Newly diagnosed

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My story is long, but here is the short and painless version. On 7/15/09 I was diagnosed with Stage 1 invasive ductal carcinoma. My tumor was 1.2cm.

I am currently in limbo and haven’t started any treatments. My onc wanted to redo my her2 test using the fish method, and wants the oncotype dx performed. Until those comeback, I won’t know if I will have to do chemo or just radiation and tamoxifen.

I am determined to remain positive and a cheerleader to any and all that need one so, let’s be buddies!

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back to the top pls,

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just to let you know i totally agree with the positve attitude you seem to have. I was dx in April had WLE may and started chemo in july. Will be having radio and hormone therapy in the new year. I have my down days but cant help feeling optimistic and mostly upbeat - i’m sure it must annoy people, but its the way i cope with major traumas in my life. Small things on the other hand like losing my keys…i turn into a raving lunatic!
:slight_smile:

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@Pixielox ~ I agree. That is how I have always dealt with things, in a positive manner. However, this waiting thing is very annoying. What is chemo like? Did you have to get a port? How long will you be doing it? I have so many questions, but no one (not my doctors) are able to answer me (for now).

Keep your chin up and don’t loose those keys!

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I forgot to mention that I’m only 37, married, with 4 kids (16,13,12;10). Although, on ocassion I have 6 kids. My other 2 travel and sometimes they come home. Their names are “I don’t know” and “It wasn’t me!” :slight_smile:

Can annyone shed some light on the oncotype dx for me? I’m waiting for my results, but am starting to think that I should just start the chemo.

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Morning oh sexy1…

Your diagnosis is indentical to mine! Grade, size etc…I was diagnosed just before Xmas 08 (fab eh!) and had the lump and surrounding tissue out early Jan and 6 nodes. One turned out to be dodgy so back in they went and whipped out the rest.

I have completed 6 lots of TAC chemo without too much fuss. No sickness or anything nasty really, but I was lucky and the attitude of ‘bring it on’ really helps! Have now had 4 zaps of radio and thats ok too. Tamoxifen hasn’t given me any side effects, neither has the Zolodex implant.

I have just turned 40, 2 kids, 18 and 15 who have coped really well, although it has helped them by seeing me get on with things and not take to my bed too often.

Fingers x you will get some info from the Dr’s soon, waiting really is the worst bit. Chemo etc is do-able, not nice but you can get through it. I was going to concerts, meals, shows whilst on it, you just have to make sure your good days are as normal as can be.

Anyway, anything you want to know, email or PM me, I don’t mind.

Love and hugs…Daisy xxxxxxxx

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Howdy Daisy999!

I have lots of questions. You are right waiting is the worst! Since, I am waiting I can’t help, but wonder if I should have forgone the test and just went on with the chemo. There are just so many unknowns. I am glad that you were able to do “normal” things while going thru chemo.

My onc did tell me that chemo is not as bad as it used to be and that is a relief. Although, the other night I dreamed I went to CVS pharmacy and purchased some Almay eyeline, so I could “draw” my eyebrows back. I don’t know if that is a premonition or my mind playing tricks on me. How long is 6 rounds of chemo? Did your hair come out? How soon does it do that?

As far as radiation goes, I already know that I will have 6 weeks of that, but am not sure when I will start the Tamoxifen or for how long. I do plan on trying to exercise some as I go thru this. I have heard and been told that it may help with the fatigue. How have you handled that?

Many, many thanks!

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yoo-hoo…here we go…

Hair loss - that started about 10 days after chemo no 1, a few strands at first, then within days I could pull out more, a bit like a dog when it moults. So, got hubby to cut hair off, and my son gave me a very uneven no2 with the clippers. Losing the hair was not half as traumatic as I thought. In fact, I love my little peanut head. I can’t eat a packet of Revels now and eat the peanut one without thinking of my bonce! An itchy head is a sign of things going on in the follicle dept! Itched when it was coming out, and is itching like mad now! At least I know it’s not nits!

