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Devastated :(

21 REPLIES 21
Neadi
Member

Re: Devastated :(

Thanks Alfie!
That certainly helps and gives me some encouragement- I just don't know if I could handle waking up with only one boob, and then having to face more treatments that were originally planned.....

One thing is for sure, I just want them to get this out of me and do it ASAP! Jesus! The thoughts of it there for any longer is now driving me insane! The doc did definitely mention the expander idea, but it won't all be put in place until tomorrow- just wish we could get a move on....

Thanks again
Xx
alfie73
Member

Re: Devastated :(

Hi Neadi,
Really sorry to hear your news thought I'd tell you my story so far to see if that helped. I was diagnosed on the 1st August with DCIS and went on to have a mastectomy/ SNB on the 6th Sept with a temporary skin expander implant. I was offered a DIEP but due to the recovery time decided to delay it to after all my treatment which at that time I thought was just radiotherapy. However I woke up from my op and found I havd had an axillary clearance as they had found one macro met and one micro met in my SNB and Invasive BC under the DCIS and am now undergoing chemo. I am 39. I'm not sure what they will offer you in your situation but I know that at our age they are keen to blast the cancer with all they can to try and get rid of it and prevent recurrence.
My tissue expander is now fully inflated and although it is obvious when I have no clothes on when I am clothed noone realises I have had a mastectomy and are often shocked to find out. It took about three visits post op for it to be fully inflated which for me is a C cup and I am waiting to go for modelling of a silicone nipple to make that side of things look 'more normal' . I am still aiming for a DIEP in the longer term once all the treatment is over but as I also now have to have a year of herceptin (my tumour was HR+) that is in the future and I know I would presonally would have struggled if I hadn't had some kind of recon done. The side that has had the surgery is slightly more 'uplifted!' than the unoperated on side! but the surgeons may uplift that side if required in the longer term.
Has your breast care nurse shown you any before/ after photos of people who have had surgery? That really helped me ( and my husband) to make a decision. My first 'rabbit in the headlights' decision was just a mastectomy with no reconstruction but I changed my mind once I had sat with the BCN and gone through the options properly away from the surgeon.
DOn't know if any of that helps? Feel free to post any more questions I'll try and help...
lots of love and positive thoughts
xx
Neadi
Member

Re: Devastated :(

I know Lydia!! Rabbit caught in headlight just about describes how I'm feeling- not to mention wrecked as the sleeping patterns are all over the clock again!
They wanted to do the diep flap recon - the tummy one, now from what I could gather they did want to do the auxiliary clearance and because of the sheer length of recovery and chemo they are reluctant to give me that option - fear of infection or something......now this was relayed to me via hubbie, as I spent most the time with my face in a tissue!
Then radiation I think may run the risk of undoing the plastic's handiwork - my dad says I should be delighted they are being so thorough and careful, but all I see is more complicated treatment and being lopsided for a year AND then having to go back for the recon anyway! I know that they are being so kind asking what we want, but do you/ anybody know of a way of reaching compromise on this??? They've mentioned temporary tissue expanders, but even hubbie said tonight "god, I don't fancy them doing that to you....." to be honest I'd agree, as am a D and it would take a bit if stretching over time to get symmetry.
I know the aim of the game is to nuke the tumour or cells in my body, but there has to be something they can do to make this any less pleasant mentally.......I'm 37- I just want to be able to look normal 😞
chascat
Member

Re: Devastated :(

Hi Neadi
Regarding the recon I think you need to to know firstly what sort of recon and then the reasons why your surgeon is hesitant for you to have this immediately, also depending on the reasons you could also say that many women have an immediate recon followed by chemo and rads, if you're not happy you can always ask for a second opinion. You also need to establish if you'll have a full axillary lymph node clearance, this is standard procedure I believe for any lymph node involvement. In terms of the micromet, i'd ask the significance of it in respect to risk factors ie - the more lymph nodes involved the higher the risk of recurrance etc. You could ask about type of cancer, grade, whether hormone receptive but they may not be able to tell you any of that until they have the full pathology. I didn't really ask any questions as was like a rabbit in the headlights, just let my team do the talking and I just nodded a lot!
Love Lydia x

Neadi
Member

Re: Devastated :(

Ok. Tears cried, and time to move on.
Revcat, I've decided to take your advice, and thus is where I'm asking fir a bit of help. The team want myself and OH to make a list if questions / wishlist fir our treatment plan meeting on Monday afternoon and write them down. What type of questions do I ask?? I really wanted an immed recon, is there anyway around this?? Also does a / micromet mean the node is completely affected and does this alter my outcome in anyway?? If anyone else can think of any useful questions they had at this stage, it would be a great help! Ta
Xx
AnitaW_
Member

