I just wondered if anyone has any thoughts on the psychological impact of having a neo-adjuvant treatment plan (chemo first) - especially when it doesn’t go according to plan. I was diagnosed Dec '07 with IDC - Grade 3, tumour size 3.5cm. Consultant decided my treatment plan would be chemo first followed by surgery and then rads. After 4 x cycles of AC, the lump shrunk to 2 cms, but there doesn’t seem to be any further shrinkage whilst having Taxotere - had 3rd Tax last Tuesday and am booked in for an MRI scan this Friday to see what’s happening with the tumour. It was hoped that the chemo would shrink the lump to enable me to have a lumpectomy, but this now seems unlikely and I think I will end up having to have a mastectomy. All along, I have put myself in the mind frame of having a lumpectomy, so now it is really hard to come to terms with the fact that I will most probably have to have quite radical surgery. My concern is that having a treatment plan this way round means that it is can have quite an emotional impact on the person psychologically. Since being diagnosed in Dec, I have felt this lump nearly every day and have been driving myself mad as to whether it is gone down, grown or is staying the same. The situation can change within minutes, one minute I think it has shrunk and then the next I think it is growing again. As well as trying to come to terms with a cancer diagnosis, the resulting treatment plan, I am also having to deal with the fact that every day I can feel a lump that has the potential to kill me which seems like a form of mental torture.
Hi Doylej
I was in exactly the same situation as you. IDC, grade 3, 4cm tumour, plus 1 lymph node affected. Diagnosed June 07. I had 6 lots of chemo first followed by an operation, rads and herceptin (which I’m still on). I could definitely feel the lump shrinking with the 3 lots of FEC chemo I had, once on the Taxotere, I wasn’t sure what I could feel. I kept feeling the lumps regularly and my mind would play tricks on me. what the oncologist looked for when he examined me every 3 weeks, was the fact the lumps had shrunk but also that the lump had softened up too. When it was finally removed, it was only 7mm in size. The lump in my armpit had also shrunk a huge amount but I could still feel something. If you have chemo before the operation, at least you can tell if the chemo is working but psychologically it’s very hard because you know it’s still in your body. My oncologist did get my hopes up that I’d be able to have a lumpectomy but that was not to be due to widespread DCIS (I was always going to have to have a mastectomy) and I was extremely upset about it. The lead up to it was hard but from the moment I was in hospital, I was so well looked after and had so much attention, I didn’t have time to feel sorry for myself anymore.
Anyway just wanted to share my experience with you which shows that the chemo really did work and that you can actually feel it working. Wishing you the best of luck for Friday. Please do let me know how you get on.
Best wishes
Ruby xx
Hi Doylej,
I can really relate to your post! I was dx in Dec '7 with grade 2, triple neg,tumour size approx 5cm and have had 4 X AC and 3 X Taxotere; last Tax due this Thursday. The AC definately softened and shrank the tumour and my oncologist says that a lumpectomy is “a possibility”. When my onc examined me before my last treatment she said that she can hardly feel a lump but she examines me whilst I’m sitting up and when I lie down I can feel a lump, over my rib. Over the last 2 cycles of Tax the lump has felt tender and I’ve had some aching in my breast. I’m paranoid that the lump is growing again. I lie awake at night feeling the lump, sometimes I convince myself that it’s got smaller at other times I’m panic-stricken that it’s growing.
As I near the end of the 8 chemo sessions,friends keep telling me that “I’m nearly there”, “it’ll soon be over” etc but I’m dreading the appointment with my surgeon when he will decide whether I’ll have a lumpectomy or a mx. I have done some research into mx and immediate reconstruction and I’m trying to prepare myself for the worst. The thought of radical surgery scares the hell out of me.
I have certainly found the psychological impact of neo-adjuvent chemo to be more difficult to deal with than the physical impact.
Best wishes and good luck with the rest of your treatment. x
I really relate too.
I had 6 cycles of AC chemo before surgery in 2003/2004. I found I couldn’t bear to touch my lump so each cycle I saw my onc he’d say: ‘And how do you think it is?’ and I didn’t know. My lump seemed to shrink…I had a scan after 3 cycles so carried on with 3 more AC (that was the protocol then). But the lump then actually grew and even split in two so I ended up with a mastectomy. I was disappointed not to have WLE but found the surgery much less traumatic than I expected. I subsequently had taxotere after surgery. I know its hard to believe but living with the lump won’t endanger your life any further…if the cancer has spread it will already have spread and the aim of chemo is to knock out those micro mets…statistically there’s no difference in survival rates of neo adduvant and adjuvant chemo (assuming similar tumours.)
I’m living with lumps again…this time with a regional recurrence where I have sevreal lumps and thickenings around my neck, shouldwe bones, chest wall. I do feel them this time round and know those awful feeling of has it grown, has it shrunk…but I also have learned to be quite disciplined not to feel every day…for me not feeling helps me to pretend they’re not there.
I think its good you’ve raised this…the psychological impact of neo adjuvant chmeo isn’t much discussed and more and more women are having it. Now that FEC/AC and tax are both more commonly given before surgery than they were 5 years ago I think the anxiety is perhaps worse…in my cases I had the tax adjuvantly and the lump had gone and in many ways that was eaiser.
best wishes
Jane
Doylej-
I do understand how you feel. My onc surgeon and onc have decided it should be chemo first to shrink and then surgery, last rads.
I have completed AC last week, and am up for Taxotere at the end of the month for 4 more cycles. My lump was 4.27 cm, and it doesn’t feel like it is shrinking to me, it feels larger. It is hard to tell, though. Onc says it will first soften and then shrink. I am terrified about Tax – it seems to work in the reverse.
Psychologically, it is very hard. I carry the cancer with me each day. I feel the hardness of the lump and know it is still inside me. I can’t wait till its time for the new run of tests…MRI, scans…to get the real facts rather than the imagined. I would have preferred to have them in between the two chemos, personally.
In the end, at least for me, it is a matter of much questioning and learning about BC but also understanding that the doctors involved have a plethora of experience and knowledge greater than my own. I do not bow down to doctors or think of them as gods…that was my Mom’s generation…but I do trust my oncologist and my onc surgeon. I will be seeing the onc surgeon next week…so hopefully there will be something more than fear to go on for me!
Emily
xxx
Thank you ladies for all your responses. I will let you know how I get after my MRI on Friday. Yesterday was a bad day, my affected breast was very, very painful - not sure if this is a good or bad sign. The skin above the tumour has actually reddened, so this is a bit of a worry. As JaneRA says, neo-adjuvant treatment seems to becoming more and more popular and the psychological impact of having a treatment plan this way round should be considered by the medical profession. Jacqui xx