Newly diagnosed & freaked out!!

Hi everyone,

This is the first time I have posted on this forum. I was diganosed with IDC a week ago - a 12mm grade 3 tumour, ER+, borderline HER positive (awaiting further tests) - and after the initial shock wore off, I began to feel really terrified. I have breast conservation and sentinel node biopsy surgery booked for 9th Sept. I feel very fortunate to have a great team with an excellent nurse but find the waiting really hard. I am also worried about bad pains in my ribs, chest and shoulder - is this common? My nurse tells me that there is nothing to indicate spread of disease but every time I feel a pain I feel a lurch in my stomach and feel sick. How have others comforted themselves through the waiting game? Finding it hard to put a brave face on - but need to for my kids.

Any thoughts welcome!

Thanks,

Jacqui

Hello jacquiD

Welcome to the forums. This must be a very worrying time for you but you have come to the right place for support from our experienced users who I’m sure will be along to support you soon.

You may also like to talk things through with a member of our helpline staff who are there to offer emotional support as well as practical information. The lines are open again on Tuesday morning. The free phone number is 0808 800 600 and the normal opening times are Monday to Friday 9.00 to 5.00 and Saturday 9.00 to 2.00.

With best wishes
June, moderator

Jacqui, first of all I’m sorry you’ve had to join us.

How to keep busy until surgery? Some people go mad on housework (not here, my midden is still a midden), others get stuck into work, others do days out with family, others sit and cry and fall to pieces. Actually, I reckon just about all of us do a teensy bit of the last one…

Your diagnosis seems fairly similar to mine, back in Dec 10. I’m out the other side of WLE (the same surgery you’re booked in for, Wide Local Excision aka Lumpectomy) SNB (Sentinel Node Biopsy - hurrah, I had clear nodes!), chemo, have just finished radiotherapy, and have started a year’s course of Herceptin and 5 years of Tamoxifen.

I won’t say it was easy, but I managed it, with the help and support of the lovely ladies and gents on this site. The only thing I would say about this site is that it can be addictive!

About the pains, I would not be in the least bit surprised if you’ve been holding yourself very tense. On top of that, if you’ve had any biopsies you’re probably feeling a bit sore after them too. So many of us have had exactly the same thing during the wait for surgery, with our worlds turned upside down and SOOO much stress!!!

How old are your kids? Have you told them what’s happening? Even little ones are pretty perceptive and will certainly have realised there’s something up, even if you haven’t told them what. It’s tough on our families just as much as it is on us, but you may find they surprise you with how well they cope.

Best of luck for 9th, and in the meantime there are a few practical things you can do.

Get your prescription exemption certificate sorted out. Your GP’s surgery fills out a form that you sign, and you get free prescriptions for 5 years, not just for cancer-related things.

Book yourself onto a Look Good Feel Better session.

DON’T GOOGLE!!! There are lots of out-of-date and ill-informed sites out there that could scare you half to death. Stick to reputable sites, like this one, Macmillan, Cancer Research, that kind of thing.

Get a notebook for you to write down any questions you might think of. Remember, THERE IS NO SUCH THING AS A SILLY QUESTION. If you’re bothered about it, it’s a valid question. Ask on here, or your BCN, or your surgeon, depending on what sort of question it is.

Do you know if you’re up for chemotherapy yet? When you do find out, there are other things you can do to get yourself ready, but in the meantime keep your fingers crossed that you escape the poisons.

If you’re having problems sleeping and “switching off”, some people on here found it really helpful to get some sleeping pills from their GP. You will know yourself whether that’s something you want to consider.

If you’re employed, you might want to read the EMPLOY charter (think it’s on this site somewhere, I’m sure someone will find a link for you). This explains your rights as an employee - did you know that from now on you’re classed as “disabled” for employment purposes? I have to say that I don’t FEEL disabled but it’s worth being aware of, and make sure your employers are aware of their responsibilities towards you.

Remember that they do not have any right to tell anyone at work if you do not want anyone told.

You might want to also have a look at the post-surgery exercises on here, so you can get used to doing them before your surgery.

Nearly forgot, there are some very good leaflets in the Publications section of this site. Have a browse at the ones relevant to the stage you’re at.

