Reconstruction diep and radiotherapy
Jenny66
Member Posts: 34 ✭
My name is Jenny and I'm 51, I just went for my mammogram and just got told that I have high grade dcis low grade invasive on my right breast and it is scattered over 51mm am still in shock as the surgeon wants to do a masectomy and then is talking about chemo and radiotherapy but the nurse is saying that I'm in a grey area and won't know til after the op and the pathology report I had planned on doing a diep reconstruction at the same time but am now not sure what to do I can only have so much time off work and cannot afford to keep having operations, I'm still feeling shocked and seem to have trouble comprehending everything does anyone have any tips or experience I'm tempted just to pretend this isn't happening...
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Hi Jenny,
Sorry you have arrived here.
I was diagnosed a year ago and it is such a shock and feels like a freight train is rushing through your life and mind.
its a cliche but it is really important to stop, breathe and take it one day and one step at a time.
It was slightly different for me. I pretty much knew I would have to have surgery within weeks and chemo was a given.
I expect having a 'grey area' with regards to treatment doesn't really help.?
It encourages hope but then can also be a shock if the treatment types change.
The bcna kit will help and if you have been allocated a breast care nurse also.
I had a (L) mastectomy for carcinoma of breast (skin sparing) with expander initially and prior to chemo.
I did want to do a double to reduce risk but waited on pathology results and eventually had second mastectomy, post chemo.
its hard having multiple surgeries but sometimes that is how it pans out.
The best laid plans go awry.
Unfortunately most cannot afford financially to have extended time off.
i bit the bullet and decided my health and state of mind would best be served by stopping a stressful job and spending time recovering and repairing.
Financial options and entitlements are something to explore...income protection? Superannuation? Sickness allowance? Some of the options to consider.
You will find that there is an even split of women whom have chemo side effects which prevent maintaining full time work and those who don't experience the worst of it. Everyone is different.
Sensible research may ease your mind but Dr Google will not.
I will soon have surgery to exchange expanders for implants and Herceptin to finish in December.
A year ago the timeframe of treatment seemed insurmountable but it does bubble along and it does end and is completely doable.
i hope you find some relief soon from this shock and head space to think slowly and clearly to jump each hurdle as it appears.
best of luck.
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Hi @Jenny66, not much more I can add to Amazonia's post but I wanted to welcome you to the forum. I'm very sorry you find yourself here but it is a great place to find support and information from women and men who truly understand.
There is a huge amount of information to take in at first and we seem to be tossed into a whirlwind of tests and appointments. You will feel more in control once you get your final pathology and there is a clear treatment plan.
I had my surgery 1/8/16 and the past 12 months has flown. I had a 12mm invasive ductal carcinoma. I chose a left nipple sparing mastectomy with an immediate implant. I was very fortunate in having early detection through a routine mammogram - Grade 1, stage 1, 3 clear lymph nodes. No chemo or radiation, but I am on a hormone blocker for at least 5 years as my cancer was 100% receptive to both Oestrogen and Progesterone.
There is so much to take in during appointments so I started jotting down all my questions in a notebook (no question is silly!) because I was bound to forget to ask something when speaking with the doctor.
Everyone here has had a different diagnosis and treatment but we have all been where you are today.
You are not alone in this Jenny, we are here for you. Take care and keep in touch. Jane xx
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Hi Jenny66, it's a lot to take in at first and you feel like it's all just a bad dream.It's a scary,anxious time but once you have a plan, you'll feel abit better.A DIEP recon is huge surgery and can always be done at a later date. You need to talk to your surgeon and plastic surgeon and have all your questions answered before you can decide. One question I would ask is what happens if the surgeon doesn't get a clear margin and you've had the DIEP done? My friend had a mastectomy and had to go back to theatre twice to get clear margins. Perhaps you could join the reconstruction group on this network? The ladies will give you lots of info and support.I, myself have had bc twice. The first time I had a lumpectomy and radiation in 2003.Cancer came back in the same breast 7 years later(2010) so I had to have a mastectomy and then chemo. If I have recon I can only have a DIEP because of my previous radiation- skin is never the same.I haven't rushed into it as its huge surgery and I'd like to research first ie, best plastic surgeon, both breasts or one? We are all different and some women can't bare the thought of waking up without a breast. For me, it was like get the cancer out quick smart and I'll deal with the consequences later. I'm used to a prosthesis now but get abit sick of the lopsided thing. Just do all your research, take into account your doc's recommendation and go with your gut- what feels right for you at this point in time.All the bc decisions you have to make are awful anyway.Keep coming back here for support because we know what you are going through.Big hug.xx1
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@jenn66 sorry you are here but a big welcome. Its scary and overwhelming! Ive been on this road for 6 years 2011 and recurrence in 2015. Sounds like you have multi focal dcis being scattered? @nikkid can help with her experience in which she had to have a mastectomy.
Im not sure you could have a diep flap at same time as theyd need pathology? I had mastectomy and diep flap reconstruction in feb but that was a year post treatment. Its a massive operation and i had 8 weeks off. Ive just had a revision surgery and in my 2nd week recovery another week to go. Unfortunately most surgeries do require alot of time off. I was lucky to have inbuilt income protection so has helped a lot. Hugs Melinda xo1 -
As I was having bilateral mastectomy I wanted immediate reconstruction and was keen on a diep flap. My breast surgeon suggested tissue expanders etc as he was concerned about the delay in surgery and the delay recovering before chemo. I was a grade 3 es+ her2+ idc stage 1. They were fairly certain no nodes but until sentinal biopsy no guarantees so radiotherapy under arm area wasn't known if needed until after. My surgeon opted on tissue expanders 3/4 filled so I awoke with breasts. Recovery was 6 weeks for me. I didn't need radio.