Chemo finished July 10th and I now have what can only be described as bum-fluff on my head. Fine, thin and sparse, very like a newborn, but my head gets darker everyday as the hair is pushing it’s way up.

Chemo - brings with it different problems for different people. One thing is does bring for all is constipation! Get ready for rabbit pellet poos. Lots of good stuff on the market, when the time comes, let me know and I will tell you what I used. For me, no tastebuds and steroid face was a pain, as mine went really red. I looked like moonpig.com. Hubby called them Rosie & Jim. I went to concerts in London on chemo, meals etc and carried on as normal as best I could.

6 rounds means a visit to the chemo unit once every 21 days to be poisoned, six times. So my chemo was 27.03, then 21 days later on 17.04…etc

The tiredness is a pain,just go to bed! Get some books, put the TV on, nice glass of ice cold water, hop into bed and zzzzzz away, and only get up if you feel like it! Stock up on some DVD’s for the younger child, so at least he/she is entertained while you lie down.

Nothing makes the waiting go any quicker. You have a variety of tests (bone scans/organ scans) and the wait is awful, but bugger all you can do about it!

I started Tamoxifen exactly 3 weeks after my last chemo and had the Zoladex implant on the 2 day of RADS.

Keep the questions coming, and let me know what the test results are.

Chin up chucky…Daisy xxx

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hi there,
i assume that if you have to wait for the HER2 test they are not sure yet whether or not you are her2 positive. If you are i think you have to have chemo before herceptin and this may decide what type of chemo regime you are offered.
It does seem that they really take their time, and all the while you just want to get on with it. I had to wait 4 weeks after my surgery for my results but then started the chemo the following week (just when i was hoping for a bit of a break to get a holiday in!) Managed a few days in brighton with my sis to get my head round it!
Since then everything is going really fast. I’m on 4 cycles epirubicin (every 21 days) then 4 cycles of CMF 2 weeks on (three weeks off) about 6 months in total. I have had a good run of it so far - some problems with my viens but nothing major and its just administered directly into the vien - takes about 45 mins. Hair has gone as you can see from the pic - thats my dreadlocks i’m holding up, not a dead ferret!! I tried the cold-cap but it didnt work, as my hair started falling out around day 14.
I have been exercising as much as possible throughout but the 10 mile walk i did after my first chemo was pushing it a bit far!! Prior to this i used to cycle on average 10 miles a day and go kickboxing 1-2 week. Now if i manage a cycle or walk round the local lake (about 3 miles) once a week, i’m well chuffed with myself!!
get an appointment to speak to your BC nurse with your concerns - they ahould be able to shed some light - though i do find that they tell you the worst possible scenarios!
Like Daisy - ive been lucky - was out partying this weekend until 6am (just made sure i drunk plenty of water as well as cider - as i got really dehydrated and ended up with an infection the last time i did it!). Same ethos really though - on the days you feel good - get out there and be normal, on the crappy days sleep as much as possible!
Everyone reacts differently i suppose but trying to stay as ‘normal’ as poss is half the battle done!
xx

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Ok, ladies!

I am back. I FINALLY have all of my test results. I was waiting for my Oncotype DX to determine my treatment. Well, in the mean time of waiting my brain was providing me with all kind of scenarios. However, none of them mattered up until my oldest (Daryn [16]) came in my room at o dark 30 crying. He had a dream that I was crying and then just before I died he crabbed onto me.

Needless, to say I couldn’t do much of anything, but hold onto my 5’11 baby as he trembled, cried, and begged me not to leave him. At that point in time I decided on a secret number. If my test came back at that number or above I would ask for chemo, because I promised my baby that I would do everything I can to not only fight, but kick cancer’s butt.

So, on 8/26/09 my onc says my her2 is still negative, but my score was 20. My husband looked over at me and asked what my secret number was. It was 13! So, now my journey begins.

I will be having a port put in on Sept. 3rd. I will have 16 rounds of chemo and then 6 weeks of radiation plus some form of hormone therapy. Also, I learned that I qualify for a clinical trial, so I have signed up for that too. I don’t want to just beat this for myself and my family, but for all of us and those that will come after.

