To have the op or try alternative

Hi G n'J

How did you know I like 'puddycats'! Absolutely gorgeous picture.  Laughter is good medicine as well.  Thanks for your comments and support.

.... still fighting this nasty little critter....

So glad all is well Chloecat and do hope the photodynamic trial lgoes through at some point.

I have decided to go with surgery so this should be happening in next few weeks.  I cannot tolerate the letrozole any longer so this means I could come off this AI after surgery, at least to have a break.  Not sure I want RT either, but will make a decision on this later.

Take care of yourself.

Heather

Hello Chloecat

I started to read this thread from the beginning about an hour ago...it has enthralled me, and I was aware all the time I was reading that I soooo hoped you would have posted a reply recently, and then as the thread progressed and you talked of your latest appointment on the 18th June, I just was praying that you had put an update after it.  And you have!!!

Marvellous.

I so admire your approach and hope to follow at least the 'attitude' of your actions, if not the letter.

So..just a quick tale about me....I was diagnosed two and ahalf years ago with a very small lump...noticed a crease in my breast and got it looked into.The lump was 17mms. Very small compared to others. Think it was DCIS (not sure if thats right but it sounds ok to me). Anyway, \i had a lumpectomy, but I didn't have radiotherapy or chemo. Or tablets afterwards. However, I took a load of salvestrol for a month or so then sort of forgot about it, as luckily there were no other complications I had to think about.

Two weeks ago had a mammogram/scan/biopsy. Recurring cancer. Lump the size of an egg. Advised to have mastectomy. Single. Surgeon said I couldn't have double (which I had wanted...not to stop it coming back, but because it seemed to me neater and easier to deal with....and I dont want a single boob...that seems stupid to me). I am nearly 62 and dont have any particular attachment to my breasts. I am a gay female, not straight ...the whole issue around breasts as 'feminine' or sexual attaction for straight males doesn't factor in my life at all.)

The Consultant (junior) then talked about breast reconstruction. I was in a bit of a shock about it but listened to all he had to say. Then listened to the breast cancer nurse, who was lovely (less inept that the junior consultant) and described in detail the processes etc. Gave me a leaflet with diagrams too.

I have to say the whole process scared me more that the idea of a double mastectomy!!!! First i have to undergo a ten hour operation and months  (more) of recovery time as both the breast and other wound heal. Then, when the breast swelling has gone down, I have to endure another operation on the healthy breast to reduce its size to more or less the same as the cancer boob. Sort of plastic surgery I believe. And then!!!! I can have nipple reconstruction and possibly a tattoo.

Up to four op if I choose them, But at least two to ensure that I look the same each side....remember I would look the same each side if I had a double mastectomy....only one op...over and done with.

And as far as I can see, the surgeons think this is better than a double mastectomy!!!!  

The reason they give for not doing a double is that they feel it wrong to cut off a healthy boob. But funny enough, they dont think it wrong to mutilate the healthy boob so that it can be made to fit with the social stereotype image of how a straight woman should look 'to attract a male', and fit into the stereotypical categories of 'feminine beauty' as women have been nurtured to believe it should be. I am proud of who I am inside, not what encases me outside.  (I know that may be seen as an  extreme viewpoint because the reconstruction seems to be what many women want, but for those of us who dont want it, like me, it strikes the right and appropriate chord)

I am having a CT Scan within the next two weeks, and then an appointment with the operating surgeon, once he "has all the facts"....then we can discuss it further. Its the first time I will have met him so it should be interesting. Especially to know what 'facts' he considers to be important, and what 'facts' are not.

Even before I read this thread I had decided to once again request (isn't it funny how we women have to request from what is largely a male establishment (or at least its ethics stem from that historical place)) a double mastectomy and not go down the reconstructed route. And I will also ask for more time to think about it...even if I am told I can have  the double. I found out last time that the establishment didnt really give me time to think about what it would all mean....in retrospect I felt railroaded....that wont happen this time for sure!

