I am brca 1 and have decided to have a bilateral mastectomy as prevention to ever getting breast cancer.
I am on avastin only after my chemo for oc stage 3c. I have just read that while on avastin the healing process takes longer.
It's made me wonder if they will go ahead with this operation while I'm on avastin??
My appt to see the surgeon is 6th Dec so I will ask then but just wondered if any of you out there had gone through surgery while on avastin and how well you healed??
Had a lovely massage today at my local hospice. Feeling good today. Hope all you are having a good day too.
Xx
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Millie-c
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Hi Millie . I dont have any answers but I have to say I think your very brave. I decided against a mastectomy for various reasons. Im BRAC2, I know I can have the op at any time but at the moment I have mammograms annually. I hope everything goes well for you xx. Kathy xx
I'm not sure about brave, I'm quite scared but feel iv been through so much already so might as well finish the job off. I'm thinking this will be later rather than sooner with the avastin. Just want it over with. Thanks for your reply. Xx
I was reconsidered for surgery in August (I have never had debulking, just carboplatin/taxol and Avastin) and was told if surgery had gone ahead I'd have had to stop the Avastin for a month before. It has to do with bleeding/healing.
Hello...I would be surprised if they let you have surgery while on Avastin. I had to take time off to have emergency dental treatment which wasn't actually invasive.
Also have you spoken to a geneticist about how much of a threat breast cancer is for you and your specific BRCA mutation?
Maybe you have breast cancer in your family?
It's just that with my version of BRCA 1 they told me that OC was more of a threat xx
I have spoken with the genetics team and it is them that have referred me to the breast clinic. It is a family history connection with the brca gene where most have had breast cancer as apposed to oc. I get the feeling while on avastin it won't happen so I think I will ring tomorrow and ask the question. Thanks for your reply. Xx
Was going to reply with something similar. They wouldn't take my tooth out whilst on a vast in so I think they would want to stop your avast in for major surgery X
Hi Millie, I think it best to speak to your team, I know I had a colonoscopy and the surgeon was not allowed take biopsies but thank god I didnt need them. I think you have to wait six weeks pre op and six weeks post op well that is how it is over across here. There is a bigger chance of bleeding while on Avastin.
Hi Millie. I'm also brca 1 and have been scheduled to have a double mastectomy twice now but due to a recurrence I had to put it off. I was weighing up the risks and thought I would delay for a while BUT I was at a brca conference on Saturday and there was a consultant speaking at it. They advised us that new research is showing that having ovaries removed does not reduce your risk at all with brca 1. As you can imagine I was in shock as I was previously informed that it reduced it by 50% !
It's now back on the priority list for me. I'm going to have a chat with my Onc at my appointment end of this month as I'm on a parp inhibitor and need to see if there are any potential complications.
I am very interested in what you said about the risk! I had my genetic test a couple of months ago and should have the results soon! The geneticist told me that as I had my ovaries removed that should decrease the risk by 50%....and to be honest I had more or less decided that I wouldn't go ahead with the surgery if the results were positive! I know I have no results yet but they seem to be quiet confident that we (my sis had breast cancer just before I was diagnosed and we are both in our 40s) will prob be positive! So at your conference they said that removal of the ovaries doesn't decrease the risk??? Looks like I will be like you and have to seriously reconsider the surgery........!!!!
Hi. Apparently for brca 1 there's no reduction in risk. I was in shock ! It does reduce risk in brca 2. I have been kidding myself thinking that you would need to be really unlucky to get both cancers at once then randomly a friend told me on Thursday that she has and went to the conference on Sat to hear this.
I've taken the last week to get my head around it and going to speak to my Onc and breast surgeon to see what best way of moving forward is. I was to go in July past but I had just finished treatment and needed a break. My Onc wanted to prioritise the actual cancer rather than the risk xo
Hi it was at a brca conference in Ireland. There was a gnae Oncologist and a breast surgeon speaking. It was new research that has come through. Sorry don't know anymore than that. Trying to avoid googling it.
