Chemo before surgery

[Karen C]

Good luck Annie and Skye, please let me know how you get on xxx

[Skye1974]

Hi, I saw my consultant on Thursday and he told me the shocking news that I have grade 3 aggressive BC, negative for both oestrogen and progestorone but HER2 results aren't back yet. He told me to be prepared to be triple negative 😞 so I am seeing the oncologist next Tuesday, plan is to have a CT then start 6 cycles of FEC chemo, with herceptin if I'm HER2 positive. Absolutely bloody terrified but reading all the posts here and in the triple negative warriors FB page give me lots of hope. Xxx

[AnnieA]

Hi, I have been to my consultant today to get my treatment plan. They have decided to try chemo first with me too followed by surgery. I am meeting the oncologist tomorrow to discuss chemo and when it will start xx

[Karen C]

Thanks everyone, it's so hard not too worry isn't? Firstly it's the shock of being told you have cancer then the waiting to find out more. I guess I was hoping to be told it was early and easily treated. Still waiting for treatment to start and just imagine it's getting worse and spreading everyday. Never thought I'd be eager for chemo! Xx

[snazzynanny]

Hi
I am having chemo first too, I have 2 tumours the largest being 2.5cm, grade 2 with cells in 1 lymph node, waiting for Herceptin results. Surgery then Radio, and pills for 5 years. My surgeon said she's doing it this way round to shrink the tumours so fingers crossed will only have to have lumpectomy, as they are ideally situated, the way I see it is get the crappy chemo out of the way first, so then all the other stuff hopefully will be a bit easier. I have an MRI booked for tomorrow but only on the affected area, and chemo assessment on Wednesday, try not to worry too much as your wellbeing is the teams priority and they are obviously doing it for the best reasons.
Sending hugs your way
xxx

[blueash]

Nothing at all as bad as chemo! If you are getting FEC-T they start giving you Herceptin with the T. I had all TCH because I am post menopause AND I take a statin and tablets for high blood pressure so could not have FEC and I started my Herceptin at the same time as the chemo.

The first time you have it you are there for 6 hours in case you have a bad reaction to it. The next time just 2 hours and after that you can leave as soon as they have done it.

They give it to you in  the thigh (alternate thigh with each dose) and if you want to speed things up pay attention to what you are wearing. In nice weather (I started in August) I wear a skirt and no tights so I can just lift it up. In cold weather I wear wide Palazzo style trousers that I can lift up to expose my bare thigh.

If you have to more or less get undressed then they have to give you a room because of your dignity and something or other but if you dress as I have suggested they can pull a curtain or in my case take me to the end of the ward where they keep all their equipment. No dignity issues because I am full clothed the whole time.

It is a depot injection which just means it takes a long time to deliver, 3 to 5 minutes and they time it. Does not hurt at all so don't fret about that. Sometimes you get a bruise but that is because they nick a blood vessel and they cannot see those to avoid them in a fleshy thigh.

[Lou Green]

Thanks Blueash for your help .I am as scared of the injectons as I was the chemo but think the SE won't be any worse - fingers crossed xx

[blueash]

Lou I have had 11 Herceptin injections so far. It can give you aches and pains so I continue to take clarityn hayfever tablets. I was taking those to help me with the G-CSF injections, see here:

http://myangrycancer.blogspot.co.uk/2013/02/claritin-is-worth-its-weight-in-gold.html

I had 23 rads - 15 ordinary and 8 boosts but I don't know if that is because they had to cut my chemo.

[Lou Green]

Thanks Blueash, I have read your post and really relate to your words.

Also my treatment is almost exactly the same as yours.

When did you start Herceptin and how have you been with it?

Also how many rads are you having? I am going to have 15 days and surprised as I expected more.

My ONC explained that studies have shown there is no benefit for having 5/6 weeks of rads compared to 3 weeks.It's equally effective.

It's true what you say - we can't change it, so deal with and bring the trearment on!!

Lou xxxx

[blueash]

My doctors did not recommend them, I found out about them on here from someone that had a low echo scan percentage and then improved it.  I think it was Bibi but anyway they seem to work and my oncologist is a bit of a wag because he said I can take whatever I like including a gin and tonic once in a while if it helps me through my treatment! The only things he has not given me which I asked for was oxygen and diuretics.

On my chemo my blood went too low to continue but I asked for oxygen and he said that my lungs were working just fine the problem was that my blood was not carrying the oxygen because of the state it was in! When my blood improved the oxygen carrying capacity would improve with it. He did give me iron tables and almost gave me blood and platelet transfusions but decided to stop the chemo at that stage.

I had the most horrendous water retention but he wanted to let that disperse by itself because my liver and kidneys had worked so hard with the chemo. If it did not subside he would give me tablets for it but in the end it did go. Took ages but I am finally more or less back to feeling normal. Thanks to the cold cap I looked "normal" very early on and nobody would have known I had had chemo if they did not know me.

