Member Since: April 8, 2008
Last Login: December 2, 2008
Birthday: June 24, 1962
Location: United Kingdom United Kingdom
Occupation: Nurse
| Diagnosis: | Dx 3/11/2008, DCIS, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+, HER2+ |
| Diagnosed: | March 11, 2008 |
| Type: | Ductal Carcinoma In Situ |
| Recurrent? | Local recurrence (in the breast where it started, or in the skin and underlying tissues where the breast used to be) |
| Metastatic? | |
| Stage: | Stage 0 |
| Lymph Nodes Removed: | 0 |
| Positive Lymph Nodes: | 0 |
| Tumor Size: | Less than 1cm |
| Tumor Grade: | Grade 1 or low grade |
| Hormone Receptor Status: | Tumor has both estrogen and progesterone receptors |
| HER2/neu Status: | Tumor has an excess of HER2/neu receptors or genes |
Posted in:
Tests, Treatments & Side Effects + Breast Reconstruction, Created: 12 hours ago
And now I've been deconstructed!!!Hi Cathy, Just to say I'm an RN too. I work in a Doctor's surgery so not as physically demanding as working in a Nursing home but there's no way I'd have been ready to go back to work after 8 weeks. Even after 18 weeks I wouldn't have been ready. With the expanders out I'm thinking I'll go back to work in the New Year. Everyone's different and we all need to heal at the rate our bodies are happy with. Incidentally I have a VERY high pain threshold normally so for me to admit to being in pain had my husband seriously worried!!! Trudie Dx 3/11/2008, DCIS, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+, HER2+ |
Posted in:
Tests, Treatments & Side Effects + Breast Reconstruction, Created: Nov 30, 2008 03:46 pm
And now I've been deconstructed!!!After 18 weeks of constant pain since having bilateral mastectomy and reconstruction using tissue expanders I'm glad to say that on Friday November 28th I had the op to remove them. I think it took around an hour but with being in Recovery it seems longer. As soon as I was back on the ward I was aware that the awful tight feeling in my chest, that hadn't reduced even slightly in the intervening time, had gone. Yesterday I felt as though I'd been run over by a truck and generally unwell but by the time I woke up this morning I was painfree TOTALLY for the first time in 18 weeks. I'm amazed at how much easier I can move around and I feel remarkably well. I have no post-op stiffness like I had when I had the expanders put in and I can only say that I feel like my old self again. There is some fluid still under the skin and I can feel that "slosh" around occasionally so I hope they'll drain that if it's still there at my post-op appointment. The Surgeons think that the skin will shrink back to how it was before as I hadn't much done in the way of expansion (200mls in Theatre) but if it doesn't they will tidy it up in about 6 months time. I am disappointed that for me reconstruction doesn't seem to have worked. I'd thought long and hard over which op to go for and wanted one with minimum recovery time which was why I chose implants. BUT, now I feel well again and I know I couldn't carry on with the constant pain and I was spiking temperatures too which my Consultant felt was due to either a low grade chronic infection or an inflammatory response to the expanders themselves. Eirher way, my husband says he's just happy to see me looking so well so soon and able to move around without wincing. For me, having the expanders removed was the right decision, now I can get on with the rest of my life and prostheses and pocketed bras seems a small price to pay to have my health back. Trudie Dx 3/11/2008, DCIS, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+, HER2+ |
Posted in:
Tests, Treatments & Side Effects + Breast Reconstruction, Created: Oct 27, 2008 05:59 am
I'm being deconstructed!!!Hi Sandy, My Consultant at the Royal Marsden is Fiona MacNeill. She's lovely and I can't speak highly enough of her. I really think that she wants only the best for her patients and isn't taking my decision personally at all. Try and see her if you can. Trudie Dx 3/11/2008, DCIS, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+, HER2+ |
Posted in:
Tests, Treatments & Side Effects + Breast Reconstruction, Created: Oct 22, 2008 10:29 am
I'm being deconstructed!!!I went back to the Royal Marsden yesterday to see Miss MacNeill and after numerous problems since my bilateral mastectomy and immediate reconstruction with tissue expanders we've reached the decision to remove the expanders. My original surgery took place on 23rd July (13 weeks ago) and I still have as much chest tightness and discomfort as I has immediately post-op. I've had 2 infections, one on each side, and the left hand implant moves constantly catching on my ribs and making them feel bruised.
