Confused

Hi everyone I’m 37 just been diagnosed two weeks ago with grade 3 started of at 3cm now around 5cm going in Tuesday to have lymph nodes removed and starting fect chemotherapy next week. Really scared and confused at this moment been told 6 months of chemotherapy before removing Tumor then radiotherapy. Is this normal procedure as every body saying lump should be removed before treatment should I get a second opinion don’t want to waste any more time. Many thanks db

Hi dizzybird,

Welcome to the BCC discussion forums, you’ve come to the right place for some good support as the many informed users of this site have a wealth of experience and knowledge between them.

For some extra support and a good listening ear the BCC helpline staff are on hand. Calls to the helpline are free, 0808 800 6000 lines open Mon - Fri 9-5 and Sat 9-2.

Take care,
Jo, Facilitator

I believe neo-adjuvant chemo is often the preferred treatment, especialy for larger tumours. It often means that a lump can be reduced in size (by the chemo); you’re then able to have a lumpectomy rather than a mastectomy. :slight_smile:

Thanks for the quick replies making me feel a little better already.

Hi Dizzybird

So sorry you’ve had to join us. xwelcomex is right, for many types of cancer chemo before surgery is now the preferred option.

To set your mind at rest, why not give your breast care nurse (BCN) a call and ask her why they have decided on this for you?

Take care - at least you have treatment plan in place.

Dx

yes that right, with a big tumor if they think its the right type to be reduced by drugs then thats what they do so that its easier to take out. If there are any little cells starting to spread the chemo gets them as well, so its good to get the chemo going as soon as possible. I have read threads where the tumor has gone down to almost nothing.

I hope someone will come along soon that has this experince, but also tomorrow get onto the help line, they are very experiance at all forms of cancer and treatment.

you have doe well to find this site, there will be people having the same treatment as you and you can give it each other support, or there will be people who have been through it an give you advice and tell you of their experinaces

Thank u all I feel better I’m glad I have found this site so nice to talk to people who know what I’m going thought everything has happened so fast

Hiya Dizzybird - I am having chemo to reduce my tumour which started at 10cm , no idea what it is now but feels smaller . It is standard treatment and gives us the best blast of treatment before the op .I think it will be good to know that chemo is over with when i go for my op as chemo can be the hardest part.

keep posting ure queries

Lorna

Hi Dizzybird,

I’m 33 and having chemo first too. This is becoming more common. It can be used to shrink the lump so you can have a lumpectomy rather than a mastectomy. It also means you start treatment sooner (if you were having an op it would have been delayed for at least a month). Your onc will also be able to gauge the success of the chemo by how it affects the tumour - whereas if it’s whipped out first there is no way to tell whether you are reacting well to the chemo or not. And I’m quite pleased as it means that I am having chemo whilst fit and well rather than after recovering from a big op. So far the side effects from chemo have been minimal for me and I’m sure some of that is down to me being fit and healthy before starting. After my surgery (I am having a double mastectomy) I will be having radiotherapy, but hope to be able to try and regain some fitness and do my exercises etc following surgery, rather than then having to cope with the chemo fatigue (we shall see!!).

I’ve met some girls who had very large lumps and by the time they had surgery all of the cancer cells in the tumour and lymph nodes were dead. I really hope that happens for me (and you!) as that must be really reassuring to have proof that the treatment was so successful.

It also means I get to wear some low cut tops over the summer and get used to saying farewell to my boobs!

It did take me a while to get my head around having this gremlin brooding away inside me though. My immediate reaction was “GET IT OUT” but I am glad I didn’t have to delay chemo and really hope I’ve had a good reaction to the chemo when I have my op.

And regarding the chemo - not nearly as scary as you imagine it’ll be.

However, it doesn’t hurt to get a second opinion if it would put your mind at ease, but it depends if you’re happy to delay treatment (even if it’s only be a week or so). I, personally, found the run up to starting treatment to be really overwhelming with loads of scans and tests and appointments and I was suddenly starting chemo (about 10 days after being diagnosed). However, once I started chemo things settled into a routine and I then went and got a second opinion. He clarified that the treatment plan etc was correct for my situation.

Let us know if you have any other questions.

x

Hi Dizzybird (great name!) I’m another one who had chemo first (posh name is neoadjuvant chemo). Although I’m a decade older than you I had grade 3 stage 3 bc and although my lovely doctors never said my tumour grew in the two-three weeks between diagnosis and starting chemo, they did say I had ‘good instincts’ when I said I thought it had.

As others have said, and I experienced, having chemo first is good in some ways. More time to get your head around the thought of surgery and to investigate resoncstructiion options (I had mine done at the same time as the mastecetomy). The oncs can see how well it is working and can change to a different drug/regime if it seems not to be as effective as they’d like (my BCN told me that for neoadjuvants having FEC around 80% switch to Taxotere/Docetaxel - it’s almost ‘normal’ so the FEC-T you are being given is a great regime). Also as has been said it is possible to kill a lot of the cancer before it’s taken out. Overall I had an 80% reduction in tumour size (from 8cmx6cm at start of chemo) and of what remained 80% was scar tissue rather than live cancer - put another way the chemo killed of 96% of the cancer. The effectiveness varies from person to person and according to the exact kind of cancer you have; a few people get a ‘complete pathalogical’ response - i.e. when they test whatever they remove it is all dead.

