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Invasive Ductal Carcinoma (oestrogen positive)

13 REPLIES 13
Linserella
Member

Re: Invasive Ductal Carcinoma (oestrogen positive)

Hi Forties, nursemakeyouwel and Horseslave, I'm sorry for the delay in getting back to you, I've found myself involved in the January chemo forum through here which now has a closed page on Facebook. Please feel free to find me on Facebook and we can always continue mutual support that way or I'll pop back here again (sooner next time!); I'm **************, Aberdeen. PM me so I know!
Forties, I wasn't given a choice of treatment at all, I was just told very matter of factly that I'd be getting chemo first, followed by breast conserving surgery, followed by radiotherapy. I still don't know why this decision of chemo first was applied to me but understand the logic of shrinking it first. How are you getting on Forties? How far into your chemo are you?
Nursemakeyouwel thanks so much for your reply, really helps with you sharing your experience and insights, you're much further on on your journey. I had no idea about the clinical staging being a main difference, interesting. None of that had been explained to me. I hope you're doing ok.
Horseslave you're going a different route with surgery first, they'll be thorough with the scans. We'll all get the same result of being cancer free but by slightly different routes! I hope you're doing ok.
I've had 2 x Tax now with the final one at the end of April (bring it on!) I think it's effecting the tumour now where the FEC didn't touch it, I think it's reducing. Final scans will confirm. Surgery still to be confirmed around end of May. I think it will be breast conserving surgery but I'm very small breasted so I think even that will be very obvious!! But I don't care so long as the cancer is gone! I wish you all the best xxx
Horseslave
Member

Re: Invasive Ductal Carcinoma (oestrogen positive)

Hi Linserella,
I too have just been diagnosed with IDC , oestrogen receptive. One lump is 27mm, the other 17mm. I have been told I will be going straight in for masectomy, possibly at the end of the month. They will check lymph nodes etc at that time? I found reading the post by nursemakeyouwell extremely useful. I Am not having chemo before the op but they said they would be discussing if this needed with radiotherapy after. So it makes sense that they want to check what they can't see on the ultrasound?
nursemakeyouwel
Member

Re: Invasive Ductal Carcinoma (oestrogen positive)

Theres always a choice, you dont have to do anything you dont feel comfortable with. It was put to me like this: As it stood my rumour was to advanced and I would need a mastectomy. I had already accepted this in my head although having read about reconstruction I knew that not having any breast tissue would make reconstruction surgery more difficult. My main concern was delaying the removal of the tumour by having chemo first, I asked directly whether this would effect the outcome and the surgeon said there was no difference in outcome whichever way round you have chemo and that they try to encourage women to have breast conserving surgery weheverer possible. He said also that if it was his wife or sister he would recommend this option. I was told I would need chemo and radio whatever way round I had treatment because I had multi-focal disease and at least 3 nodes involved.
I don't regret having it done although 18 Months from finishing treatment I can give you more info with the benefit of hindsight. The good things are that although my chemo didn't quite shrink the tumour enough to get away with a lumpectomy i have still got a reasonable breast, if a lot smaller than the other and completely different shape. To symmetrise this would be a simple breast reduction to the other breast rather than a more major reconstruction which might involve implants or removal of flesh from other parts of my body.
However to have any breast conserving surgery you need to have marker coils inserted pre operatively and I also had marker wire inserted the day before surgery, which was similar procedure to the original biopsies I had. So If you don't like having things like that done under local anaesthetic it's something to bear in mind. No markers would be needed for mastectomy. Also one thing they didn't tell me was that If you have chemo first your cancer staging is what they call "clinical staging". This means that it is an estimate only because they can only really know the true extent of your original disease once they do surgery and it is examined under a microscope and looked at to see it's actual (rather than what the scan says) size and spread. This goes for lymph nodes too because they don't always show up on scans so they can never really tell how many are truly involved until they are removed and tested. In my case because I had chemo first which may have wiped out some of the original cancer in the breast tissue and nodes, they can never be sure of the true extent of the original disease. This makes my staging uncertain, it could be stage 2 or 3, they are not sure, and as a result I had more extensive radio. I may have needed this anyway but they gave me neck radio and boosters just to be safe. I don't regret my decision at all, I just need to pluck up the courage for the surgery to the other side!!!!I hope this helps. It is difficult to know what to do. I was 41 at diagnosis, so similar age to you. If you don't understand anything I have said or want to ask more please do, I am happy to talk about anything. Xx
Forties
Member