Also get hold of a snug-fitting sports bra with separate cups for after the surgery, and perhaps one of those bra expanders to put in the back in case you need that. My surgeon advised that I wear a sports bra 24/7 for three weeks after surgery, and it was certainly more comfortable than letting everything “hang loose”.

Finally, use the forums as much or as little as you find helpful. There are all sorts of threads, including silly threads where we can have a laugh and a joke together (yeah, I know, sounds a bit odd really, but we DO have a good laugh too!) You might want to select which threads you read though. I remember I also managed to scare myself silly reading the secondaries threads, particularly right at the beginning. Your BCN has said there is nothing to indicate spread, so I suspect that’s based on what they’ve seen when scanning your nodes.

Hope that lot helps, and have a huge cyber-hug from me, you’ll probably get lots more from others on here.

Best of luck for 9th,

CM
x

Hi Jacqui,

You’re where I was a year ago. I was diagnosed on 20th August and had WLE and SNB on Sept 8th 2010. I had similar diagnosis too. 11mm lump, grade 3, slightly ER +ve, but HER2 -ve.

I found it helped to keep busy and tried to do things I enjoyed to take my mind off it. I had chemo and rads (managed to have my appendix removed so delay in the middle of chemo). I found the surgery and rads to be just a relatively small inconvenience. I can’t say chemo is much fun, but it is doable. I am now out the other side and have worked hard at building up my stamina.
My advice is to take each day at a time, rest when you need to, make the most of the good times, accept all offers of help. People do like to help, so if they ask, tell them what would help eg taking children to school, cooked meals, shopping etc.

You will get there.

Good luck. xx

lookgoodfeelbetter.co.uk/site/index.cfm

What Choccie said, plus generally work out as simple a routine as possible for meals etc for when you might not feel like cooking. I have never been so glad of an OH who cooks, most of my girlfriends said they would be faced with a diet of boiled eggs and toast if it was up to their OHs.

If you have a local Cancer Support place offering you relaxation therapies etc, a good idea to go along sooner rather than later (Do as I say not as I did). I often wished at various stages that I had updated relaxation techniques for moments of meltdown/not sleeping etc.
Best of luck, most of it is not as bad as we anticipate.
Lavender
xx

Hi JacquiD

This is a worrying time and the waiting is a difficult part. I would encourage you as well as using these excellent forums to phone the breast care number if you feel you need to talk. I have 3 times over the last few months and each time have found it very helpful. Everything is in complete confidence. You can ask anything you want and spend as much time as you need too talking.

Wishing you all the best
Take care and lots of love
KatyD

The waiting is horrible, it really is.
I kept myself busy by housework and then more housework, the whole place looked like a showhome by the time I got all my results.
I had just finished a temp contract when I had the biopsy etc, so I didn’t have work to go to.
I just kept doing my best to keep it out of my mind, there were some nights where I couldn’t sleep because it would creep in and I’d be imagining my own funeral and who’d be there and what songs I’d want etc, then I’d start crying.

I tried to remind myself that it could all be fine, that even if it is cancer it’s not an automatic death sentencee etc.

And the forums are a great place by the way.

Not going to lie, chemo is not a walk in the park for some people and other people dont have a lot of Side effects. You don’t know til you do it. I think everyone worries like mad about chemo, you never hear of people who have a good time on it.
I had a LOT Of Side effects and was fed up at times, but you know what, I’d still do it again because of the extra added chances it gives me of this B8gger not coming back.

xxx

Hi Everyone,

Thanks so much for taking the time to write back to me and share your experiences - it is such a comfort to hear from others who have been through this awful experience too!

I am glad that I am not the only one having terrible fantasies about my own funeral. Right now I feel like I will go through whatever treatment necessary to preserve my life. I am sure this is dreadful for women with out kids, but for me, it feels even more painful thinking about my daughters and what this all means for them. My girls - 12 and 20 (today!) - both know what is going on - and I am being very optimistic with them about the future. I have a n appointment tomorrow for pre-op stuff, bra fitting etc and my nurse has asked me to bring both girls along so that they can see where mummy is going, talk to the nurse, ask questions etc. I do think that is a good idea - just hope I don’t get really upset.

Thanks also for the brilliant practical advice - very, very helpful. I am going to get a notebook and make a record of all of these excellent tips (keep forgetting everything al the moment!)

I am so grateful for all of your responses - this forum is a lifeline!

All best wishes to all…

Jacqui