Re: Devastated :(

Hi
I'm new to this, so was hoping someone could give me some advice.
I was diagnosed with bc in March 2009. I had a mastectomy and reconstruction, I had one node involved, however they could only find 2 under my arm. This is my third year in remission. I went for my yearly check up with my onc, and she asked that I go for an ultrasound scan on my supraclavicular because she felt something there, she said they may need to do a biopsy.
When I went for the appointment they said they could see a mass there and done a needle biopsy. I get the results on Monday and i'm a bit worried that it may have come back.
Does anyone know if this is quiet a common thing. At first I did not feel anything in my neck, now I can feel what seems to be a hard lump.
For the past 3 years I have been on Arimadex and Zoladex, and seem to be getting on fine with these apart from the dreaded hot flushes.
Some advice would be greatly appreaciated.
Thank you.
Neadi
Member

Re: Devastated :(

And now sleeplessness .......I just can't sleep - in my mind this has gotten a whole lot more serious and I just can't stop freaking out....
Neadi
Member

Re: Devastated :(

Hi Lydia
Just saw your post there..
It's a mixture of stuff at the moment going on in my head
Devastation
Anger
Frustration
Fear
Grief (no kids, all our plans....only married 2 years)
Sadness ( at the unfairness and cruelty of it all- I lost my mum at 24 and really need her now 😞 )
And they just all came to the fore today with this.

But overall it's just sadness......:(

Neadi
Member

Re: Devastated :(

To be honest Revcat, after today nothing on this journey will surprise or shock me again.....I'm just going to have to take things as they come.....good or bad. Just the thoughts of this thing seeping into my system........I just want them to get it out now!! Less talk more action!!!

Xx
chascat
Member

Re: Devastated :(

Neadi
I know when I went back in for my axillary node clearance it was the same anaesthetist and theatre staff and they all told me they thought they'd seen the last of me, seems my surgeon had told them my nodes were clear and they were all desperately disappointed for me. I'm 44 and like you i'm scared, I want to see my daughter grow up, sometimes my fear is overwhelming, but it is getting easier and it will for you too. At the minute you don't know what's going to happen and your imagination will be running wild, but trust me, you will feel better once you have a treatment plan in place, you start to feel you have some control back and that helps enormously. Also I know a few ladies who've had an immediate reconstruction and then had chemo and rads, but I do also know of someone else who was refused one as she was having an implant and rads would have affected this.
Be kind to yourself, I blubbed non stop for weeks when I was diagnosed, it's good to cry, tears help to heal.
Love Lydia x

RevCat
Member

Re: Devastated :(

Ah yes. Quite a lot of people have temporary expanders put in (like an empty implant that they slowly fill with saline to stretch the skin, or fill up if you have skin sparing mx) and get really excellent results. I expect someone who has had that can tell you more about it.
Neadi
Member

Re: Devastated :(

Hi Revcat!
They said that they wanted to offer me the tummy option and the healing time between that and chemo would just be way too long. Now they're talking expander??????
I suppose Monday will bring answers but just so gutted tonight as is husband (although he's trying not to let it show)
Xx
RevCat
Member

Re: Devastated :(

Hi Neadi, I have been lurking a little on your thread as I had three affected nodes (knew I had one from the day of dx, found out it was three after surgery) but had an immediate LD reconstruction, so was puzzled by what you'd been told. Admittedly I had my chemo before surgery (I had a HUGE tumour, so they wanted to shrink it, and did so brilliantly) but have met lots of women who had their recons done immediately and then had chemo afterwards. I think the wait for chemo from surgery is typically about six weeks, so with some kinds of recon that's certainly possible. It may be that you can ask them when you next see them (after their Multi Disciplinary Team, MDT, meeting) if there really is no chance of this option for you. Can I suggest you write down your questions - if you are a fraction like me, they will fly out of your head as soon as you get into the room. As others have said, chemo is not fun, but it's do-able, and you will do it as well as anyone. I was one of those annoying 'bleeeeeeeep's who worked all through chemo - not everyone has awful side effects, but if you do, there is loads they can do yo help you.

Try to enjoy your weekend - make sure your husband buys you some treats!! Gentle cyber-hug.
Neadi
Member

Re: Devastated :(

Hi Kerry! Just saw your post. Is it weird to say I felt more devastated today than the day I found out I had cancer??