Re: Invasive Ductal Carcinoma (oestrogen positive)

Hello

I've just been diagnosed with the same as yourself although my cancer is only weakly oestrogen positive.  I've just posted my first thread as I've got to choose my treatment route ie. chemo to shrink the lump and then hopefully a lumpectomy or alternatively mastecomy first and chemo  afterwards and possibly radiotherapy thrown in to boot too.  Were you given a choice of treatment or did they encourage the chemo first route?  I am in my forties with youngish children too.

nursemakeyouwel
Member

Re: Invasive Ductal Carcinoma (oestrogen positive)

The main Side effect I got with the steroids was facial flushing and puffiness. Just be warned about aches and pains and have some decent painkillers at the ready. Mine used to be that I was fine first few days, them on thirds day ashes and pains would start, but painkillers helped. Just take it easy, rest up and look after yourself. You shouldn't feel sick though, I felt so rough on FEC, thata fee aches and pains were nothing. I didn't feel ill at all with docetaxol. Good luck. Let us know how you go. Xxxxxx
Linserella
Member

Re: Invasive Ductal Carcinoma (oestrogen positive)

Thanks SJB and nursemakeyouwel, I've found the January group and they are putting me onto their Facebook page, I'd really like to stay in touch with both of you also by PM if you like. Nurse I was the same on the FEC, very sick the first time with useless Domperidone, asked for Emend (on recommendation) but the postcode lottery meant it wasn't "readily available" in my NHS area (i.e - no!) so got Ondansetron instead which did the job although the nausea / unsettled feeling remained for about 10 days 😝 I'll be very glad to see the back of that one. Still can't quite believe I developed a resistance to Epirubicin. I'm scheduled for my first Docetaxol tomorrow, have had my 8 steroids but with antacids this time don't feel as bad as I thought I would. Thanks for your reassuring words, it's really helpful to hear that. Take care xxx
nursemakeyouwel
Member

Re: Invasive Ductal Carcinoma (oestrogen positive)

I actually found the taxotere easier to cope with as the FEC made me so sick and I just had pain and muscle weakness with taxo. If I gaff to do it all again Iwould rather have taxo. Xxx
SJB
Member

Re: Invasive Ductal Carcinoma (oestrogen positive)

Yes, jump into the January group - they will welcome you with open arms x

 

Meanwhile if you want to continue chatting to either of us, just keep posting here too or private message either of us. You don't have to stick to talking to certain people.

 

Sorry to hear about the problems, but hopefully the taxotere will sort things out. It is a harsher drug, but worth it in the end, I think.

Linserella
Member

Re: Invasive Ductal Carcinoma (oestrogen positive)

Hi nursemakeyouwel and SJB, thanks so much for your messages. It's really encouraging to hear that you both experienced the same thing and that it was the docetaxol which did it, certainly the doc's have every faith that'll be the case with me. Our stories do sound similar. Having seen the Oncologist last week they are now saying the tumour has remained "static" rather than grown - conflicting info! But they agree FEC hasn't worked as well as they'd hoped, apparently I have a resistance to the Epirubicin (the nastiest one of all in my opinion, great! All that for nothing!!) they said it was unusual but not unheard of. I have every faith the docetaxol will do it, I'm just dreading the massive dose of steroid. Blood count tomorrow but as I'm coughing / with cold / wiped out / I'm thinking it may be delayed. I was diagnosed on the 7th Dec but didn't receive first chemo until 6th Jan so I guess I should join the January group?! I've still not made it over to the chemo forum... It's really interesting and reassuring to hear your stories, thank you so much for sharing and I wish you all the best on your journey's xxx
SJB
Member

Re: Invasive Ductal Carcinoma (oestrogen positive)

Hi - very similar story to mine as well. I was diagnosed in December and started FEC-T chemo 11 days after diagnosis, just a week before Christmas.

