemotherapy first to shrink the size of the lump with the hope of removing less tissue although they have told me that there is no guarantee that the lump would shrink. The other factor for me is that my partner and I very much want to have children.
If I opt for surgery first they are talking about an operation date in the next few weeks so it seems that it would get the ball rolling quicker. If I opt for chemo first I would have to see a fertility specialist first which would hold up the treatment starting and that worries me.
I’m very confused and finding this a very difficult decision to make.
On one hand I feel lucky that it seems to have been caught early and I have a choice of what treatment I want, on the other hand I wish the decision had been made for me because I’m not sure what’s best.
It would be great to have some advice if anyone can help? Has anyone else been in a similar situation?
I have an appointment on Tuesday (5th Jan) to see my consultant again and am trying to find out as much information as possible before then. I think they would like me to have made my decision by then. I also have an appointment with the fertility people on Monday (4th) so hopefully their advice will help me in my decisions…
i too am new to the forums although i was diagnosed two years ago, like you i was offered these two options i chose surgery first followed by chemo and rads i think its a personal choice really but understandably a difficult one all i can say is follow your heart i hope that you get some answers on the 4th i know how hard this is i am in good health now even thoughi had lymph node involvement good luck
So sorry you had to join us.I can’t offer much advice on whether to have chemo before or after surgery but I can say that my tumour was 35mm and removed successfully with lumpectomy. I had my lymph nodes out as well and it was in one. I’m a little older than you (42) and don’t have kids, though my partner and I were trying for one.I am having chemo now, to be followed by rads.
difficult one, my tumour was about same size as yours and grade. I wasn’t given the choice really and to be honest I wanted it out of my body. I was 37 and hoping to have a baby, but decided that it was more important to get me well and sort out the BC first. If it means I remain childless, so be it. It’s hard, but I want to enjoy what I have with hubby. My health took priority over being a Mum. There was no time for me to have eggs frozen either, perhaps if I had persisted and said how important it was, it may have been different, but being diagnosed certainly put a different perspective on things for me. Everyone is different and there is no right or wrong in this.
Has the Oncologist given you any stats? I also tested HER2+ which is more agressive so this also helped me make my mind up! I wish you the best of luck in whatever you decide x
thanks so much for replying to my post. I’m sure this is one of many decisions on a long journey and it’s lovely to know there’s so much support out there.
I’ve not had a chance to speak to an oncologist yet but I know so far that it’s oestrogen and progesterone negative - don’t know about herceptin yet.
Sorry you have had to join us here. I really would not be able to advise on which route to take, I was just told I had to have a mastectomy so I guess I had the decision made for me. I hope you can make use of your biopsy results and support of the breast cancer nurses to make your decision. Good luck!
hi i was diagnosed with bc on december 2nd, im 40. my consultant recommended 6 course of fec-t chemo then surgery. my tumor is over 5cm and have been told had for sometime!! Quite annoying considering i went two year ago with lump and discharge in same breast, just after my mam had been diagnosed with breast cancer. I wasnt offered a momogram or scan and was told probaby hormonal!! ive had first chemo on the 17th december and wasnt too bad, they hope to srink tumor then do surgery as was told easier too remove when smaller.
I was diagnose on Nov 9th and like joshina I’m having chemo before surgery. This seems to be the less common route but I had no choice as my tumour at diagnosis was too large to be easily removable with surgery. I’m having 4xFEC followed by 12x weekly Taxol. Surgery will either be between the two types of chemo or after it’s all finished depending on the advice of my breast surgeon.
I’d find it hard to make the decision myself as to whether to have chemo or surgery first so I’m glad it was out of my hands. I have two children and no plans for more so fertility wasn’t an issue for me (in any case I’m 43 so a bit long in the tooth to go through that again!).
The advantage of chemo first is that it is possible to actually see a response to the chemo which you can’t do if the tumour has already been removed. I’m due my 3rd FEC on thursday (7th Jan) and there has already been “significant shrinkage” in the tumour - I was able to feel this for myself even before the 2nd FEC, which was very reassuring. The obvious disadvantage is that the tumour is in your body for longer with the increased risk of the cancer spreading esp if it doesn’t respond to chemo.
Given that my tumour was very large then chemo first also has the advantage for me that there is still a slight chance that I may escape a full mastectomy if there is sufficient shrinkage, I’m trying not to get my hopes up as my surgeon was pretty sure that a mastectomy would be needed but it would cetainly be a bonus.
I suspect that if surgery first had been an option for me and fertility was an issue I would probably have gone for surgery first to buy myself more time but it’s hard to say for sure. I hope the fertility people can give you some help with your decision as it must be an extremely hard one to make.
My other thought, and I realise that this may be easier to say as someone who already has children, is that I wouldn’t want to put myself at any extra risk in order to increase my chance of having children in the future. I say this because, for me, the hardest thing about having bc is the fear that my children (currently age 4 and 2) may have to grow up without their mother. The effect of my diagnosis on them is of far more concern to me than any effect on myself and I will do absolutely anything, no matter how hard, to give the greatest chance of seeing them grow up.
Good luck with your decision and please let us know how you get on.
Hi Stokeygirl, I had surgery years and years ago but thought you may be interested anyway…My tumour was 5.5cm and I had a chemo regime called CHOP to reduce the tumour before surgery. The good thing was that it showed that the tumour was responding to treatment but I still had to have a mastectomy afterwards… I was hoping that I may not need to have one. That was all in 1989 and I had a mastectimy with reconstruction and LD Flap. The operation went well and I am still happy with the look of my new breast and the scars have become pale and less noticable. Good luck tomorrow. Love Val X
Hoping everything has gone OK for you today. I have only just seen your post, but wanted to let you know that I did have fertility treatment between surgery and chemo - we caught my cycle just in time (or possibly just one week late, as sadly, it didn’t work) and it only delayed chemo by one week.
