Don't need chemo?!

Hi Ruth,

It certainly seems a low percentage difference for such a 'nasty' procedure.

I'm in similar situation as you: Grade 2, 3 lymph nodes removed all clear, oestrogen positive, but following the surgery my tumour was found to be 27mm and lobular (they thought it was 20mm and ductual before the WLE). I was given 39% chance of it coming back unless I had chemo .... so I obviously have taken that route, but I was originally only expecting to have surgery, radiotherapy and then Tamoxifen, so it was a shock. I am quite a bit older (53) so that is probably another factor.

I'm on the Epi-CMF program of chemo and have had 3 so far. It's 'just about' bearable. Not sure I could recommend it though :-)

I hope this helps,

Best wishes,

Shelagh

Hi Ruth

Im same boat as you, diagnosed end last year , grade 3, 2 tumours one 30mm and other smaller. Had lumpectomy and radio and with regard to chemo was told it was basically my choice if I wanted it!! Advice (?) I was given was all negative against the chemo and now I sit and wonder if that was because of the cost..... BC nurse was CRAp and as it all happened so quickly I now feel I was pushed into a situation I hadnt had time to digest.

I was 40 years old, 2 children and a sole parent. Hardest decision I have ever made. Mind chunters all the time thinking what if but I suppose its done now and cant be changed.

Now on tamoxifen and let loose back into the world.

Cant give any advice apart from - do what you "feel" is right for you at this time and for your future. Done let anyone pressure you and if still unsure then take more time - thast what I should have done.

Good luck and let me know how you go

Lesley ;0)

that following my mammo that i now have a 9mm mass, probably a cyst or so my surgeon says in my good breast, i had a grade three 16mm in my left breast that was removed last year, i was never offered chemo, even though i was told from day one that i would have to have chemo, so now i have to wait till next friday to see if i now have a new cancer in my right breast, the irony of it all was that i was quite happy to have chemo, i was never given that option, but i did fight to have my ovaries out (along with everything else), it does make me wonder what size this so called cyst would be if i hadn't taken matters into my own hands, anyway, i will know more next friday, and if it is cancer again then i shall be taking legal action against my pct.
Alisonxxxx

Hi wish you well with your decisions - I always think it is harder for us when we are given the choice to make. I would say follow your gut feeling regarding your options. Only you know what is right for you! I dont know if you know if your lump is oestrogen receptive or not - as that may influence your decision - large amounts of oestrogen circulate the body during pregnancy - if your tumour is oestrogen receptive it could influence the decision of whether it would be wise to get pregnant in the future - however you wouldnt be the first or last Breast Cancer patient to go on to have a baby after treatment?!? I had chemo and continued to menstruate afterwards but not everyone does and it depends on the chemo they give you too - Les is right ASK QUESTIONS and take your time - these decisions are difficult and should be considered carefully - ring the helpline on cancerbackup for advice too - they are very helpful. Best wishes, send me a PM (private message) anytime, Jools x

Hi Ladies

Thanks so much for taking the time to reply and share your experiences. I do have time to make up my mind thankfully - the oncologist is away for 10 days now so am seeing a chemo nurse in the mean time to talk it through again. Sorry to hear your nurse was crap Lesley - I've seen some lovely ones and of course the odd 'brisk' one. I've also booked to see another oncologist for a second opinion. I do hope the advice we're given by the professionals isn't based on cost.

Sounds like you've had a fight on your hands Alison, did you have your ovaries out because of the oestrogen? Interesting what you say about pregnancy Jools, I'd read that pregancy didn't make the cancer more likely to come back but mine is oestrogen positve so it makes total sense that it could.

Thanks again for all your thoughts, best of luck with your treatments and staying healthy!

Ruth

Hi there,I'm Dee by the way.
New the forums.
I too have been diagnosed with a tumor(grade2) 10cm(i think they said)will find out this Wed what they are going to do by the way of treament.
I know it will involve a lumpectomy and lymph nodes will be checked out.

As your younger than me and have had a tuble tie so i'm not worried about been infertile,Also i'm 52yrs of age so that would be a shock!