I hope it goes well for you. We neoadjuvant girls are relatively unusual, even on here but we are around, so feel free to ask any questions.

Hugs.

Good point Revcat! I’m seeing 2 different oncoplastic surgeons next week - so have time to research recon options before my op in October. If I’d had the op at the beginning there would have been no way I would have had time to research any options or different surgeons.

Hi Dizzybird, I was diagnosed today and have been told that as I am young(39) and have a large tumour it is better to start with chemo. Two reasons given: 1. hopefully the tumour will shrink so I will not need a full mastectomy and 2. will show if chemo is working. At the moment I don’t know what stage I have, everything has happened so fast. Went to my GP on Tuesday, got phone call wednesday from breast clinic for appointment thursday! Went in had a mammogram, sat in waiting room for an hour to see consultant, who then sent me straight back to radiology for ultrasound scan, fine needle aspiration and needle core biopsy. Then back to consultant who gave me diagnosis, then breast care nurse chat. Going to GP tomorrow to have blood taken, then back to hospital on Wednesday for test results and to put treatment plan in place. So I will join you in the feeling very confused stakes.

hi poppinpenguin,

yes it is a bit of a rollercoaster isnt it. mind you that is better than having to suffer weeks of anxiety waiting for each of those tests and results.

I am sorry you were not given the all clear, but at least you have found this site. There are lots of usefull threads and everyone is very helpful. do ask questions, or just come on to rant if things get on top of you.

Hi Poppypenguin

Firstly, welcome to the forums, I am sure you will find it a great source of information and support.

I’m sorry to read of your diagnosis, the first few days and weeks are
always difficult when coming to terms with things and getting to grips with your treatment plans, etc.

I’ve given here the link to our Resource Pack for those people newly diagnosed. The pack is filled with information to help you better understand your diagnosis, test results and the various treatments available.

breastcancercare.org.uk/heal … tionId/82/

Also, do give the helpline a ring if you need any further support or information. They’re on 0808 800 6000. Open 9-5 Monday to Friday and 9-2 Saturday.

Best wishes Sam, BCC Facilitator

Hi Dizzybird. My wife was also a chemo first lady. On diagnosis at 40 the triple neg tumour was IIRC 24 mm, but was of a size that surgery would have been mastectomy. She was given the choice of surgery or chemo first and chose chemo as we had a wedding lined up a few weeks later and she had just bought a Karen Millen dress.

Well, we were in the shop and she was trying the dress on and liked it, and was wondering when she would get to wear it when I reminded her of the upcoming wedding!

Anyway back to treatment!

She chose to go with chemo first, She had 4 cycles of EC then 4 TAX (planned up front - no unplanned change!) and at the session to plan surgery the tumour was no longer detectable by touch or mammogram/ultrasound. It was only the fact they had put in a little marker that meant they knew where to operate!

now she is over a year on from diagnosis, treatment has finished and she is doing fine.

Paul.

Thank you for making me feel welcome, at the moment I just feel numb and trying not to cry in front of the children as we haven’t told them yet. I think I will be having 5 courses of chemo before operation in Feb, and they will put a marker in so hopefully the tumour will shrink.

Depending on how old your sprogs are, you might find the BCC publication “Mummy’s Lump” a very good book to read with them. It’s designed with pre-schoolers and early school-age children in mind. You can take a look at the PDF, but when reading with kids probably best to get a hard copy, I’m sure you can order it from the PUblications bit of the site.

You will be astounded at how the kids take it. I found that the questions I anticipated them asking weren’t the questions they wanted to know the answers to. Their concerns will be about what happens TO THEM, more than what happens TO YOU, so will need reassurance that their lives will not be too impacted, though of course mummy won’t be able to do as much for them and they will need to do things for mummy when she’s not feeling well.

hi, yes it is a bit of a bomb shell isnt it. i was so numb that I did not shed a tear, everyone was waiting for me break down. i still have not cried, I think the whole of london will know about it the day I do.

I dont know how young your children are, but kids are realy perceptive and soon pick up that something is wrong. the first thing school age kids think of if you are still with your partner is divorce. Unless they are old enough to understand more you might want to think about telling them you are ill and the doctors have found out what is wrong and have a cure and you have to go to the hospital a lot and it is going to make you tired and weepy.

Small kids seem to think the doctors have the answer to everything and should take it in their stride.

Thanks oldandlumpy and ChoccieMuffin for your comments. DD is 8 next week and DS is 5, we are going to tell them tomorrow using the “Mummy’s Lump” book to help explain about the bad lump in mummy’s boogie. Pretty sure dd already knows something is going on, we have said I am feeling poorly as I had to go for blood tests this morning but she has been unusually quiet today.