I am truly not scared of dying. I am 62 years old and a buddhist...what will be will be.

However, I do have adult children who would be very upset if I didn't try something. I know its my own body, etc etc, but I do believe that when you have children they (and any happiness in their lives to which I can contribute) are a responsibility to some extent, even when they are adults. Hence the idea of a double mastectomy. The'relatively' short recuperation time is, to me, far better that spending the next couple of years juggling my work sick leave to have at least two operations which are not really what I want. 

Anyway, I would like to say again, please please continue to tell your story on this thread...it has been an enormous help to me in my own (very recent) journey. And its also inspiring to hear the stories of all the other women who have shared.

I am not looking for affirmation of my views as stated above, you are all such lovely women and we are all struggling with this "nasty little critter" but I needed to present another perspective which I personally need to take into account to fit my own persona and values...to ensure we are not all stereotyped together as women.....I know that everyone else on this and other threads are doing much the same thing.

I hope no-one is offended, even if you disagree. 

Hope things go well for everyone either on this thread or on the other threads, which I have also read with interest.

Virtual hugs to you all

Lulu

Hello Lulu

How inspiring to read your post to Chloecat.  A different and very thoughtful perspective which has given me much to think about.

i hope, very much, you are given the opportunity to have the surgery of your personal choice and I wish you good results and good health after your treatment.

Like you i am not afraid of dying either but want quality of life over longevity as I am 69 now with a son of 28 , whom I also feel a sense of responsibility and love to do what I can in addressing the treatment options.

Thank you for sharing your thoughts with us all.  They mean a great deal to me In giving me even more perspective on this road to treatment options.

With every good wish to you

Heather

Hi Lulu

If you really want a double Mastectomy, ask for a second opinion.  I agree with you, it would be cheaper for the NHS, easier to recover from, and easier for you to live afterwards.

I had cancer in my right breast and when they said (after two failed ops) that I needed a mastectomy I said, fine, take both.  They said, as you have been told, that they would not remove a healthy breast, and I had a scan to prove it was, but I said that for my mental health, (plus there was a high family risk although subsequently no genetic link) I wanted both done although I did have reconstruction.  

I was also concerned that I would constantly be checking the other breast for lumps and eventually they agreed to do it.  Good luck and I hope you achieve your objective.

Hi All

Heather - in trying to find out why doctors prescribe either Anastrozole or Letrozole I came across a paper in the British Journal of Cancer.  Simply, Letrozole works 99% effectively on eostrodiols, etc (suppressing these 'enzymes' slows/kills off cancer cells) whilst Anastrozole is only 90% - hence the difference in side effects between the two, possibly.  It also says that the doctors choose which inhibitor a patient has - possibly based on the 'aggressiveness' of the cancer in the patient OR just what they describe.  It is also possible that as you were 'contemplating' surgery at the time that this would have significantly reduced the tumour to ensure only a small lumpectomy would be needed.  You don't say if you are also having the Sentinel Node excision which seems, always, to accompany the lumpectomy.  As to the radiotherapy the decision will be yours.

In researching what inhibitor we are prescribed I came across Triazole which is an anti-fungal drug.  I think our aromatase inhibitors stem from this and gives a little credence that possibly some cancers or cancer stems from a fungus (which one doctor I read about seems to think that is what cancer is) which may have triggered cancer cells to form.  With time I imagine more research will actually identify why cancers are formed.  In the meantime making sure you eat the right foods (or supplementing - with resveratrol and other items) will help to keep your immune system actively working for you as well as being physically active.

Lulubel - when I read of your recurrence being egg-sized I actually said Yeowww.  Bl***y h*ll !!!  So sorry to hear of this.  I checked up on your Salvestrols and as you are aware these are a big part of my regimen.  I am now having fresh strawberries, raspberries and blueberries on top of my 50% fruit muesli.  Along with the unsweetened almond milk its a really good breakfast.  Someone said that eating fruit for breakfast was the best time as it won't be sitting on top of previously eaten food and so not 'ferment' in the stomach - although I do still eat fruit during the day!  Love my greens as well which also provide the salvestrols.

