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Newly diagnosed and terrified

18 REPLIES 18
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Re: Newly diagnosed and terrified

Hi Linda

So glad to hear that your CT scan results came back clear.
Good luck for Wednesday xxxx

Maryx

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Re: Newly diagnosed and terrified

Hi Linda

I had my treatment in Glasgow too.

I had a lumpectomy and full node clearance and went on to Spain 2 weeks after surgery, like you i had it all booked before hand.
I was told i was to have chemo and rads, i asked my surgeon and BC nurse if i should go, they both told me to go as it would help take my mind off things for a bit while waiting for my treatment,although i was advised to take antibiotics with me in case i got a bite or a scratch on my surgery arm.

So if you are feeling up to it and your surgical team are happy for you to go then you go girl and have a..... BLOODY GOOD TIME .

I hope that all goes well.

Lots of love
Mary xxxx

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Re: Newly diagnosed and terrified

Just to say good luck next wednesday, good news on the bone scan results,
Let us know how it goes.
Ann xx,

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Re: Newly diagnosed and terrified

Thanks everyone....I'll just keep hoping I can go on holiday....I think I need it.....I at least got some good news yesterday....my bone scan was clear....not had the results of the CT scan I had last week though....but I'm thinking no news is good news on that.....still dreading the surgery next Wednesday....but I feel a lot more positive now....and I've stopped crying.....thankyou for the warm welcome....

PS Hi Ann...not far away at all....I'm in Airth x

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Re: Newly diagnosed and terrified

Hi Linda,
I would go along with consultant and wait and see, because I had holiday booked for 6 weeks after op and unfortunately had to cancel it. I had full right side lymph clearence in April, but developed a huge seroma which kept filling with lymph fluid , I had it drained twice a week then got infection ( which is why they dont like draining but it was huge so said they had to) so I had to have another op 17th May. I had good movement in my arm afterwards and am swimming and go to pilates etc again now. I had an earlier prob with my good arm on the left, during chemo which I had before surgery, I developed lymphoedema in that arm, I wore a sleeve continuously and did exercises,and it seems fine now, but I was told by lymphoedema nurse that any one who has lymph nodes removed should wear a sleeve on their arm when flying, so on a recent holiday I had to wear one on both arms Lovely!!!. At least I had no swelling, apparently research is showing that the pressure in plane can sometimes be a trigger to cause a prob.
Sorry to sound abit bleak but I always rather know before hand what could happen, I did not have a clue that I would not be ok by then, breast nurse said some people take 6 weeks to heal so thought it would be fine. I was sad to have to cancel my short break and so I had to pack for hospital instead of packing for my hols. Bit of a difference.
www.lymphoedema.org is good for info, they suggest wearing sleeve too for flying.

Hope your op goes ok and you dont have any problems
Take care
Dawn x

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Re: Newly diagnosed and terrified

Hi Linda
Wanted to say hello and hope your tests went ok
I live just down the road from you in Grangemouth
I recently was diagnosed with clear cell carcinoma in right kidney, also had ductal carcinoma left
breast 3 years ago. Two separate primaries so different fom yourself, alas know nothing
about clear cell in the breast.
Im sure someone will have info for you and all the support you need can be found here on this site.
Keep us posted, all the best
Ann xx

Re: Newly diagnosed and terrified

Hi again,

I went on holiday 11 weeks after my lymph clearance and mastectomy to Lanzarote, no probs, Secret is on the flight move around as much as possible, i know it is hard in a cramped plane but i had extra legroom seats so it was a bit easier, move the affected arm around as much as possible, do the exercises on the plane too, i know i looked a complete prat but with the altitude you need to keep everything going, also to help prevent DVT (I wear flight socks) but then always did even before BC. Who cares how you look, you are never going to meet any of these people ever again so look after yourself and dont give a stuff what anyone thinks! I do hope you enjoy your holiday, i think it will be just what you need. You may find yourself a bit tireder than usual but what better place to relax and chill out than on holiday, just go at your own pace.

Best of luck
Suzzanne

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Re: Newly diagnosed and terrified

Hi Scotsmomma I am just 41/2 weeks after a full lymph node clearance after a SNB 3 weeks earlier and i would be fine to go on holiday. Sure i was sore for about 3 weeks and experienced some cording which was worrying, were the vessels in your arm harden and is restrictive and painful but that has eased a lot now. My advice would be to go on holiday and enjoy yourself as you may have a long road ahead and a holiday would help give you a boost!! Good luck!!
jellybabes x

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Re: Newly diagnosed and terrified

I was diagnosed with glycogen rich clear cell carcinoma of the breast nearly five years ago, if this is what you have got they now think it is very similar to ductal cancer of the breast with the same prognosis taking account of size, stage and grade of tumour

Mole

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Re: Newly diagnosed and terrified

Scotsmomma
I completely understand your holiday concerns - for me it's always ALL about my holidays! In fact we went on a cruise to celebrate my all clear. I really hope you'll be OK to go - it sounds likely because it will give you a focus now as well as some wonderful memories AND a vital bit of sun!

