So, here's my gripe. I would have had the bilateral mastectomies over 5 years ago,Without even knowing about breast cancer genes, when I was first diagnosed with breast cancer but I would have to have waited a few weeks to get the surgeons together and I the cancer was aggressive and i guess i was also convinced by my surgeon really that a lumpectomy with chemo and radio would do the trick and, since I was young (38), i might as well keep my boobs.
Well, seriously, don't you think that even without having proof of family history of brca1gene mutation at that point, the fact that my bc was triple negative and I was young and it was aggressive should have pointed to the possibility, however unlikely, that I might have a breast cancer gene mutation? Shouldn't one of my numerous specialists have alerted me to this and given me the opportunity to be tested? It doesn't matter how expensive it might be, it should be offered to the patient and it should be their choice.
I only recently found out that I had the brca1 mutation because a distant relative was doing the family tree and saw a high incidence of breast and ovarian cancer. She went to a geneticist to ask to be tested and it came back with no evidence. Thankfully, she insisted on them doing further testing and voila' , the brca1 mutant gene was found.
Dad met up with his cousin earlier this year at a family function( which isn't common practice for him) and she had just tested positive to the the brca1 gene mutation, past down from her Mum( Dad's aunty). His mum died too young so we don't know if she would have developed BC. It was suggested however that I think about being tested.
Well, when I took this info to my GP I was told it would be highly unlikely that I would have that inherited gene, that the family history isn't strong enough. Hello??
Fortunately, I was due to see my breast surgeon, for my annual check a week or so later. He passed the info onto his genetecist, a new member on the team, saying there's almost definitely enough evidence to do the testing and that he probably would have been calling me in to get tested this year anyway, thanks to their most recent studies and links etc.
Obviously it's easier to test for a particular strain of the mutation than going in blind but it's not impossible, as my distant relative in Tasmania found out.
Anyway, to bring the story to now, over 5 years since my breast cancer journey began and a proven mutant brca1 gene, I'm waiting for pneumonia to clear before I can have surgery. I was going in for skin sparing bilateral mastectomies with tissue expander and lar dorsi this Wednesday coming. (When that process is over I'll get rid of the tubes and ovaries.)
Unfortunately I've been sick with flu that only reminds me of how I felt with chemo. And just to top it off I developed pneumonia.
Now I've found a lump in my breast but have to put surgery off. (fingers crossed the lump will be nothing bad)
But See? If I'd been offered the genetic testing earlier I wouldn't be in this predicament now.
I don't know how clearly I've explained all this but I welcome feedback from anyone who can relate in some way to this post.
Brca1
Posted by LeeS on 12 Aug 2012, 04:25PM
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Ah Lee, what a "mess". Big virtual hug to you!
I, too, am now planning a bilateral mastectomy after having had a lumpectomy last December. Although mine is because new information about my past medical history made everyone realise that I am actually at higher risk of more cancer than usual, I feel like I got on the wrong treatment "train" originally because my breast surgeon did the same as yours. I went into my first ever appt with her last December saying that I wanted a bilateral and she talked me out of it because I am "young" etc.
Should have stuck with my first decision...
Jenn
Jenn
Very familiar. I had basically the conversation that I wrote above with my gp the other day and she said to me that surgeons often just assume that it's better for young women to keep their breast for self-image when really, if we say we are happy to go with the double mastectomy it should at least be taken seriously and pursued.
Hi Lee and Jenn, May I ask you both if you were Public or Private? If Public, do you think they just say no to the double mastectomy becaue of costs? All the best, Ann
Trust your gutt
Hi Lee I can relate. I was first diagnosed at SCGH in Subiaco after my first mammogram. I am 40 have had my children and due to my family history decided from the get go I wanted a bilateral mastectomy with immediate reconstruction. I only had DCIS so if I chose this option I wouldn't need radio and providing the nodes were clear not chemo either. To cut a long story short the surgeon that was due to do the lumpectomy lied to me and played down my diagnosis even after I had been told what it was. Basically she made me feel like I was in it for a free boob job or that I wouldn't be able to cope losing my boobs so wouldn't agree to my chosen treatment. I was even told I would need to see a counsellor before that to ensure I realised the enormity of what I was asking for as though I had no idea what I was talking about (crazy me thought it was my body). I stressed numerous times that I wasn't that fond of my boobs anyway and already lived with a constant fear of cancer. I didn't even care at that point if I couldn't have reconstruction, I just wanted my boobs gone so I could sleep at night. When I investigated her hyperplasia diagnosis further with another Dr at SCGH I was told I had infact been told the wrong thing by her, the original diagnosis was correct and that the incident had been reported to the Medical Director. I then lost all faith in the public system and went private. I am now seeing Dr Richard Martin who is based at the Breast Centre at The Mount. I can't speak highly enough of him, he recommended a mastectomy of the DCIS boob and let me make the choices about the other. He even said I can't make that decision for you it is your