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Diagnosed with rare cancer - Adenoid cystic carcinoma (ACC) - advice wanted please

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Re: Diagnosed with rare cancer - Adenoid cystic carcinoma (ACC) - advice wanted please

Hi - Thank you, and I'm glad to hear your cording did heal eventually! I do think mine is beginning to ease at last, because I can no longer feel the cord in my armpit, only in my forearm now, which is good. It's also a lot less painful, and the exercises are becoming easier the more I can straighten my arm!

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Re: Diagnosed with rare cancer - Adenoid cystic carcinoma (ACC) - advice wanted please

Hi Lyn100

It sounds like you got on well at the planning meeting, though it sounds like a complicated business! Thanks so much for those details about what's involved - it's good to know and very helpful, whenever I get on to mine. Is this the 'fast' radiotherapy then, as it's for the five days? That sounds so much better than going every day for three weeks or so! I hope you get on well with it - the deep breathing thing sounds like a good plan to protect your heart. I'm glad you don't have to have chemo - everything I've read about ACC seems to say chemo isn't of any benefit.

I had my results and unfortunately they still haven't got clear margins, and it seems like there was a fair bit of cancer noted going further into my breast. Because of that, I've now got to have a mastectomy next week. Not looking forward to that, but if that's what it takes... The consultant told me my cancer is locally invasive, and the report also says it has solid and high-grade features, so seems like it might be more aggressive than I'd hoped.

Good luck next week with the radiotherapy!

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Re: Diagnosed with rare cancer - Adenoid cystic carcinoma (ACC) - advice wanted please

Hello.  So sorry you are going through this.  The cording should get better.  Massaging and doing the exercises will help.  I had it too after my lumpectomy and SNB.  It took time, but it did heal.  😀

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Re: Diagnosed with rare cancer - Adenoid cystic carcinoma (ACC) - advice wanted please

I hope you're recovering well from your second surgery.

I saw the Oncologist last Monday who gave me some information on ACC.  He felt chemo wasn't a good option (which I was very relieved to hear!) but radiotherapy was worth doing, to reduce the risk of recurrence.  He did explain the risks and said there was no way of avoiding the radiotherapy catching some of my lung.  He thought it would be less than 5% but it still sounds too much to me.  But he seemed confident that there wouldn't be any long-term effects.  However, he did say that there are options to avoid the heart catching any of the beam.  The most common (and he said effective) is the deep inspiration breath hold which helps to push the heart away from the chest wall.

I had my planning meeting yesterday (Friday) so things are moving pretty quickly.  

What can I say about the planning meeting?  Well, it was pretty daunting at first but the Radiographers were very keen to make sure I was comfortable lying on that horrible flat bed thing with the hard black panels.  I was very nervous about having to have my arms stretched out over my head for a long period of time but I think the post-op exercises must have helped because it really wasn't so bad.  They rest your arms on a kind of frame which helps a lot.  I can honestly say I was quite comfortable throughout the whole process which made it easier to keep still.  Then they do lots of measuring, making various marks on your boob which ends with three little tattoos - they're only dots so don't really notice much.  Then I did the deep breathing technique and held my breath, first for 10 seconds, then 15 and finally 20.  A small box was taped to my chest which monitored my breathing and they took two CT scans, one while I was breathing normally and then another while I was holding my breath.  This is to see how much of a gap is created between my heart and my breast.  They were really pleased with the gap while holding my breath so that is what I will have to do during the actual treatment.

I had to wear a mask throughout and I was worried that I would find it difficult to do the deep breathing, but it really was ok.  The important thing to remember is to relax (it is possible!). 

I am still concerned about the possible effect on my lung but the Oncologist and my Breast Cancer Nurse both said it was low risk.  Even though ACC has a low risk of coming back, it seems radiotherapy will reduce that risk even further so I think I should have it.

My treatment starts on 28 October for 5 days, that will take me over to the following Tuesday because they don't do the treatment at weekends.

Please let me know how you are getting on and I'll keep everything crossed for you that your margins are now clear. xx

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Re: Diagnosed with rare cancer - Adenoid cystic carcinoma (ACC) - advice wanted please

That's great news, and good that you can move on to the next step. I hope you find out all you need to know tomorrow, and it's good that you don't have to wait weeks.

My second surgery was unexpectedly brought forward, and I had it this Thursday just gone. The consultant warned me that it still might not give clear margins as my tumours seem to be awkward, ill-defined ones, but I'm hoping it will of course! I don't get results for another couple of weeks. I'm glad to have got it done.