As I say, sadly for me, the fertility treatment didn’t work - only one egg was harvested, which didn’t fertilize properly - but I would have regretted not trying.
The important thing is to look at the timings, and hopefully your appointment today may have given you a better idea of what you’re looking at. With mine, they did a scan on me there and then at the first appointment to see where in my cycle I was, and got started on the drugs the following day.
i would have thought with a 1.8cm tumour they could easily remove it with a wle… im not very big busted… 34b but had a 1.3cm IDC removed from my right breast 3 years ago and a 1.9cm IDC removed from my left breast last year both only required a lumpectomy…the first didnt even need chemo at all but the 2nd one had chemo after surgery
the first time i even had to have a further excision to remove some extra tissue as there was evidence of DCIS in the margins… and my surgeon said he sometimes has to re-excise as much as 4 or 5 times but i only need the 1.
the 2nd one he removed a fairly good area as the total size including DCIS was 2.5cm.
i wasnt offered fertility treatment prior to chemo when i was 40 even though i had been to see my consultant 12 months before about having another baby… seems a bit of a shame as i know other women over 40 were offered it… but still planning to try for a baby in about 12 months.
Thanks to you all for replying to my post and for all your advice and support, it’s been a whirlwind couple of days.
I saw my consultant today and have decided to go with surgery first (a wle), my operation date is next Thursday (14th Jan).
The over-riding thing for me is that because it’s a grade 3 and therefore more aggressive, it seems there is more risk of it spreading. I’m anxious to get my treatment started as soon as possible and avoid the risk of it spreading if I can. Slightly distressing thing is that it’s a triple -ve so I won’t have any follow up after chemo which is a worry.
As Linda said the advantage of having chemo first would be to assess how the bc responds, but the increased risk of leaving it in my body if it doesn’t respond… I don’t think I’m willing to take that chance. Maybe if it was a lower grade I would feel differently?
Anyway, they have also said that if I do change my mind about treatment options in the next week that’s ok too, which is reassuring.
As for the IVF, I saw the fertility people yesterday and they were lovely and very reassuring. I’m going for preliminary tests this week to assess my current fertility status but have decided I’m going to put any decision about this off until after my operation and post operation results - it’s nice to know it’s there as a back up though and I still have some time to make this decision.
Feeling good now I’ve made my decision, feel like I have regained a tiny bit of control again (for now at least, lol). I think it’s the right one for me although only time will tell…
Thank you so much for all your messages and good wishes, they’ve really helped
I am 35 and have had exactly the same diagnosis as you. On 1st July 2009 16mm grade 3 triple neg no nodes. I had a WLE first and then the chemo, at least when the chemo is out of the way you are nearly done and you dont have to go through the op, i think its better that way.
I dont have any children so went to see about all that fertility stuff! All these decisions are really horrid aren’t they! I didnt go through with it. Didnt want to delay treatment and put extra drugs in my body e.t.c. but its good we have a choice. Anyway just wanted to let you know that i had 5 FEC’s and had a period after the last one, so shows something is still working down there!! You are 5 years younger so your chances of keeping it all going are good.
There is a thread i started called 1st chemo tomorrow in september, if you want to read about what it can be like. Everyone is different.
Well done though, you sound really fab !
If you have any questions or anything PM me.
Georgina x
P.S I used the cold cap and the picture is off me after 5 sessions, quite thin on top but ok with hats on. Worth considering if you are offered it.
stokeygirl i think everybody who is triple negative has the same worries as you do… when i was first Dx with TNBC i was so shocked and worried about the outcome and what could happen after treatment, but as time has gone by (now almost 3 months post chemo 4 x epi 4 x cmf) and about to start rads on thursday which i know is my final bit of treatment but definitely dont feel as worried as i did at the outset.
TNBC is only recently been recognised so its something they are doing a lot of research into so over the next few years there may be even more advanced… the first 2 years is meant to be the highest risk of recurrence for TNBC and this is when you are kept a close eye on.
although being a grade 3 means the tumour is more aggressive than a grade 1 the fact that it was less than 2cms means it was caught fairly early otherwise it would have been much larger in size… larger tumours and those more advanced are more aggressive again so dont start worrying too much about the what ifs until you have the full picture which you will get after surgery… even a small grade 3 TNBC tumour has a positive outlook.
Hi, I had 6 x FEC last year, but was invited to go on the ‘Option’ trial. It involved having pellets injected into my stomach monthly throughout my chemo, but one of the drivers behind the study is to try to protect fertility in women who want to have children after their chemo has finished. It might be worth asking if your hospital is participating in the study.
Hi,
I had pretty much the same diagnosis as you - triple neg, grade 3, and was worried about fertility also. My advice is to keep pushing it as with me it all got too delated and was too late in the end. You need to really push to get on with IVF after surgery or otherwise it will be coming up time for chemo and then they start to pressurise for that and don’t like you to delay for IVF so, best to just get on with IVF as soon as you can if you are goig to do it.
Best of luck on the 14th,
Jess
I had a mastectomy & all lymph nodes removed, and honestly haven’t found it all that hard. I was lucky and had virtually no pain afterwards (just annoying and slighly uncomfortable drains) and it took just 8 weeks for me to get full movement in my arm back. My scar is fairly neat. Don’t know about WLE, but hope it goes OK for you.