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Decision time.....

10 REPLIES 10
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Re: Decision time.....

Hi Firecracker,

 

Thanks for replying. I'm sorry you're going through all this again and now facing mastectomy. I hope you heal well.

 

Can I ask Have you been on hormone therapy? Tamoxifen or Letrozole?

 

Six weeks radiotherapy is double what they recommend these days. Did you use the deep breath hold technique (to protect your organs) when you did it then? I am glad you have been reassured about your heart and lungs. Most people think it's the burning during treatment that's the issue but not many think about organs being affected. If you read the NICE guidelines 're breast cancer though it is explained they are trying to effectively reduce using radiotherapy and chemo as survivors are living longer so can be negatively affected by after effects of treatment rather  than cancer recurrence e.g. Heart disease. So they are aware of it but I don't think many patients are. I spoke to a friends of a friend of a friend who had rads about same time as you who reassured me there was nothing to worry about as it didn't hurt and no damage to the boob (also small breasted) . But she developed another condition about a year later which could be linked and said she did now have a scar on her lung.....But she doesn't link these to radiotherapy .

 

Thanks and take care.

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Re: Decision time.....

Hi again,

Brumrunner/ Leonie68, the rads seven years ago were also on my left breast, so yes, I was worried about my lung and heart and asked several oncology medics about it. I remember my surgeon's face when I asked him if I really needed radiotherapy after the removal of such a small lump, he looked at me as if I was totally insane/ extremely ungrateful.

Anyway, during all the tests I've had since the this new diagnosis, my heart is apparently 'perfect'. Also, on Friday I had the pre-op appointment with the anaesthetist for my mastectomy and I asked her if, seven years on, there had been damage noted on my lung and she said there was absolutely nothing indicated.

The strange thing is that when ever I asked about this in the past the medics often seemed surprised, as if no-one (no patient) had ever raised the issue. 

Leonie, I'm very small breasted, but despite that the left side of my breast has definitely been affected by fibrosis, though not until about two or three years after the radiotherapy. 

FC

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Re: Decision time.....

Hope you make the right decision for you Brumrunner which is all any of us can do and hope for the best as a great deal of luck seems to be involved in the eventual outcome good or bad. You have to hope for the best but be

prepared to cope with the worst of your eventual choice. I understand your confusion as both come with risks....it's my left side too for rads so heart and lungs damage is my concern....or fibrosis a few years down the line. But as you say, mastectomy has its own risks too which if you read Liz O' Riordan's online blog now you've read her book you will appreciate. Glad I'm not the only one torn. I have about a week to decide and BCN urges me to talk to radiologist first who will 'settle my nerves'. She is obviously concerned I do not live to regret mastectomy as 'We can't stick them back on (I know!). But I will potentially be the one living with damaged organs and a 'shrivelled' boob ( thanks for the candidness firecracker) if rads go badly. Could you not see your radiologist before making a decision?

 

The only reason I was offered a choice was because it was in both breasts, just one and they don't offer the choice......lumpectomy and rads  is the standard recommended treatment and as with most cancer treatment they underplay the side effects as otherwise most people would run a mile. Cancer is an aggressive disease so it needs aggressive treatment to beat it.

 

You don't mention reconstruction?

 

Firecracker.....what size bust are you? It's just that BCN assured me small breasted women fare better with rads with burns etc but short term effects not as much a concern as they heal.

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Re: Decision time.....

Hi Brumrunner,

I'm 55. I had six weeks of radiotherapy seven years ago after a lumpectomy. The process itself was okay, apart from an emotional meltdown in week five. Subsequent check-ups confirmed that everything was fine, and that my skin/ tissue had responded exceedingly well (I had a good homeopath, may that helped.. )

However, after a couple of years, the skin on one side of my breast had become ugly, and my breast has shrivelled a bit, there's no other word. This (see my recent posts) is presumably the reason why I now can't have an implant reconstruction (I have a new tumour and am due to have a mastectomy soon).

Still, I can't say I would have been easily persuaded seven years ago to have my breast removed instead of radio.

Hope this helps with your process.

FC

 

 

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Re: Decision time.....

Thanks for those thoughts - and may I wish you well on your journey.

I've got the book - and read it cover to cover twice now!!!!

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Re: Decision time.....

Thanks.