Hi Julie, thanks for your reply. Its a difficult decision to make and each individual is different. The risk for me is too large. I wish you well with your decision for surgery. Xx
It is so much to take in. I'm like you and trying to prioritise. I think I would love someone to make the decision for me but my Onc gently reminds me it's my choice. It's a tough one xo
As I understand it, obviously with the exception of an emergency, no surgery while on avastin. I had surgery in the middle of my chemo and it was planned that I had no avastin the last chemo cycle before surgery and a minimum of a 5 week break after surgery before getting any avastin. I also had to inject myself daily for 6 weeks post surgery with an anti clotting drug.
I was on avastin from the start. just had a break last chemo before op but back on it first chemo after only 3 weeks after op. I had a small problem with my wound but everyone has said how well it has healed. So for me I don't think it made a difference and that was with chemo too. I hope you get more replies. I think you are incredibly brave xx
I will be interested to see what my surgeon will say but it definitely looks like I would have to hold off on the avastin treatment. I suppose I need to way up the options as to which is more important. Xx
I asked my oncologist to be brca tested but she said I would only be tested if I had a recurrence. does that sound right. I hope you get satisfactory advice at your meeting that let's you clearly make a decision. xx
I would of thought if you asked to be referred to genetics they should. It is only a blood test. It's not like you have not had loads of them. I don't see why having a recurrence should make any difference. If you want the test I would ask again. I thought it was best to know incase I had passed it to my daughter, luckily she didn't inherit the gene. I can't tell you how much that put my mind at rest. Xx
For the same reason Mandy. My daughter is 22 and I want her to know. Also if I've had PPC I've had it! Her recurrence logic does not make sense. Definitely fobbed off. I'll ask again. x
Morning Mandy, I hope you enjoyed that massage and the feeling of well being lasted into today!
I thought I'd add some extra ideas into your into the pot! Like you I'm 3c ovarian cancer and I just started avestin on Wednesday. Im a bit headachy and queasy but very copable with at this point (sorry to digress). I'm also a brca 1 and a brca 2. In 2006 and 2007 I had 2 different types of breast cancer. For both of these I had lumpectomies. They removed the cancers and the sentinel node. Having tested the node they saw it was cancer free and so left everything in place.
Am I comfortable with this now that I know I have a brca abnormalities - yes definitely. Do I want to book myself in for a double mastectomy- no, not at all. I recently chatted to my genetic consultant and she felt that 1) the chemo I just received for ovarian cancer had 'covered' me for the breast area for potentially 5-10 years And 2) that I needed to preserve my strength. I'm not quoting her here as she said that in a kinder and better way. But they don't know where my next cancer will come. So Preventative surgery doesn't make sense for me. Rather, monitoring by regular screening, rebuilding energy and strength is best in my case.
I realise we are all different and many women in my place would have had mastectomies 10 years ago.
To be honest it sounds like you want to go ahead but I wanted to mention my story and the advice I had. I have regular breast screening. In fact I'm off on Tuesday for an MRI and mammogram. Stressful just thinking about it but once done I hope to be ok for another year.
Good luck with your choices.
I can't tell you how tired I am of hospitals and doctors. im also tired of people being kind and helping me. It's so wearing being grateful and then sharing your health story. Sounds like I need a massage doesn't it!!
It is a difficult decision to make and I was going to ask the consultant if he felt I should get stronger before anymore surgery. Part of me wants it done out the way and the other doesn't want it at all so I can understand how you feel. Xx
I had a double mastectomy 2 years ago as I also have BRca1, don't regret it for one moment, I thought I'm damned if another bugger is going to get me if I manage to survive OC!! My risk was 85% now down to appx 2-4%. If you want any details please message me though I was not on Avastin. Lots of luck xxx
All things considered do ask your Oncologist for his view on it, mine was six weeks but as you know they differ, You are between a rock and a hard place. My thinking on it is that the Avastin is working for you so it is also used for Breast Cancer so hopefully it is keeping all the nasties in your body away. It is a hard one though
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