 

I'm 48, married, with 2 teenage sons.

 

I've just had my second dose of Taxotere this week. I had an ultrasound scan after the FEC, and was told that my 5 cm grade 3 tumour had softened like jelly, although it was still about the same size, but my infected lymph nodes were smaller. I was told at that point that this is fine, and that the taxotere would then shrink the tumour.

 

This is day 4 and I can feel intense pain in my infected breast, so I'm hoping that is the chemo attacking the tumour. 

 

I've got appointment letters dropping onto the mat all the time now. My final dose of taxotere is on Wed 2nd April, but I see my oncologist on Thur 27th March and my breast surgeon on Fri 28th, and I have another ultrasound and mammogram booked for about a week after the chemo finishes. Just waiting on an appointment for a CT scan to take a bigger picture. I have been told I need a full mastectomy and lymph node clearance, then later on, 15 sessions of radio, and tamoxifen, although i don't yet know how long for.

 

They seem to know what they are doing. Fingers crossed, eh.

 

But don't be disheartened by the half-way results. It is the taxotere which shrinks the tumour, not the FEC.

 

Good luck on your journey. If you started chemo in December, feel free to join the December Angels group, which I am in. It isn't too late. There is a group for each month and they are an absolute Godsend. x

nursemakeyouwel
Member

Re: Invasive Ductal Carcinoma (oestrogen positive)

Hi linserella, your story is almost identical to mine. I was diagnosed Feb2012 aged 41 and had fec-t chemo first. I too had scans which showed no change and possible increase in size half way before I switched to docetaxol. However after the 3 docetaxoli had another MRI which showed that the affected node in my Axilla had dramatically reduced and the one in my chest had completely resolved. I went on to have partial mastectomy, 4 weeks of rads about 7 weeks post op and now on tamoxifen.
So fingers crossed the docetaxol will have a good effect for you too, and even though the scan said it hadn't shrunk the tumour, at surgery the surgeon was able to preserve enough breast tissue to leave me with a passable, if much smaller, breast. ( he wants to reduce the other one to match but I can't quite facethat just yet!) so good luck, and remember just because the scans say nothing has changed when they get in there and have a look it may be better than they thought. Xxxxx jo
Linserella
Member

Re: Invasive Ductal Carcinoma (oestrogen positive)

Hi Magical Moon,
Thanks for your reply and for pointing me in the right direction, I'll head to the chemo section. It sounds like it'll be a great help like you say.
All the best with the rest of your cancer journey,
Love Lindsay x
Magical_Moon
Member

Re: Invasive Ductal Carcinoma (oestrogen positive)

Hello Linserella,
I was diagnosed with Invasive Ductal Cancer on 3 October 2013 so am five months along my cancer journey.
Thankfully, didn't need chemo just had lumpectomy/SNB then radiotherapy.
As a newbie to the Forum you will be finding your way around so just wanted to help point you in the right direction.
If you click on the 'Going through Treatment' box on the front page, you will find there is a Chemotherapy section.
You'll find lots of ladies posting about their experiences of Chemo and will find it easy to link up with them. There are also specific Chemo threads where ladies going through treatment during a particular month can share thoughts, concerns, tips etc.
I hope you find the Forum a great help. I certainly did during my active treatment.
All the best with your treatment and good luck with your surgery.
Peace and Positivity,
M x
Linserella
Member

Invasive Ductal Carcinoma (oestrogen positive)

Hi I was diagnosed in December with Invasive Ductal Carcinoma which is oestrogen receptive. I'm 42 with two young children. I am getting chemo first (FEC-T x 6) I'm now halfway through this and scans have shown that the tumour has grown slightly not shrunk, I've been told that this isn't unusual and some women don't respond until the Docetaxol (T) which is the second part of the chemo. Still it's a bit discouraging! I see the oncologist in a week to discuss. I am due to have surgery and radiotherapy once the chemo is complete. I have just found this site and would like to link up with others in the same boat xxx