Doc said that he was reluctant to advise imbed recon, because if healing and chemo coming down the line, but to be honest I spent all the time either sobbing into a tissue or into my husband that I really didn't take much in! All my other scans came back clean as a whistle, but it still doesn't stop me from being so so scared....
Neadi
Member

Re: Devastated :(

Hi Lottie
Congrats and well done on getting through your journey. If I only knew what I was facing for sure I'd feel a bit better I think. I just think tonight's feeling is just one of complete anger why me why now?? And then today's installement to to kick me when I'm down........

It just sucks......
Kerry1981
Member

Re: Devastated :(

Oh Neadi, that's crap news! Was hoping you'd be fine.
Yoube got pretty much the same as me - 3 nodes removed, 2 with macro mets and 1 with micromet. I've just had full node clearance so have to wait and see if there are any more affected.
Have you had all the body scans yet? They might reassure you a bit.
Ive just had immediate recon despite the nodes . Seems everyone gets such different treatment
I know all about being scared - I'm scared all the bloody time - but I think they only way to cope is to acknowledge the fear and try not to jump too far ahead. One step at a time, honey xx
lottie63
Member

Re: Devastated :(

Hi Neadi,
I can understand you are devastated , I had 3/20 nodes affected and had a MRI and scan once this was discovered, my Onc ( Royal marsden ) said that at the RM they normally only do these if 3 or more nodes are found to be positive and its more precautionary , I too had a WLE and full ANC like Lydia, followed by chemo x 6 and Rads, I finished rads in september and was exhausted at first but now Im back at work part time, hairs back, eyelashes etc and Im going to Ppahos on sunday for a well deserved holiday Its hard work but its do-able .. you will have good days and bad ones but you WILL get through it, when you have a bad day come on here and have a rant it really helps to share it with those in the know,
take care , sending good vibes your way x

Neadi
Member

Re: Devastated :(

Thank you so much!!! Lydia what an encouraging post.
I actually read your post out to my husband and he said "that says it all doesn't it?"
Before today my doc was pretty certain that I would have the mastectomy (due to 2nd benign lump under my arm), and an immediate recon, chemo and escape rads

Then came the SNB.......

He took 3 nodes. The main one had what he called a macromet (2mm) the other 2 had micromets. Doc is completely flabbergasted as ultrasound and MRI hinted that things were clear and was only doing this as a precaution....

Now he has to go away and consult the team again as there has to be a plan b that he really wasn't expecting........
If he's shocked you can imagine what I'm feeling, but thanks for the encouragement........I may be 37 but at the moment am so scared I feel like I'm 5......
chascat
Member

Re: Devastated :(

Hi Neadi
My lymph nodes were clear on ultrasound but the SNB showed a tiny micromet on one of my lymph nodes. I didn't have a mastectomy but a WLE, however, I then went on to have a full axillary node clearance, the rest of my nodes were clear, chemo, rads and now tamoxifen. I was told originally that I would just need a WLE followed by radiotherapy but was also told it was dependent on the SNB. I was devastated by the results as I was so afraid of it spreading but I have been told there is virtually no chance of a micromet spreading and that does give me some peace of mind. I was told I was borderline for chemo but I wanted to have it, I needed to know i'd done everything possible to ensure it had gone and although I went into chemo with some trepidation, I was also very glad for the option. The thought of chemo is usually far worse than the reality and I coped really well with it and stayed relatively well throughout. My hair is now growing back and apart from feeling some fatigue i'm doing well, I return to work on Monday. My doctor told me that a few short years ago a micromet would not have been found and therefore chemo would probably not be offered, I'm very grateful that technology has moved on and that little fecker was detected. I know now is a horrible time for you but you'll come through it, and when you do you'll know you've had the gold standard cancer treatment and done as much as possible.
Let us know how you get on.
Love Lydia x

Sandra51
Member

Re: Devastated :(

Oh hun. so sorry to hear the news... I go in the 27th Nov and having a SNB done as well as WLE.. so I think I know how Im going to be feeling waiting for my results...I cant say anymore than Im thinking of you and im sure some ladies will post soon who are/have going through the same thing... much love hun xxx
Neadi
Member

Re: Devastated :(

Sorry if I posted that twice
Xx
Neadi
Member

Devastated :(

my SNB came back today with micromets in all 3 nodes. Needless to say I am completely devastated. Even my doc didn't know what to say except it's goodbye immediate recon, and hello chemo and radiation. I just wanted to see if there was anybody out there who had a similar disappointment
Thanks
Xx