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Lisa_x
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since
01-05-2012
333
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5
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yesterday
I don’t know the answer but my oncologist is looking in to for me. I’ll let you know if I get a definite answer. I am given different advice from different medics. I had all nodes out on right side and have mild lymphoedema. A sentinel node biopsy on the left and cording means both arms are out for bloods but there a different views on taking bp. I had bp taken on my leg when on a ward. Supposedly bp on legs gives a much higher reading. At a recent pre op assessment, they had to look at taking on somewhere else as the reading was sky high. They took it on right forearm because they said my surgery was more than 3 years ago? First time I had heard that.
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yesterday
2 Hugs
Good morning, I hope it’s ok to jump in. I started chemo on 1 Feb. I had BC in 2011 and was diagnosed with a new primary in November and had lumpectomy and snb. I had a complication with a massive hematoma and needed further surgery which took a while to recover from. It was a small cancer (12mm) and I was hoping to avoid chemo but….it was grade 3 and her2+ so chemo it is. I’m having 12 weekly paclitaxel and have a port and it wasn’t as bad as I feared. Feeling very lucky so far. But oh my goodness….the scalp cooling…..it’s something else. The pain was intense for about 5 or 10 mins. I almost asked for it to be taken off. I cut my hair in a bob before chemo and hoping that the scalp Cooling works and I get to keep my hair. with love and best wishes to you all. Have the best day you can xx
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29-12-2022
07:57
Hi, I had reconstructed nipple and then had it tattooed. This was about 7 years ago. The nipple has got smaller over time and the tattoo has faded but I am really happy with it and will have it tattooed again to deepen the colour. goos luck with whatever you decide xx
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28-12-2022
07:16
1 Hug
Thanks for taking the time to reply Jan, I really appreciate it. When I was first diagnosed again, I was dead set against not having chemo. I managed to get through 3 cycles of FEC and then 3 cycles of T but like you, I had neutropenic sepsis and the anti sickness sickness drugs weren’t enough for me and I was hospitalised for IV anti sickness drugs. I found it really tough although I managed to work intermittently through about 2/3 rds of chemo. I had a chat with my breast care nurse today. I can’t believe I forgot to ask the grade at my last appointment and I found it is grade 3 when the biopsy was grade 2. I kind of feel that chemo will be recommended so I want to get my head around it a bit more and start to plan for it. BCN also said that weekly chemo would be more tolerable than the regime I had before although I do appreciate that everyone has side effects to different degrees. I understand also that GCSF is given as standard now when I only had it after I had neutropenic sepsis so that’s good. how are you doing now that you’ve finished your chemo?
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27-12-2022
11:49
Is the pain all over and in your joints? From my experience, it was normal for me. It will get a bit better in the next few days. Can you speak to your GP and get some more pain meds? I remember taking paracetamol, ibuprofen and codeine. A warm bath might help too and if you can bear it, maybe a little walk? I hope the pain subsides for you really soon x
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27-12-2022
11:45
1 Hug
Hi! I’m Lisa and have a 2nd breast cancer. My first was 12 years ago, er and her 2 positive, 76mm plus DCIS and I had successful treatment including chemo, radio, herceptin, tamoxifen, mastectomy and DIEP recon. I have been diagnosed with a new BC in my other breast and had surgery a few weeks which was successful with clear margins. I had a massive hematoma that needed emergency surgery but that’s another story and I’m still traumatised about it. This time the cancer is much smaller 12mm and no node involvement. I have had genetics tests and am waiting for results and surgeon has recommended that I speak to oncology team about pros and cons of having chemo. I get a feeling that it’s not a clear cut yes, I should have chemo and I’ll need to make a decision weighing up pros and cons. I don’t know yet what the stats are but I know that if I do have chemo it will be weekly chemo which I have been told is less aggressive than FEC T which I had 11 years ago? Can anyone help me and let me know honestly what the side effects of weekly chemo are? Sorry I don’t know which type it might be. It would be really helpful to understand the side effects before I meet the oncology team so I can factor this in to my decision making. thank you for taking the time to read this. Lisa
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28-05-2013
11:39
Hi,
Sorry I haven't noticed this post before. I had mx and went on holiday last year. I bought a swim prosthesis from Nicola Jane, about £10. It was sponge like and they come in sizes. I thought it was pretty good but you do need to give it a discreet squeeze when you get out of the water. I didn't buy a mx swimsuit. I got one from Debenhams, about £30 and one from AAda for £10. They were both straight across the chest and had a built in shelf bit which held both boob and prosthesis in place. I bought a size bigger than normal so I could pull it up high. My size was about 38 E at the time. If you do buy a swim prosthesis, think about getting 2 as I found that after 2 weeks holiday, the prosthesis shrunk a bit (I did wear it for 2 weeks and was in and out of the sea/ swimming pool)
Happy Swimming!
