Large tumour and terrified

Hi Avril,

I was diagnosed with IDC just over 2years ago. I had surgery first. From Mamo, ultrasound and MRI the medics reckoned my tumour was about 3cm and offered lumpectomy. When the path report came back, the tumour was 4.7cm with 1 positive node. Medics recommended mastectomy.

Imaging only gives an indication of size and from my chats with many women on boards and in real life, the imaging is less than accurate. I know you have had chemo, with a partial response given the regime of poisons they pumped into you, however please remember there are lots of other chemo cocktails that can obliterate tumours.

You don't mention your hormone or her2 status. If you are positive, you will have another arsenal of drugs at your disposal to keep those cells at bay.

I can imagine the news you received on Friday to be disheartening but it does not mean you will reoccur or that it will spread. Surgery is the best way to get rid of the tumour so I am glad to hear mastectomy has been recommended for you.

Where are you being treated. If you have any concerns about your once team, you can always try to get a second opinion.

All the best.

Lindylu

Lindylu,
Thank you so much for getting back to me.I have read your messages on the message board before and they have been great.You are so good about getting back to people.I have been a wreck since Friday.Panicky and weepy,the usual awful feelings that I won't see my only child grow up..Then I feel really guilty about not being a braver soldier.I am naturally anxious and just cannot get my head around this.My husband thinks I am cracking up!
I am ER+ and on tamox

Hi Avril, I can really empathise with you and how you feel so over whelmed by everything. I was diagnosed in July 2010, and having being told the tumour was 2 cm it was 4.7cm after lumpectomy. I also had a lot of nodes involved and had an axillary clearance at the same time, followed by mastectomy a week later. Then chemo and rads.Started Tamoxifen in Dec and wonder if thats affecting my moods aswell. It's now everything has hit me and I sound like you, weepy,worried all the time and can't concentrate and feeling incredibly tired. I also feel there is a lot of pressure to be 'brave'. we have no choice! but it's ok not feel brave or positive all the time. I've joined a support group and it really helps. good luck with your treatment and be kind to yourself.
Macci.
july 2010 lumpectomy + axillary clearance
Mastectomy
DCI + idc stg 3, grd 3
nodes +, x9
tx. ACX4. TX4
rads x 15
Tamoxifen.

Hi Avril,

As others have said, its ok to be weepy and worried. We have all been there (probably several times!) during diagnosis or treatment. I would say VERY often after getting results. Its very difficult doing the waiting for the results firstly and then if the results are not as positive as we'd hoped it can really knock us for six.

You've already been through a lot - your initial diagnosis, then chemo and surgery - so getting news that your tumour was bigger than initially thought and that you'll now need a mastectomy is bound to hit you hard. Hang in there, you faced the shock and trauma of your initial diagnosis and, after time, got your head around it and started treatment, etc. You are reeling now from this shock BUT you will get your head around it too and you will continue on your 'journey' (yes, I know thats a stupid word for it).

Macci said there is a lot of pressure to be brave. I would agree. Particularly in front of friends and family. Thats why I think this forum and other support groups are great - you get to talk to others in the same situation as yourself. I found that was what gave me the greatest comfort; knowing I was not alone, that others felt as I did, that we could share tips, traumas, laughs and everything else this rollercoaster brings. And also meeting others who were further along and who had gone through it all and come out the other side was very reassuring. If you haven't gone to a local support centre for chats and the lovely treatments they offer, I would recommend you give it a try. You only need to talk as much or as little as you want to. But the cameraderie and the treatments (massages and reflexology, etc) are a godsend!

Please come back and let us know how you are doing.
Hugs,

Flo.

Girls,
FH2,Macci and LindyLu,
Thank you so much for your replies.Just not able to get to that positive place! Have to. Met with oncologist yesterday and he more or less said that nobody can predict the future. Tell me something I don't already know!

Avril, if you have not yet sought it, it might be time to get some counselling. I know the Irish cancer society have a great service in ARC in Dublin. Know you are in the west but I am sure there are similar supports. I had two sessions with a social worker in Beaumont where I just chatted and cried. It was SO helpful.

LL

LindyLu,
Thank you so much! Have attended a counsellor and found it great.
However over the past few days I do not know what is happening to me. Have become completely obsessed with tumour size and lymph nodes! Spending too much time on internet checking stats. for prognosis/chances of recurrence etc..Just cannot think positive at all.Driving my husband and sister crazy.
Avril

Diag. Sept.2010 Aged 45
Invasive lobular cancer.ER+
Chemo -ACT
Lumpectomy,2 nodes Positive
Tumour 4.6cm.
Tamoxifen Jan.2011
Advised to have mastectomy Feb.2011

Hi Avril,

Don't be too hard on yourself, allow yourself the time to get through all this however you can. Things WILL start to feel more positive. I really believe that talking through it all in counselling and/or on this forum will help. So keep talking!

Family and friends are great but they cannot understand exactly how you feel if they haven't been through it themselves. And I suppose they are worried too and they find it very hard to hear us voicing negative thoughts or worries.

Hugs,

Flo.

i had idc in 2009 and am now flying it, the tumour encompassed most of my breast, one lump measuring 10cm x 5cm and the other was small enough, i had only an A cup, it turned out to be one large tumour over 8.5 cm that had grown along the chest wall, clear margins not measurable to chest wall, the rest was just califications, debris etc from the tumour, it was a very aggressive basal like treble negative cancer grade 3. But the good news is two years out almost and still cancer free and risk begins to reduce now. i did chemo, rads and avastin trial. my nodes showed positive on scans but were negative. if we look at the stats even overall the odds are in our favour, the surgeon told me i had 50/50 of making it and i took that as i had as good a chance as the next person.

you have to give yourself credit for what you have already done and been through.

take care.

Girls,
Thank you all SO MUCH for taking the time to reply to me. Do not know what happened.
Gloom and doom set in with a vengenance.Spoke to a doctor yesterday about my fears and he asked me"How do you want your daughter to remember you?".I was so upset but today saw my own GP and the attitude was much more positive.Although very easy going I always was a worrier and just have to get more positive. Flo, you are so right. I think only people who have been through what we have been through truly understand.Girls, have a date for mastectomy and reconstruction next week.
Wishing you all the very best.

Avril.

P.S. Have gone mad eating fruit and veg and cutting out the wine much to my husband's and sister's amusement! There are 15 oranges in the fruit basket!!!!!

Diag. Sept.2010 Aged 45
Invasive lobular cancer.ER+
Chemo -ACT
Lumpectomy,2 nodes Positive
Tumour 4.6cm.
Tamoxifen Jan.2011
Advised to have mastectomy Feb.2011