Good luck with seeing the oncologist. I will be interested to hear how you get on, and what they say about the left side and radiotherapy, as mine is also on the left side! xx

 

 

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Re: Diagnosed with rare cancer - Adenoid cystic carcinoma (ACC) - advice wanted please

It's all good!  Thank you for asking... lymph nodes are clear and also a clear margin.  My appointment with the Oncologist is on Monday which was a surprise, I thought I would have to wait 2-3 weeks for that.  I am concerned about radiotherapy as my cancer was in my left breast ("was"... I love saying that!) and I am worried about any side effects to my lung and heart.  So lots to discuss on Monday.

How are you doing?  Do you have a date yet for your surgery?  xx

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Re: Diagnosed with rare cancer - Adenoid cystic carcinoma (ACC) - advice wanted please

I’m glad you’re recovering well :). Just wanted to say Good Luck for today, getting your results - I am keeping my fingers crossed. When you get a chance, let me know how it goes xxx

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Re: Diagnosed with rare cancer - Adenoid cystic carcinoma (ACC) - advice wanted please

Be strong @endless_sea !  I had my surgery (exactly the same as yours) on 8 September but am only going to get my full results next Wednesday, 30 September.  It's been torture waiting so long... But I am doing well, the recovery has been really good and I have been out walking every day.

Like you, I am doing my exercises, it's more painful under the arm, although recently I have had some pain in the nipple area, but nothing too bad.

Please do let me know how you progress and I will let you know how I get on after Wednesday. xxx

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Re: Diagnosed with rare cancer - Adenoid cystic carcinoma (ACC) - advice wanted please

Hi,

I've only just joined, and am also wondering how things went, and with you too Lyn100. Did your surgery go okay and are you recovering well?

I've recently been diagnosed with ACC of the breast, and had wide excision and SNB on 3rd September. I've just had my results, and although the nodes were clear, my margins weren't, so I'm going back in for more surgery in October. I've been told I'll need radiotherapy, but that there are no other treatments known to work on ACC. I had two tumours close together, one of which was painful, so I'm glad that's gone!

I'm now trying to deal with painful cording, but I'm doing my stretches and trying to massage the cord - so far it's only getting worse, but I've heard that can happen before it starts to improve...

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Re: Diagnosed with rare cancer - Adenoid cystic carcinoma (ACC) - advice wanted please

Hi Ladies,

I know you posted this over a year ago, but I have just been diagnosed with ACC.  I haven't been told much about it at all, except that I will be having a wide local excision and sentinel biopsy on 8 September.  I'm so nervous and anxious... all I know is that this cancer tends not to spread which I am desperately clinging on to.

I do hope everything worked out well and you have made good recoveries, and I would love to hear your experiences.  Big hugs!

Lyn

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Re: Diagnosed with rare cancer - Adenoid cystic carcinoma (ACC) - advice wanted please

Hi, I too was diagnosed with adenoid cystic cancer in March. I have had a lumpectomy but am still awaiting decisions to be made about radiotherapy. My understanding is that as it is rare the oncologists want to discuss this with me. Just frustrating as every time I go for a follow up appointment (I had had to have a second op as the margins weren't clear the first time) I think I will find out what next but not yet. Did you have radiotherapy? Hope you are recovering well now. Catherine
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Re: Diagnosed with rare cancer - Adenoid cystic carcinoma (ACC) - advice wanted please

Hi ktjo,

Not a lot of help on this in view of your specific question, but just wanted to welcome you here & do  come & chat or vent on anything bc related. Whatever our diagnoses, we all go through similar experiences in relation to feelings, coping & treatment. 

ann x

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Diagnosed with rare cancer - Adenoid cystic carcinoma (ACC) - advice wanted please

Hi

I was diagnosed with breast cancer last October and after a lot of tests have fairly recently found out that it could be Adenoid Cystic Carcinoma.  I understand that it is a very rare form of cancer so I'm looking for someone out there how has also had it and to share their experiences of it.  My consultant has only seen one other case of it but there must be other ladies out there so I'm hoping you might be able to get in touch and share any information you learnt along the way.  So far tests have been inconclusive as to whether it is ACC or salivary gland cancer - did anyone also find this was the case?

I have seen old posts of ladies with this form of cancer too but the threads have been closed so I know there's someone else out there! I'd love to hear from anyone so please do get in touch.

Thanks

Katie