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Re: Newly diagnosed and terrified

Thanks Jane...yes it's the full clearance I'm having....I suppose I should get on with doing my ironing and packing now for my holiday...just in case I can still go...everyone is so friendly and helpful on here.....it helps to know people understand x

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Re: Newly diagnosed and terrified

Hi Scotsmomma
Welcome to the site - sorry you've had to join us.
Are you having a full node clearance? I ask because I haven't - i had only 10 nodes removed on 25th Sept but i am typing away with both hands! Sure, i can't do the hovvering or ironing yet (HOW disappointing........) but i can move it almost normally now (echo what Suzzanne says re not carrying anything on it). I have been doing the physio that was recommended and i feel that that has really helped my progression back to using it as normally as possible. However, i do appreciate that i haven't had a full clearence so i may not be the best person to listen to. All the very best with your treatment - keep us informed on your progress.
Take care
Jane

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Re: Newly diagnosed and terrified

Thanks everyone.....and for the links Lucy.....I'll give them a call.....

I know this will sound stupid....but I'm also really worried about my long awaited holiday to Florida...I'm due to go on 30th November 4 weeks after my lymph node surgery....for 16 nights....my consultant said not to cancel it just now and to wait till after my lymph node clearance to see what to do...can I ask anyone who's had a clearance done.....how well did they feel 4 weeks after surgery? I realise everyone's different....but I'd hate to go on holiday if I was going to feel rough.....but then I'd hate to not go too......sorry if that all sounds very trivial on here

Re: Newly diagnosed and terrified

Hi Linda

Just because you have a rare type of cancer doesnt mean it is more aggressive or more difficult to treat than well known ones, so don't let that scare you too much. There will be someone, somewhere who has treated this type of cancer before and it is fairly common in other parts of the body, so I would imagine your consultant will be in touch with all the experts about treatment. It is bad enough being diagnosed with cancer and then having a type that no-one seems to know much about much be dreadful. It is early on and in a few weeks, you will be an expert in clear cell breast cancer, believe me.

As Lucy says, its a good idea to ring the helplines as they have access to a lot of information, not just this one, but www.cancerbackup.org.uk and www.cancerresearchuk.org

Best of luck

Cathy
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Re: Newly diagnosed and terrified

Hi Scottsmama

I do not know about the clear cell breast cancer as that is a new one to me but i have had all my lymph nodes removed at time of mastectomy. I can tell you that i used the arm normally from as soon as i came round from anaesthetic (I didn't know otherwise) and apart from having to be careful about siting IV's and not having blood pressure taken from the affected arm, plus being careful with it, no insect bites, sunburn etc., I use the arm quite normally. I did develop lymphodema around my mastectomy site and under my arm but that is being treated and so far thank God it has not spread down my arm. I think you just have to think more and not carry heavy shopping on that arm. Much to the amusement of my friends i bought a shopping trolly from Rosler, very trendy, well it was advertised on GMTV, and now do not carry anything at all on either arms.

Hope that helps with the lymph node clearance bit

Best wishes to you
Suzzanne

Re: Newly diagnosed and terrified

Hi Scotsmamma and welcome to the forums,

I would suggest that you may find it helpful to call our breast cancer specialist helpline nurses for further information about your diagnosis, the line is open today from 9am-2pm and Monday to Friday 9am - 5pm.

You will find information about lymph node surgery in the BCC booklet 'Treating breast cancer' page 16/17 which you can access via the following link:

http://www.breastcancercare.org.uk/docs/bcc08_treating_final2_0.pdf

You may also find BCC's resource pack helpful, it has been designed for those newly diagnosed. If you would like a copy just follow the link below to order a copy:

http://www.breastcancercare.org.uk//content.php?page_id=7514

I hope you find this helpful.
Best wishes
Lucy

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Re: Newly diagnosed and terrified

Hi Misha.....I'm in Falkirk in Central Scotland....the only thing I've been told so far is that I've to have the scans next week.....get the lymph nodes removed at the end of this month... then start radio in Glasgow....I know there are a lot of success stories with breast cancer...I just wish I could find out something about clear cell....my Macmillan nurse is trying to find some info for me....I'm in a real panic about getting my lymph nodes removed......ty for your fast reply x

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Re: Newly diagnosed and terrified

Hi Scotsmomma,

Sorry you have had to join us. What has happened to you so far? Have you been given treatment options yet? Which part of the country are you in?

You can expect lots of support from this site, whatever stage of this horrible disease you are at.

Best Wishes
Misha

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Newly diagnosed and terrified

Hi....my name's Linda and on Tuesday I was told I have breast cancer...clear cell breast cancer ....it's seemingly very rare and my consultant has never came across it before...that's scaring me even more....I'm in total shock as I had a needle biopsy and mammogram way back in July and the results were ok....was told it was just a large cyst....I had this cyst removed 2 week ago and I thought that was the end of story...but on Tuesday I got the news everyone dreads...that it was actually a malignant tumour...I go for a CAT scan and bone scan on Tuesday 14th October...I'm being sent for that as sometimes clear cell can start in the kidneys....on the 29th I go to get a clearance of my lymph nodes....really worried about that....my 25 sessions of radiotherapy will start in December....hopefully after I return from a holiday in Florida.....

I realise so many of you are going or have gone through the same kind of thing...and I hope I can get some much needed support on here.....I've cried since Tuesday....and I know I need to get my positive head on now to get through all this.........sorry if I'm rambling

Linda.....

PS.....Has anyone on here ever been diagnosed with clear cell breast cancer....or does anyone know anything about it.....ty