One thing i did notice is the difference between doctors and The waitng time of tests, Up to now i was refurred to the hopsital June 23 and will just be given my results this week, Was it the same for you? seems a long time...or is that just me?

Hi Dee

That does seem like a long time to wait for results. I waited about 10 days for the results of my lumpectomy and about the same when I had my lymph nodes done. Maybe you should ask them what the hold up is and try and find out the next set of results more quickly. The waiting I found was the worst part. Being pleasant but pushy helps move things along I think!

Best of luck with everything.

Ruth

By the way everyone, has anyone heard of the Onco type DX test? It is apparently for this very problem - early stage grade 2 breast cancer with clear lymph nodes to help decide whether chemo will help you or not. It is reassuringly expensive!

Ruth

Hi again,

Glad you have time to make your decision, and that you are getting a second opinion. I've not heard of Onco type DX - is it a kind of biopsy-type thing, or a scan-type thing?

My oncologist said he put all my details into an online database (adjuvant online I think) that gave him the percentage risk of recurrence based on info of previous similar cases from all over the world. It sounded good at the time, but I'm wondering now :-)

Shelagh x

yes thats what my onc did with me too, and i was grade 3!!!!!!! but he did think i was grade two due to typing errors, one of the reasons that the ovaries had to go Ruth, i felt it was the only course of treatment that i could fight for and successfully win, but friday will tell all for me as to wether i made a perfect sacifice or not. i do not agree with adjuvant online, i feel that it just treats us as a statistic rather than a person, if i do have cancer again in my good remaining breast, then i shall be going down the legal route of answers as to why as a 44 year old woman that i did not recieve chemo.
Alisonxxx

Best of luck for Friday Alison. Everything crossed for you.

My oncologist did the adjuvant thing on me, it does treat you as a statistic which isn't nice but some people like figures as they sound factual - who knows if you're in that 3% that benefits though so it is a bit limited.

Shelagh you were asking about how they do the Onco type DX test, I think they need access to your original cancerous lump. I wonder if they keep them in the labs, I'm not sure. I'm going to look into it though, the more tests the better I think!

Just read your message,I'm new on here and still finding my way around so i hope i'm doing this right lol.
I'm sort of in the same situation as you, I've just has a full mastectomy as they found two tumors (grade 2)But my lymph glans were clear.
My wound still keeps filling up with fliud, it's not painful(yet) they told me that they would leave it to see if it would drain on it's own but it seem to be taking a long time(or is that just me?)it's been three weeks now and i have to return to hospital this Friday to see an oncologist, I was told that i would proberly be given chemo or tamoxafin but still have to wait and see.
My problem is just before i went into hospital i had my third smear and have now recevied my letter to attend hospital for that, But i looked at the side effects of the tablets and they can(maybe) cause cervial cancer so i'll point this out.
One thing i do worry about is letting someone else have my life in there hands and trusting there decicion, don't know about you?

Hi there

Good to hear from you. Great that your lymph nodes are clear, means you're low risk which is fab. Gives you more choices though which is sometimes confusing! I'm having another test before deciding on the chemo or not. My wound did exactly the same thing as yours - I assume it is the one under your arm? I had mine drained once but it filled up again straight away. It did go down after a few weeks so it will go back to normal I promise. Can't believe you are going through the situation with the smear at the same time, it doesn't rain but it pours. Are you worried about the tamoxifen when you talk about side effects? Do discuss it with your oncologist but mine said it was such a well tested drug that the list of side effects is as long as your arm - but they are really rare.

Good luck with everything, do let me know how you get on.

Ruth X

Hi Ruth,
It's been nearly three wks since my operation and finaly the fluid is starting to drain away-I don't have any cuts under my arm at all it's more the chest wall but it does feel numb and again i can also feel that getting better too.
When i was in hospital it was numb all down my right side(chest) and down to my elbow, now it's just the breast area and under my arm so it is getting better, It's an odd feeling.

I start chemo next Friday, So far the only thing which concerns me is putting on weight with the tamoxifin i know my hair(if i loose it)will grow back, I'm only 5ft 3" and a size 10 and already had my varicous veins stripped, Putting on weight my cause problems but i'll just have to wait and see i'll keep you inormed of what happens.