4 weeks ago Miss MacNeill said that she didn't feel the left hand implant would settle without further surgery and to wear a sports bra 24/7. This hasn't made any difference. Last week I felt as though I had another infection brewing but my G.P could find no signs of infection in the wound, the implants or anywhere else in my body and said that he felt my body is seeing the implants as a foreign body and reacting as such, i.e. causing me to spike temperatures and feel unwell. Miss MacNeill agrees with him and said that she has seen this happen 3 or 4 times in her career where a patient develops and inflammatory response to the expanders or a chronic sub-clinical infection that can't be detected by normal means such as blood tests. In thses cases she said that it's remarkable how quickly the patient feels better after surgery to remove them. My surgery is booked for November 28th and I'm relieved that I won't be in pain any more but disappointed too. I thought long and hard before opting for this surgery as I felt that it would give me the quickest recovery time of all the reconstruction options but at least I tried. Trudie. Trudie Dx 3/11/2008, DCIS, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+, HER2+ |
Posted in:
Tests, Treatments & Side Effects + Breast Reconstruction, Created: Oct 8, 2008 03:26 am
Has anybody had further surgery to hold their expander in place?We don't have Alloderm here in the UK. I'm fed up as the left one's drifting into my armpit and the right one's infected now!!
I didn't think it'd be like this.Trudie Dx 3/11/2008, DCIS, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+, HER2+ |
Posted in:
Tests, Treatments & Side Effects + Breast Reconstruction, Created: Oct 7, 2008 05:34 am
Has anybody had further surgery to hold their expander in place?Hi everyone, I'm now 11 weeks post-op following Bilateral Mastectomy and Immediate Reconstruction using tissue expanders. The immediate post-op discomfort hasn't lessened that much, in fact I'm still on Tramadol and Lorazepam regularly!!
3 weeks ago at the Royal Marsden I was told the pain is being caused by my left expander moving!! The Consultant was able to move it with her hands and that reproduced the pain I've been getting in the ribs. She doesn't know why this has happened and quite honestly told me that she doesn't have any magic solutions for me. She suggested I try wearing a tight fitting sports bra 24/7 until my next appointment and see what happens. I went back yesterday as my right expander has swollen up a lot and it turns out there's an infection on that side so I'm now on antibiotics but Miss MacNeill said that she doesn't think the expander on the left is going to settle without further surgery to make the pocket smaller. I wondered if anybody else has had this done and if so what it entailed? As my chest is still too tight to drive wouldn't this make it feel EVEN tighter? Anybody got any ideas? Trudie. Trudie Dx 3/11/2008, DCIS, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+, HER2+ |
Posted in:
Tests, Treatments & Side Effects + Breast Reconstruction, Created: Sep 21, 2008 06:03 am
continued Tissue expander pain!!My Surgeon started me on Lorazepam which has really helped with the chest tightness. Hasn't stopped the implant moving around any though which is causing me a lot of discomfort. Trudie Dx 3/11/2008, DCIS, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+, HER2+ |
Posted in:
Tests, Treatments & Side Effects + Breast Reconstruction, Created: Sep 18, 2008 06:48 am
My expander is moving!! Oww!!!I saw my Surgeon 2 days ago that's how I know the expander is moving. How did you know your muscle had pulled away? I know that not all of the muscle is covering mine as they found the muscle wasn't very deep when they opened me up. Trudie Dx 3/11/2008, DCIS, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+, HER2+ |
Posted in:
Tests, Treatments & Side Effects + Breast Reconstruction, Created: Sep 18, 2008 05:09 am
My expander is moving!! Oww!!!Thanks Erin, nice to know I'm not alone in this. I'm doing all my exercises and stretches but find that when I stretch the expander moves!! It moves when I get in and out of the bath, and it was moving just now every time I bent down to put clothes in the washing machine!!! I've had no fills yet and they don't have any plans to start with the filling until this movement has stopped. Have you got your permanent implants now? If so, can you still feel them against your ribs? Trudie. Trudie Dx 3/11/2008, DCIS, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+, HER2+ |
Posted in:
Tests, Treatments & Side Effects + Breast Reconstruction, Created: Sep 18, 2008 04:46 am
My expander is moving!! Oww!!!I'm 8 weeks post-op following bilateral mastectomy and immediate reconstruction with tissue expanders. The discomfort isn't really lessening, in fact my Consultant increased my pain medication 2 weeks ago and started me on Tramadol and Lorazepam which makes me feel sick so I'm now on anti-emetics too!!