Heather says to get a second opinion and I think this is right if your surgeon will not commit to a double mastectomy.  It's so logical to only have one operation but I note that you say it takes 10 hours to do a mastectomy for only one breast!  It actually only takes between 2-3 hours but will take longer if having reconstruction.  When reading up on the mastectomy surgery it is critical that you have a good support network following surgery if you go down this line.  Arm movement will be severely compromised thus limiting your ability to care for yourself.  With only one mastectomy at least you would have one arm free to do things.  Another lady on this site wanted to have a double as well.  She decided to only have only the one boob off in the end as the other was still healthy.  BUT as you know I am a lady who believes in the individuals' right to make their own decision on their health care and will go with your 'flow'.

My love and positive vibes to both of you.

.... still fighting this nasty little critter....

Just wanted to say thanks very much for your kind responses. Hoping it will be a shorter road rather than longer. 

Good luck to everyone. 

Lulu x

Hello Chloecat

How very interesting about the difference between a astrodome and letrozole.  As my tumour was 4.8 cams, this could well be the reason for letrozole.  With regard to Sentinel node excision, I believe this always part of a lumpectomy, although I did say to the surgeon that I did not want an axiilary clearance should there be cancer cells in the SN.  He said that may not be necessary.  This was on 10th June and he gave me two weeks to think about my decision for surgery as he feels that it can be done now.  Apparently my tumour is now 2.5-3 cms and the letrozole has stopped its growth and it has shrunk. According to mammogram in February

i have an appt on Wednesday to tell surgeon I want to go ahead with surgery as I have to come off the letrozole for a while because of severe side effects.  I have been on this for 14 months now and I am grateful it has decreased the size , but my quality of life has been affected in a huge way so I need to now start the road  of surgery at least.  I feel apprehensive about what is ahead as I am now 14 months down the line and this all just beginning....

i do eat pretty decent food with a great deal of fruit and vegetables every day.  I  eat some carbs, mainly rice and bread and very little meat mainly chicken and some fish, but did this prior to cancer diagnosis. Not keen on red meat for about 20 years now.  I do have some dairy and do not want to give this up.  I also walk most days for half an hour, but have to grit my teeth as letrozole has affected my joints so badly.

thank you so much for all the information.  You have very obviously conducted hugely in depth research into cancer and I am very glad you are sharing this with us all.

take good care 

with my very good wishes to yo

Heather

Hello Lulu, thanks for sharing your thoughts about mastectomy and reconstruction. I can see exactly where you are coming from. I have heard other women say they didnt like being 'lop-sided after single mx. I really dont get how this doesnt seem to be considered a good reason for having them both off if you dont want reconstruction. Furthermore, once you've had invasive BC in one breast, you have an increased risk of getting it in the other. My initial reaction on diagnosis was 'take it off', but I ended up having WLE, leaving a painful boob with no nipple sensation, so what was the point?

I tested +ve for a BRCA2 fault after my BC treatment and had double mx and DIEP recon 8 months ago. I struggled with the decision, as I did not want to spend any extra time recovering from massive surgery when the cancer might come back and kill me early anyway (I'm 56). In the end I had to search my real wishes, live as though I will survive, and went for it. I would not recommend it unless you are sure you would rather have 'foobs' than nothing at all there. My skin does feel warm and has sensation, but they dont look like my real ones. They continue to be tender and painful, and the cancer side has hard lumps. I developed severe frozen shoulder (which I did have signs of after the cancer treatments). I did have a flabby tum, but the tummy tuck has pulled my pubic area upwards, my abdomen is still tender and tight, and not flat - it bulges out on one side. I dont regret the surgery, but I think the recovery is downplayed. I'd still rather stick out in front than be flat. I'm not scared of dying either, but I hope I havnt traded quality time for a franken-bod!

Its your body and you have perfectly rational reasons for your request. I hope you get want you want without a hard fight - the cancer is enough to cope with xxx