I also mention the smear to the my oncologist but she said it won't be related but i will mention what is obviously going on with the chemo to the cloposcopy clinic reagrding my smear, That's if i make to the hospital as i will have had chemo on the fri and my opointment(colposcopy) is for the Tuesday, I think i'll ring them back and explain things just incase, Don't know which way to turn lol..

Let me know how your getting on and what you choose won't you?

I'm off to do a bit of sunbathin lovely weather isn't it! hmmm don't think so lol..
sunbath with my wellies on lol..

Take care and speak soon.
Dee x

Hi Dee

Sorry for the slow response...my mother died last week. She was diagnosed with pancreatic cancer 7 weeks ago. It has all happened so fast it hasn't quite sunk in yet. I met a lovely friend of my mothers at her funeral though who has survived breast cancer for over 20 years - she was full of encouragement.

How are you getting on? The chemo must have just started, hope you're feeling ok. I've not got the results of my test yet so just going ahead with radiotherapy at the moment. It starts on 1st October. Just had my tattoo dots done on my chest where they measure you up.

I'm also a bit concerned about tamoxifen and weight gain, I think we'll have to see how we get on with it. I'm having acupuncture which I think is great. I've also had a phone consultation with a nutritionist who was recommended to me, there are supplements that can help with various side effects which sound good.

Hope all goes well with the chemo and also the gyne situation, keep in touch.

Ruth

Hi Ruth,
So sorry to hear the sad news about your Mother,You do seem to be going through the mill don't you?
That does seem very quick and it can't of been easy to watch and i know i won't be able to say anything to ease whats happend just know my thoughts are with you and your family at this time.

I have the same concerns about Tamoxifin as you(putting on weight)I spoke to my Mcmillan nurse yesterday about that very thing, She told me that when you go through chemo your taste buds change and you can have an awful taste in your mouth, you can also loose your appetite but when this wears off and start to eat again it's the tamoxifin which makes you hungry-so you eat. oh! she did mention i will be given steroids too but not sure why -will ask tomorrow.
I go to hospital tomorrow just an informal thing-to show me around and chat about chemo really, Then my first chemo is Friday so watch this space.
I keep finding different veiws on chemo and it's very frustrating.
One of my freinds told me that lisa who i know, had chemo and her hair didn't fall out but the nurse said yes your hair will fall out, I also thought it would be easier to try to avoid lots of contact with people due to the risk of infection BUT again my nurse said no, Just carry on as normal just avoid people in your close circle of freinds who do have cold,flu or any infections..hmmm it's sooo confusing.
She also brought my prosthesis
it looks great!
I also told her about a comment my hubby made when we were out which made me angry.
We went to have lunch in a pub at a place called Craster in Northumberland.
My hubby ordered the meal at the bar and as he came back i was looking out of the window, As i turned to talk to him i noticed he was staring at my bust "what" "You should of had your softie, It looks silly your all lop sided" he said, Now unknown to him i had a battle going on in my head anyway as when we went insdie as i realised i had a tight jumper on and felt a little uncomfortable knowing people may notice,BUT! pushed it to one side and took my coat off then he came out with that remark.
I did pull him up later on at home because it was eating away at me and with my period just around the corner +pmt i thought i'd better say.

My nurse was suprised at what he'd said but was pleased i put him straight, I still can't believe he came out with that, built my self asteem up no end.

Anyway, listen to me rabbiting on, Let me know how things are going at your end and thank you for taking the time to reply with everthing that is going on st your end,Take care.
Dee x

Hi Dee
Just a couple of quick responses. Firstly - hair loss! There are masses of different chemotherapy drugs out there. Some cause hair loss, others don't. So it's perfectly possible that your friend didn't lose her hair and that you will lose yours [I'm bald myself at the moment!].
Re infection - the best thing is to try to lead as normal a life as possible, but just be aware that at certain points in the chemo cycle you will be more vulnerable. For example, I have chemo every 3 weeks so between days 10-14 my blood counts are very low and I have to be careful then. Try to not to go to crowded places like supermarkets, and avoid anyone with a heavy cold when you're at risk, but otherwise you'll be fine. And of course, keep washing your hands!!! I'm not sure what the 'at risk' period is with different cycles, but your nurse will be able to tell you when you'll be particularly vulnerable.
Hope that helps
Love
Kate xxx
PS: How insensitive of your husband - I'm glad you put him straight!!