The fatigue, bad taste, and watery eyes/bloating have taken about 6 months to resolve - but I am still here xxx

[Karen C]

Thank you again blueash and for telling me your story. This forum is such a wonderful place! It does help me so much to hear. I think because I lost my sister to bc I feel so negative at times. Thank you also for all the information you gave me on the other thread. Do the doctors recommend them? And as for the price to pay, I will gladly pay it a hundred times over. Everyone's so supportive here. Xx

[blueash]

Well I had a sentinel node biopsy and because that was clear they carried on with the surgery. If that had NOT been clear they would have stopped there and then and given me chemo first and I would have had the surgery at a later date. So I had the surgery first, then about 6 weeks later I started with chemo and Herceptin. A month after the chemo I had radiotherapy - well my blood counts went too low to safely continue with chemo so I had 4 lots not 6.  The doctor was OK to stop chemo because I was having Herceptin and radiotherapy.

I had more radiotherapy than anyone else I know but that might be because they stopped my chemo early. I have not seen the doctor to ask him because he prescribed the rads and I have not seen him since! Well I have seen another doctors because one of the oncologists was away and so the patients were shared out between those that were around. Since I was only being checked that I was OK I saw another doctor. I am seeing my regular oncologist at the end of April.

They tend to give chemo first if they think they can shrink the cancer and so give you less surgery. OR they want to check the spread of it. I have made friends with a woman that had triple neg and she had her chemo first to check the spread.

You will be OK because nobody was more freaked out by all of this than me. Once it dawns on you that this is it - you cannot exchange it for a broken leg or something else a bit less daunting you say to yourself "OK bring it on - I will have to get on with it".

Come on here a lot and talk to us about your fears because honestly this site is better than anything else. There is a price you have to pay - that is when you are through to the other side of all of this you come on here and help others who are where you are now xxx

[Karen C]

Thanks blueash, did you have the chemo first? I can't get it out of my mind that they are doing it this way in case it's spread already.

[blueash]

Hello, yes HER2 and Paget's here too.

I was diagnosed in May last year and everything else finished but Herceptin is still on going. I used the cold cap and kept loads of hair. I did not need a masectomy but my nipple had to come off.

You will be OK , you are still a bit  emotionally numb from it all I expect. Anything you want to know just ask xxx

[queenbee]

If my biopsy comes back more invasive cancer then it will be 6 rounds of chemo every 3 weeks to shrink the tumour before a lumpectomy. This is so i can have a lumpectomy with minimal scarring and less loss of breast tissue. I can opt for surgery first but means more breast tissue will have to be taken out meaning my breast will then be smaller in size! This might be the reason in your case. I'd ask your bcn if any concerns x

[Karen C]

Thank you for your replies. Just trying to get my head around it. I will do everything they say, so many questions and feel so scared x

[Anniej]

Hi Karen, it certainly is a shock, isn't it? I'm not exactly the same diagnosis , although I was a 23mm ER+ve, HER-2 -ve ductal carcinoma with 7 lymph nodes showing signs of cancer. Everyone is different, and treatment will be tailored to you. Mine was, and is, the big standard op then chemo then rads route. If it has been reversed then it will be for a very good reason. If you phone your BCN I am sure you can ask this question and discuss your concerns. I was very fraught when I was first diagnosed , but once you are in the system and have a planned pathway you will feel more in control. Hope there is someone on here who is similar and can help. Good luck. X

[Lou Green]

Hi Karen, glad your results day is finally here.

My diaognosis is similar in some ways. I am HER2+ and grade 3 for 3 bits of cancer.

However mine was surgery first - left MX to remove all the crap !!

Chemo now, Herceptin next and 15 days of rads.

It sounds like they have a plan for you so firstly you are being treated - which I took as a huge positive.

Everyones treatment is made to suit them so don't feel too bogged down with it all right now.

One step at a time and now you know what is what you can start to get your head around it all but its not easy.

This is the start of getting rid of this sh.t.

Take care - Lou x

[ann-m]

Hi Karen,

I didn't have your diagnosis, but it certainly isn't the end of the world.

Thankfully, treatment is so much better now with targeted treatment for her2+. 

If you haven't already, do go over & have a look at the 'going through treatment' & 'targeted therapies' & chemo threads, where there will be others on similar treatment plans. 

Hugs

ann x

[Karen C]

Ok so I had my first appointment after getting diagnosed 2 weeks ago. I'm still confused by all the information I was given but I am HER2+, grade 3 with 4cm area and 3 nodes suspected, probably with Pagets disease as my nipple is affected. It sounded bad and I'm not doing too good at the moment. They want to reverse treatment and I will need everything. So chemo first with Herceptin, radiotherapy then surgery. Anyone with a similar diagnosis or treatment plan that can reassure me this is not the end of the world?