Radiotherapy has both side effects immediately / in the short term, but also potential long term damage to the lungs and heart.  And it's weighing these up vs the side effects/ long term effects (including psychological) of a mastectomy.

Throw in the fact I wasn't offered the options to start with, which has made me more confused!

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Re: Decision time.....

Ooops.....that website is breastcancer.org and the book is The Complete Guide to Breast Cancer 🙂

 

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Member

Re: Decision time.....

Hi Brumrunner,

 

I am glad I found your thread......you are in a similar position to me but I had one node positive and am getting mixed messages as to whether they would do radiotherapy to whole chest o r just boob. Waiting for radiotherapy consultant to confirm as surgeon and oncologist disagree.

 

I w as offered choice of mastectomy with reconstruction (didn't want to go flat) o r lumpectomy as it was in both breasts. As all biopsies came back as low grade DCIS, no further treatment than surgery needed. I had concerns about complications with implants and PMPS (post mastectomy pain syndrome) so took the road of least harm. It was also the exact time FDA in America officially acknowledged implant sickness and the link to large cell lymphoma.  I also felt reassured by yearly mamm os that picked mine up early but I couldn't feel anything sinister. With implants no mamm o just self check and hands on check by consultant yearly. But surely a lump means it will be further along before it's detected than a mammo? Also felt implant would impede detection of lump in chest wall but some say as implant under muscle chest wall is effectively pushed up against skin? My consultant kept saying outcomes were the same medically for either so it was a personal choice.  I didn't even look into effects of radiotherapy or chemo as I wasn't expecting them. Unfortunately results surprised everyone when left side was 10mm invasive and sentinel node positive. I then had full clearance 'and two week wait wondering if it had spread and facing reality of chemo and rads. I dreaded both when I realised permanent damage they can inflict. I escaped chemo as they were confident as they can be it hadn't gone beyond  sentinel node and was really slow growing. In what seems like forever I have been waiting for radiotherapy appt I have begun to Think a mastectomy would be better as after facing the scare I have had I never want to go through this again. BN said can get recurrence after mastectomy as some breast tissue always left behind. What they never said when I asked for all info to help me decide was that mortality outcomes are the same for both but recurrence rate for lumpectomy are higher. I only found this out on an American site breastcancercare.org which uses stats......something My consultant said didn't exist when I asked about my chances of recurrence...it was in the hands of the gods! BN said had only slightly higher chance than someone who had never had it.

It's a swings and roundabouts choice and very personal. Check out the website but verify the reasons for your choice with your medical team. I got the website from a book written by two doctors, one a breast surgeon who also went through breast cancer 'All you need to know about Breast Cancer' by Liz O'Riordan (she also has online cancer blog) and Trish Greenhalgh.

Good luck making your choice and would be interesting to know what you decide and what your medical team think. I have been very close to asking the same thing but positive node may mean either way I would get radiotherapy so no escaping it 🙂

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Re: Decision time.....

Hi I had a single mx. No recon... I didn't have an option but this was my original choice anyway. I found the mx was surprisngly quick and easy to recover from,  I know I was very lucky in that respect.  I've also had chemo and rads too and after chemo the rads were quite straight forward too... But some people suffer worse, we are all different.  In terms of getting back to physical activities I swim, walk etc.. I do suffer with stiff joints and pains but think that's the Tamoxifen.  Find out as much as you can about your options before you decide. 

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Re: Decision time.....

Had surgery chemo and now having rads and taking Letrozole

 . It is totally painless just 5 minutes after they have lined you up and not even the slightest SE so far ... why would you want a mastectomy unless necessary ? 

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Decision time.....

I wonder if anyone has any personal reflections or facts/ online links to information that might help me?

Following a WLE and SNB which had, thankfully, clear margins and clean nodes I have been offered radiotherapy (and anastrozole).  However, when I countered with could I have a mastectomy instead of the radiotherapy this was agreed this could be an option.

I am a reasonably fit 50 year old who enjoys sport (running, hiking, weights), and also worries about the risks of radiotherapy on the left side of my chest, and wants to get back to a 'normal' functional life asap (some of the threads suggest radioRx can take as long, or longer, to get over than a mastectomy) - the aesthetics are less of a priority for me.

I am struggling to find any resources to help me make this decision, so if there is anyone out there with personal experience (good or bad), or information they could share it would be appreciated (I would like to get on with the decision making prior to my oncology appointment, so I can then move on asap)