Hi Kate,
Thank you for your reply.

I 've taken on board what you've said as it's nothing that my nurse didn't say yesterday ha ha, Although until i have been to the hospital(which is tomorrow, thur 18th) and spoken to the nurse the about my concerns(as i suffer from asthma when i'm ill) i might just relax.
My nurse also told me if we went away for a weekend break(holy island as my husband is a keen photographer) the hospital will either give me a card or booklet and if i did get ill we would have to go to the nearest hospital and show them this booklet/card, So that makes me feel slighlty better- Silly isn't it, I 'm told i have cancer and two tumors, they cut my breast off-but i worry about a cold infection!

I live near county Durham actually, Where do you live?

I read your profile you seem to be a very busy lady lol all those places you've been to but i was Saddend to learn about the loss of your husband it must be difficult for you at times but it's great to see you do have support in the way of good friends, I also have some very good friends who have been a great support to me.

I'm pleased you'd thought my husband stepped out of line with his comment normaly i just let things go over my head but i thought he was more concered about what people were thinking than about my feelings and i'm glad i did say something and will see if he comments on it again.

I have tried to show him my scar twice but all i get is"i'm not bothered" All i wanted is for him to look at it get it over with so i can feel more relaxed in my own home as i'm 53 this Dec i do have flushes sometimes though the night and don't like wearing a nightdress, all part of going through the change i surpose hot one minute cold the next(oh what joy lol)so i've bought sort of a vest top for bed which is better, i just don't like feeling that there is something wrong with me, I'm still the same person.
Did you have any reaction when you told people of your cancer?

Is it BC that you have Kate?

Anway, nice to hear from you.
Dee

How did you get on at the hospital on Thursday? I do hope the nurse was able to allay your fears. By the way, I too have slight asthma which seems to have been exacerbated by chemo - I just take Symbicort and try not to worry about it too much - so many of these side effects will rectify themselves as soon as we finish chemo.
I know what you mean about the booklet - I feel a lot safer with mine! During my first cycle of chemo I was in Bath with a friend and got an infection in my finger. I rang the cancer ward at my hospital and they told me to get to a doctor as soon as possible, so off I trotted to the Bath walk in centre, showed them my booklet, and was treated immediately. But I understand how we can worry about an infection - apart from not having the immune system to fight it, the last thing we want is more antibiotics and possibly delayed treatment.
I'm living in Berkshire at the mooment, so the other end of the country to you. There seem to be masses of people from the North on What Now; we seem to be more scattered down here (having said that, I'm originally from Lancashire and still count myself a northerner).
As you say, our support is so important - and some of the greatest support and friendship I've experienced has been on this site. As for still being the same person - that's SO important. I try to tell myself that I have disease, but I'm not ill. I suppose I'm quite lucky that no one will see my scar (I have ovarian cancer, so I have a scar from bikini line up to about 3" above my navel ... not a pretty sight!). As for telling my friends - as I'd been in hospital for nearly 4 weeks I didn't have the option of choosing when to say anything, so just tried to be as matter of fact about it as possible. On the whole people have been great, except for my 'best' friend who recently lost her brother to cancer and just can't cope with my being ill. I had to ask her not to call me until she could stop crying, but she's getting better now! And my husband's best friend is a gynaecologist in Egypt and he's finding it difficult, since cancer is virtually an automatic death sentence in Egypt and he can't imagine that I'll come through this. But on the whole, people have been great. On the other hand, without wanting to sound self pitying, this may be because I don't have any 'intimate' family now and it's a lot easier to be supportive if you're one step removed! Anyway, apologies for this long posting but I did want to make sure I'd answered/commented on all your queries! Hope to hear from you soon.
Best, Kate xxx