I went back to the Royal Marsden hospital on Tuesday and it turns out the pain is being caused by my left expander moving!! Can you believe that? I couldn't when the Consultant told me but she was able to move it with her hands and that reproduced the pain I've been getting in the ribs. She doesn't know why this has happened and quite honestly told me that she doesn't have any magic solutions for me. She has suggested I try wearing a tight fitting sports bra 24/7 until my next appointment in 4 weeks and see what happens. The right hand implant is nicely in place where it should be but for some reason the muscle on the left hasn't contracted around the expander. At least I now know why which is something but if it doesn't settle and I'm unable to live with the pain the only option will be to take the expanders out. I hope it does settle but wonder if anybody esle has experienced this? Also how long would be too long for me to be saying I can't bear this feeling of "it" moving and grating against my ribs whenever I move? Trudie Dx 3/11/2008, DCIS, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+, HER2+ |
Posted in:
Tests, Treatments & Side Effects + Breast Reconstruction, Created: Sep 6, 2008 08:29 am
continued Tissue expander pain!!I've been feeling unwell recently. I spiked a temperature and the pain in my left ribs seemed to get worse after that. They wanted to admit me for IV antibiotics but i was so upset my Consultant compromised with oral meds and an ultrasounf which didn't show any infection. My pain medication has been increased to Tramadol and Lorazepam but they make me nauseous so I'm now on anti-emetics to deal with that. Here I am almost 7 weeks post-op and I'm still uncomfortable. I spoke to my breast care Nurse on Thursday and she said it's unusual to still be this uncomfortable at this stage. She also said that some women are left feeling able to feel their implants permanently. I didn't want to hear that at this stage as I'm not doing that well to be honest!!! Has anybody else heard this? Trudie Dx 3/11/2008, DCIS, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+, HER2+ |
Posted in:
Tests, Treatments & Side Effects + Breast Reconstruction, Created: Aug 24, 2008 11:18 am
continued Tissue expander pain!!Has anyone ever opted to have the expanders remooved?? Trudie Dx 3/11/2008, DCIS, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+, HER2+ |
Posted in:
Tests, Treatments & Side Effects + Breast Reconstruction, Created: Aug 24, 2008 11:15 am
continued Tissue expander pain!!Hi everyone, I had bilateral mastectomy and reconstruction using tissue expanders on July 23rd so am nearly 5 weeks post-op. Since the surgery I've had a REALLY tight feeling just under my bust, around my ribs, like I'm wearing a bra that's about 3 sizes too small. I can also feel the implants against my ribs and if I move in certain ways they dig in and cause my ribs to feel bruised. When I try to lie flatter than propped up on 5 pillows, including a V pillow that tight feeling gets even TIGHTER. I HATE the way I feel now and can't help feleing that I should have just had the blateral mastectomies and been done with it.
Trudie Dx 3/11/2008, DCIS, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+, HER2+ |
Posted in:
Tests, Treatments & Side Effects + Breast Reconstruction, Created: Aug 20, 2008 05:38 am
Well, at least the sex is back to normal!Hi suemed8749, I'll just bet that's where they are!!! I'm surprised that I have quite a bit of sensation but it's weird, I could draw on myself where I have sensation and where I don't. My expanders don't feel that hard at the moment, perhaps because I've only got 200mls (200ccs) in each and haven't had any more added yet. Trudie Dx 3/11/2008, DCIS, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+, HER2+ |
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Tests, Treatments & Side Effects + Breast Reconstruction, Created: Aug 18, 2008 04:55 am
Well, at least the sex is back to normal!Hi Hannahbanana and Journey, I am having trouble with my altered image and like you, Journey, I was scared of losing my nipples as they gave me so much pleasure during lovemaking BUT as my husband said pre-surgery and keeps saying since we can find other ways and other parts of me that will bring something new to our love life. He reassures me constantly and says that "they" look great this soon after the surgery which helps. I feel kinda weird and self-conscious about them as though they're not mine and I feel how I imagine I'd have felt as a teenager if they'd suddenly grown out of nowhere!!!