I then went to chemo and I wasn't able to work for any of it. I was able to claim against my life insurance to get through. I'm back now and had my changeover surgery and was back at work within 2 weeks. Hardly any pain from that at all.
I think it's important to consider what you can do if unable to work or need extra time. We are all different, people recover differently from surgery and chemo doesn't cause as many problems for some as it did for me.
I hope all goes well for you.
Also we have a group "choosing breast reconstruction" you might want to join it as there are many photo oics of the diffetent procedures done on the lovely ladies here. Kath x0 -
Hi Jenny, I can so relate to your desire to bury your head in the sand and pretend it isn't happening. It is so overwhelming having to make decisions when you really don't know enough to decide and are not in the headspace anyway.
For me the decisions were pretty much made for me in a lot of areas.
I am 57.
Two lumps and one DCIS found at lumpectomy and 1 sentinel node positive.
This meant mastectomy after chemo followed by radiation.
I plan on having a DIEP reconstruction but have put myself on the public waiting list. That is a 12-18 month wait with my surgeon.
I am actually happy with that as my body has taken a beating with two major operations. (I had a bilateral reduction at the same time as lumpectomy) and chemo which was not tolerated well.
I have just had a right mastectomy on Thursday 3rd August.
I want time to get over everything before facing a major op like DIEP.
Plus I have already been off work for the best part of the year. I am self employed, I don't work, I don't get paid and the bank balance is suffering.
Having a mastectomy and DIEP at the same time is a huge operation with a long time under anaesthetic and long recovery. It is tempting to want to get it out of the way in one go, but think carefully about it.
Radiation may also dictate what you can do.
my PS and breast surgeon do not advise DIEP before radiation as it can damage the tissue and cause the DIEP to fail.
Radiation with an expander in can damage the expander and mean you have to have it replaced or removed.
Radiation can damage the skin and mean you need at least a 12 month recovery before DIEP flap can be done.
These risks and decisions need to be discussed with your surgeon, they are just what came up in my situation.
The more questions you ask and get clear in your mind, the better able you will be to make decisions.
Good luck with shaking yourself off and taking control of this horrid ride.
Keep coming back with questions, we are here for you.0 -
All good advice, but just reiterating that you don't have to decide now and as Melinda says, you may find a bit of time therapeutic, financially beneficial and instructive. While many women want and have a reconstruction sooner or later, many don't. It's a very personal decision, and becomes a lot clearer post mastectomy. You may also need time to think about what kind of reconstruction is best for you and that again may be clearer once surgery is over and you also know what treatment you may have post surgery. Almost everyone wants to get back to normal as soon as possible and almost everyone ultimately comes to grips with the new "normal". It's not necessarily better or worse, just a bit different and your views and thinking can shift. Best wishes, it's a scary ride but lots of us get through it.3
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Thank you everyone for sharing your thoughts, feelings and experience with me, reading your comments definitely helps with decisions - some are still too scary to put much thought into - I saw the surgeon today and had some good news after further checks he seems to think I won't need chemo and he's 90% sure I won't need radiotherapy, I'm still having a masectomy and lymph node check but still won't know all the results until after the op so that 10% will no doubt be playing on my mind. I seriously think I had an anxiety attack before I saw him, it is so easy to think the worst I see the plastic surgeon on Wednesday so am still deciding about reconstruction jenny66 x1
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That's all good news!0
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@Jenny66 wishing you well and a clear head as you go into your appointment today! You can't put yourself into the what if, you can only work with what it is! It is a brand new world of terminology and specialists that we've never had a need for prior. Chin up, as others have said it is all doable and we're all here to help you along as well as! Take care x2
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Thanks guys I spent a few moments thinking about the irony of life today, the last 3 months I've been on a health kit and have lost about 3- 4 kilos and was proud of being able to fit into some old jeans, today the plastic surgeon is worried that I haven't got enough tummy fat to have a diep and has told me to look at a pap reconstruction, it's hard not to feel slightly peeved off with myself Am having CT scans on Friday and go back to see her on Tuesday with my decision, at the moment she has penciled me in on the 4th September, I think it's finally starting to sink in and am starting to get nervous and I think I've developed a twitch in my eye jenny66 x0
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Congrats on the weight loss. I hope you find a good answer for the reconstruction.
Dont feel bad about anxiety attacks before appointments, I had to have Valium before all my appointments at first, if the specialist was running late at all, I still felt the tension rising.
8 months along and I am getting to the better appointments, and the anxiety levels have dropped.
I will probably still need Valium before scan result appointments though.
The scans for DIEP flap are interesting. My Plastic Surgeon showed us the scan on his computer, running up from my knees to chest, very interesting stuff.
He was following the veins but you could see the kidneys, liver, spleen and other bits coming into the screen.
My veins are not in the ideal place for DIEP flap and are rather small, but he thinks if he uses a little tram flap ( taking a patch of muscle) he should be able to do it.
I have plenty of tummy for it though, and yet he said if I lost weight it wouldn't be a problem?
Apparently you get the best result from tissue breast reconstruction if you are at your ideal weight, so don't feel bad about losing it, you will have a better chance of a well shaped and matching breast, and you will be fitter and better for recovery too.
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xx