body. He also referred me for genetic testing as my grandmother died from BC forty years ago and my mum's sister has had two bouts one in each side. Unfortunately I have been told by the genetics team that I don't qualify for free testing. But they also said although they don't think it is BRCA 1 or 2 they do think it is genetic. They are unable to test for other genes at present but we are still considered high risk so my three sisters now qualify for free annual MRI's. I was so angry at that surgeon, I still can't believe she thought she knew my needs better than me. To be honest I don't know how she sleeps at night. I often wonder if she knows or even cares of my outcome. I have two small children I want to see grow at the end of the day who cares about boobs??? Interestingly the GP at SCGH breast screen centre as lovely as she was told me when I went in for the first core biopsy that I was there way too early and if the results of the test came back clear she didn't want to see me until I was at least 45. Pfft wonder if I would have made 45 if I had of listened to them all. As if I was there because I had nothing better to do with my time, they called me I didn't call them. I am a huge believer of everything happens for a reason so I do think I am lucky to have now gone private. I received my treatment so much earlier than if I had stayed public and it has also taught me to have faith and trust in my gutt. Not sure if this is helpful other than to point out it is your body so you should be making the decisions. Trust your gutt and have faith in yourself. Stay well my fellow Perth Pink Sister :0) Lara xx
Get Well
Just read your previous post and think signing of stay well may have been slightly inappropriate. Hope you are feeling better soon xx
I am a private patient for my surgeries so my BS actually ended up with less money by talking me out of the mastectomy at the beginning. Although I guess she's going to have made more in the long run since I'm now going back...
Jenn
The Mount
HI, I'm back online....been a while...I was/am private too. So, tomorrow is admission to The Mount and Wednesday is the double mastectomy with lat dorsi and expanders. Feeling pretty sick about it all to tell you the truth. I have Peter Willsher, who is my original breast surgeon, Paul Quinn from Subi will be the plastic surgeon and the anaesthetist has changed,... I found out this morning and can't remember his name. Can't be bothered reading what I last wrote but I had pneumonia when I was meant to have this surgery so it had to be postponed. So...here goes...XXX
FD...are you a member of Perth Previvors?
All the best
Hi Lee, no I'm not a member of Perth Previvors, haven't heard of them. I am only a member of this site. I'm not on Facebook but have heard there are many support groups who interact this way. Might have to bite the bullet and join!
All the very best for Wednesday I will be thinking of you.
Lara xx
All the best
Thanks for coming back to me with that info. All the best for the surgery and recovery. Ann
Hope it went OK Lee. I'm in preop at 6.30am this morning for my bilateral BMX with immediate free TRAM recon. Up to 10days in hospital I've been told.
Can't seem to sleep for some reason ;-)
Jenn
Hi Jenn!! How did you go??? I can't believe it's 5/10 already. You must be feeling a bit of relief by now?! I satyed in hospital from the Tuesday evening, night before the op, until the Wednesday afternoon, just over a week later. My Plastic surgeon said I could have gone home the day before but I wasn't ready. My kids and hubby were home sick and hubby had recently had a heart attack and the thought of sitting in a car for an hour to get home made me feel sick! There was only one BITCH (sorry) of a nurse who made me feel like I was being a bludger, When I asked if she could check my dressing where one of the drain sites was oooooozing, she told me that oficially I could be discharged so they wouldn't be checking it until just before I leave!!! I was so glad when she went off duty and my next nurse came in because it did need changing and I was once again made to feel that I wouldn't be judged and that what ever I decided was fine!
ANYHOOOOOOO, let me know how it all went. Thinkn of you. Where are you?
I'm here :-) BMX with immediate free TRAM last Friday and still in hospital here in Sydney until Sunday due to abdo drains not slowing down.
My BS found an enlarged breast node during surgery and it was removed along with all nreast tissue from both breasts. He was really worried about it potentially having cancer cells despite all the chemo etc I have done since January. Histology came back yesterday with no signs of further cancer in either breast and although that node was "reactive" it had no cancer cells :-) Very happy about this!
Breasts have a surprising amount of feeling and at the moment are looking bigger than I "ordered" but am hoping they will look a bit smaller when swelling is all gone. I can tell that with good healing of the scars this is going to look good.
Surgery ended up taking 12 hours as it turned out I had abdominal and umbilical hernias and had not realised. The PS took extra time and fixed it all. Tummy stretch marks have all gone as has the "pouchy" look left after having 3 kids. Now just to work on getting fit again :-)
Prob going home on Sunday with 1 abdo drain in and they have organised for the community nurse to visit daily to change the bag and measure output that I have to phone in to the ward staff. Once the PS is happy with the reduced output he will issue an order for the nurse to remove the drain.
How are you going?
Jenn
PS - I am a private patient for my surgery but am still a public patient for my chemo at the same public hospital.
Weird system is that if you are a private patient in the public hospital like me you don't get access to the breast care nurse or any resources.
The system sucks sometimes doesn't it when a woman in 1 room can get visits and support and the woman in the next room gets nothing...
Jenn