That was never an issue as when we met I was all but flat anyway!! Can't wait til all the discomforts are gone and I feel back to normal in the rest of my life!!!Trudie Dx 3/11/2008, DCIS, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+, HER2+ |
Posted in:
Tests, Treatments & Side Effects + Breast Reconstruction, Created: Aug 17, 2008 12:31 pm
Well, at least the sex is back to normal!I had a bilateral mastectomy with immediate expander reconstruction on July 23rd - 3 weeks and 4 days ago. I'm GLAD to say (firstly) that my husband still fancies me - like mad - and also that despite losing my nipples (how careless) our sex life is back to it's pre-op highly satisfactory state. I still have tightness under the bust and various other bits of discomfort besides but I'm sure glad to have that part of my life back to normal.
Trudie Dx 3/11/2008, DCIS, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+, HER2+ |
Posted in:
Tests, Treatments & Side Effects + Breast Reconstruction, Created: Aug 17, 2008 12:16 pm
Is this normal after bilateral mast and recon?Hi there everyone and thanks for all the positive support. I'm now able to sleep on my side for short periods and am able to lie on only 2 pillows - after only 3 weeks and 4 days!!! I'm so glad that the sensations get better as I've had a few nights where I'd gladly have had them removed again!!!! Just wanted to add - Histology results showed extensive LCIS throughout both breasts, DCIS in the right and the ALH (Atypical Lobular Hyperplasia) in the Left breast had already progressed into ADH (Atypical Ductal Hyperplasia) so I'm certain I made the right decision. Trudie Dx 3/11/2008, DCIS, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+, HER2+ |
Posted in:
Tests, Treatments & Side Effects + Breast Reconstruction, Created: Aug 10, 2008 11:14 am
Is this normal after bilateral mast and recon?I had bilateral mastectomy and reconstruction using tissue expanders on July 23rd so am nearly 3 weeks post-op. Since the surgery I've had a REALLY tight feeling just under my bust, around my ribs, like I'm wearing a bra that's about 3 sizes too small. I can also feel the implants against my ribs and if I move in certain ways they dig in and cause my ribs to feel bruised. When I try to lie flatter than propped up on 5 pillows, including a V pillow that tight feeling gets even TIGHTER. Does anybody else have this feeling?
Right now I feel as though my body will never feel normal again as the implants feel huge and I can't bend easily at the waist as they feel as though they're sitting right at the bottom of my ribcage. The implants I have can take another 450mls of saline and I'm worried that they will cause me to have back and shoulder pain as surely that'll be quite heavy to carry around. Perhaps I'm just feleing sorry for myself but at the moment I'm SO uncomfortable and SOOO tired as I'm unable to sleep for longer than an hour at a time and I can't even get comfortable enough to doze during the day. Trudie. Trudie Dx 3/11/2008, DCIS, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+, HER2+ |
Posted in:
Connecting With Others Who Have a Similar Diagnosis + DCIS (Ductal Carcinoma In Situ), Created: Jun 9, 2008 08:21 am
Immediate ReconstructionHi there Sunkist and Keryl, My situation got more complicated. My MRI showed "something" in my left breast too which has been biopsied and shows as Atypical Lobular Hyperplasia, so it's not cancerous but isn't normal and COULD turn cancerous. My Surgeon recommends a bilateral Mastectomy with Immediate Implant Reconstruction - I don't have enough tummy to do both with a DIEP flap!! She says the decision is entirely mine, if I want to just remove the right breast and go for DIEP flap she'll do that but in her opinion I'd get a better result cosmetically doing both now with implants. I'm swaying towards that now. My husband says let's just go for it and then all the element of risk is removed. But I still feel sad at losing both my breasts. Trudie Dx 3/11/2008, DCIS, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+, HER2+ |
Posted in:
Tests, Treatments & Side Effects + Breast Reconstruction, Created: May 30, 2008 10:21 am
Sensation with implantsHi, I've been told that although they will use the skin sparing technique they won't spare the nipples as that's too risky with DCIS due the ducts opening into the nipples. Trudie Dx 3/11/2008, DCIS, <1cm, Stage 0, Grade 1, 0/0 nodes, ER+/PR+, HER2+ |
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