Daisy & Pixie my first 4 chemo sets will be two weeks apart, and then the last 12 will be once a week for 12 weeks. My onc says that my hair will probably start falling out by the 2nd treatment. I think I am ready. I had a dream that I was at CVS pharmacy buying some Almay eyeliner so I could “draw” my eyebrows back.

My sister says I should get a red/auburn wig, since I already have a blonde one from a 70’s party I went to.

Well, I am at work right now and need to dash. Just wanted to keep you guys updated. BTW- I live across the pond in the States. Warner Robins, GA to be exact and reading your post made me feel welcome and a kinship. Heck, I talk about you guys like you are my BFF’s.

Many thanks, and keep smiling!

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hey sexymomma

your chemo regime sounds really tough… 16 is loads the most anybody gets here is usually 8. i am having the same kind as pixie and have just had my last epi and start cmf next month only i will have it every 21 days the same as the epi rather than day 1 and 8 then 3 weeks off… my veins are damaged in both arms from the epi so its great that your getting a portacath inserted it should make it much easier.

i had a tumour 3 years ago it was grade 1 stage 1 1.3cm hormone sensitive her neg but wasnt offered chemo as my risk of recurrence was so low but had rads and tamoxifen following surgery

however i developed a new tumour this year it was a grade 3 stage 1 1.9cm and was hormone and her neg so only available treatment… had same kind of surgery wle and snb then having 6 months of chemo then 5 weeks rads then to restart the tamoxifen if i want to.

i was so sad read about your son.

when i had bc the first time i was 37 and my kids were 15 and 11 and they were both really upset mydaughter had written a note granny had breast cancer, mummy had breast cancer, will i gte breast cancer… it made me so sad to read.

my son came through and gave me hugs when i was sad and said not to cry which was hard.

love and hugs

Lulu

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hello sexymomma,
its interesting to find out how treatment differs in the US. My breastcare nurse mentioned to me at the start not to look at american websites as they are at least 5 yrs ahead of us in terms of cancer treatment. Do you know what kind of hormone treatment you will be on? I’m ER/PR+ too so will also be on hormone treatment though i’ve not asked what yet.
My son is only 11 but his attitude has been really positive and he’s an amazingly strong little boy - sons can really suprise you sometimes!
I have a fab blue wig…i tried a normal brown bob, but it just wasn’t me! Wore the blue wig out on friday nite and got some fab comments - think i might get a platinum blonde one next…am actually having lots of fun wig shopping on ebay!
Good luck with the chemo.
xx

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Hi there Ladies

I have been recently diagnosed with breast cancer, I don’t know the grading or anything like that as of yet.

I have a question I would like to ask you Ladies, when did your periods stop? did they stop before any treatment started or when your started chemo?

I had a spring put in last thursday (27.08.09) morning and my period was due on Friday 28.08.09, could this have something to do with it or could it be the lump that has prevented my period coming?

I thank you in advance for any responces.

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Hi Cashier,

Welcome to the BCC discussion forums, where I’m sure you’ll get lots of support from the other users of this site.

Please do also remember that the Breast Cancer Care Helpline offers support and information. Calls to the Helpline are free, lines are usually open Mon – Fri 9am to 5pm and Sat 9am to 2pm, although due to the bank holiday they will now reopen on Tuesday 1st September at 9am.

Kind regards,
Kate, BCC Facilitator

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i imagine like everything else with this disease it varies from person to person. I’m 35 and pre-menopausal, still having very light and erratic periods and i’m almost 1/2 way through my chemo. I’m usually like clockwork! I’m afraid i dont know what a spring is so don’t know how relevant this is.
It may just be to do with the stress of all this that your periods have changed perhaps?
good luck with the rest of your treatment.
xx

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my periods were stopped as i have a mirena coil in… but since starting the chemo they have come back although they are very erratic with prolonged bleeding.

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Howdy Team!

Today, I think is the first of many “off” days for me. I had to go back and give more blood, because the lab lost my originals. Then the tech couldn’t get the blood out of my arm and had to go in the back of my hand. So, now my right arm hurts and my left hand does too.

Tomorrow, I am having a port put in, which will negate them having to make me look like a pin cushion. It is becoming more and more real to me. Three months ago I had a clean bill of health. Now, in 15 days I will be starting chemo. I want to remain positive, but for some reason today it is a wee bit more difficult than before.

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Hi Cashier and welcome!

I think that is an excellent question. However, I haven’t started my chemo yet, and my cycle is going like clockwork. I am interested to see if that will change for me or not.

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Howdy Pixie!

I’m looking over my treatment plan now, but I think it is just for chemo as I don’t see anything on here regarding my hormone treatment. I think I am going to be on Tamoxifen, but I am not 100% sure, because I have signed up to be in a clinical trial. Hopefully, I will find out soon and then we can compare notes on that too.

My oldest seems to be doing better, but I have noticed that he checks in on me a little bit more which I think is sweet. My other 3 don’t seem to be bothered too much, but I think that is because I don’t look sick nor have I stopped being Mommie. I am hoping that the transition is smooth for them, but I guess I will have to wait and see. Gee, I seem to be waiting a lot lately ~ ugh.

I will be looking at wigs on ebay too. I already started looking at scarves. I had a dream about those too. :slight_smile: Would love to see pix of you in your blue one.

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Hola Lulu!

I was surprised to learn that I would be having 16 rounds of chemo too! Most I had read about having was 8 and that was once every 21 days. I told my husband that when I do something I go ALL OUT, lol. Since, mine is for 16 weeks and the schedule starts out at once every 2 weeks and then once a week, I thought perhaps something else was either really wrong or they were going to throw the kitchen sink, the baby and the bath water at it. I believe it is the later and while my brain is bringing up all of these scenarios of me being sick and looking like a waif. I constantly remind myself that it is only for a little while. Sometimes that helps and at other times…

I am sorry you developed a new tumor. I worry/wonder if that will happen with me also, but then I look at the treatment schedule I have and I think “it better not!” I don’t understand how with all the test that they do how you could have a new one and it be at a higher grade than your first! Are you going to do the tamoxifen?

How is your daughter dealing now? I started a book in which I am keeping all of my labs and treatment schedules in. At first I thought I was doing it for my daughter, but I realized that I wanted to maintain my own medical records for myself and my kids and theirs too.

Still smiling and still,
1sexymomma

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Hi my periods where always regular,once i had my first round of chemo on 29th april this year they changed i was on for 6 days off 6 days this went on until then stopped on 1st june nothing until a fortnight ago then started but very light for a week,have had a week off and started again yesterday.I dont know if they will come back regularly as my oncologist said it can take about a year.Im 45 so it may have brought on the menapause early but have had no other symptoms so suggest that. julie x

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Hi everyone

Thank you all for the lovely welcome to the site and for all the advice and your knowledge.

I going to see the plastice surgeons on monday and my consultant so i shall mention it to them then, I will let you know what they say, I have a feeling I may be starting the menopause (I am 43 in October) but who knows.

Thanks again ladies

Cashier

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hi sexymomma

i may go back on the tamoxifen but not for the most recent tumour as it was hormone negative and doesnt respond to tamox but as i was only on it 3 years can go back on it for another 2 years for the first one… not made my mind up completely but will probably just take it again.

my daughter gets very wrapped in her own world rather than with whats going on with me… think its probably just a teenage thing… some time she can be quite thoughtful but mostly its all about her… she was more concernd the first time but this time i think oh mum got through it before so it will be fine.

grade 3 tumours are faster growing than grade 1s so the grade 1 tumour was probably there for a number of years where as the grade 3 was probably only there a number of months… and no apparent sign of it on the previous years mammogram so i guess they can grown fairly quickly if they are aggressive tumours.

anyway i wish you loads of luck with that gruelling chemo schedule they have given you.

cashier good luck with your PS appt on monday.

love and hugs
Lulu xx