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25-05-2013
01:56
Dee dee,
In some ways it's good to have chemofirst. You'll be able to fully research your options for mx and any reconstruction.
All the best honey x
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25-05-2013
01:46
Hi,
I've had 2 seromas, one after mx and I would describe exactly as you have, like a hot water bottle. I didn't have it drained and it settled down after about 1 month (I had rads on the area 5 weeks after mx).
I had the other seroma after my diep recon on my tummy and it was under my diep scar. It was quite gross as it leaked out of thescare. I had this drained once and they didn't want to do it again because of the risk of infection. That seroma settled down after about 8 weeks. I did wear big supportive pants which helped I think. I found it was better in the morning and quite uncomfortable at night. Have you tried awearing something tight and supportive across your chest? Maybe a stretchy Lycra type vest, like a sports one? Xxxxx
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19-05-2013
11:38
Hi Undecided,
I don't think I've seen anything about lump vs mx. For me I wasn't given an option. I had initial surgery but was then told I would need a mx. I then decided to have Chemo before mx. My reasoning for this was that I had lymph involvement and thought that if the cancer cells had acquired the ability to move to my lymph nodes, they coulwe'll be on the move elsewhere. I wanted to get on to systematic treatment ASAP. Chemo worked very well for me, when I had a mx, there was no evidence of any cancer and nothing more in my nodes.
Good luck with your decision. It's a very diffult one.
Lisa xxxx
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18-05-2013
03:08
Hi DeeDee,
I had initial surgery and the a mastectomy and nodes removed and also a reduction on my good side. That was about a 4 hour op. I had delayed reconstruction and had a prosthesis. I hada initial reconstruction 18 months later. There are many reconstruction options and you'll need to discuss these with your surgeon. Tissue expanders are quite a good idea as they are temporarypans you can at a later date have them replaced with your own tissue or implants.
It's a really big decision and so many things to consider. I wasn't happy wearing a prosthesis and couldn't wait for my reconstruction. Everyone is different and immediate recon wasn't recommended for me. Whether you'll be having radiotherapy will also need to be considered.
Good luck with your decision xx
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18-05-2013
01:27
Dear Marleypop,
I think it's pretty standard to have CT and bone scans. I had both after surgery and before chemo (I had spread to my lymph nodes). I thought I had to wait until my next appointmenttot get my results and it was an awfully terrifying time. When I got to the appointment I had yo ask for the results and they said 'hasn't anyone given them to you yet? I wasn't aware I could rueful for results. I reallywish I had known as itwood gave stopped me being so anxious.
Have you got a breast care nurse? You should be able to get the results via her? They won't give results on the day as the radiographer are not allowed to diagnose. They generally get sent to the Oncs to review probably likely to be a few days after the scans that the results are available. Chat it through with your BCN and she'll be able to tell you what happens at your hospital.
By the way, I was dx in Dec 10 aged 39. I had mastectomy chemo rads and herceptin. I'm still on hormone treatment. Nearly 2 and a half years on and I'm doing fine. Very well in fact!
Good luck with your chemo. Drink lots of water before and after and rest lots!
Lisa x
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03-04-2013
11:24
Hi,
My periods stopped after my 2nd FEC and returned 2 months after starting tamoxifen. I have had zoladex injections monthly since then to shut my ovaries down. The jury seems to be out on whether having both zoladex and tamixifen gives added benefit. There is an ongoing trial and the results should be out at the end if this year. I took the decision to have zoladex as my cancer was aggressive and I'm at high riskorg recurrence. I'll know once I've finished the 2 year course if zolafex if it's added any benefit. A friend of mine chose not to have zoladex after seeing 3 different Oncs that didn't recommend zoladex. As I said, the jury's out on this but it might be worth investigating further/discussing it with your Onc.
All thE best xxxx
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03-04-2013
10:43
Hi Littlescoot,
You're not alone honey. I had 76 mm grade 3 and 90+ mm of DCIS. I was diagnosed in Dec '10. I remember looking at sizes of tumours in a BC booklet and pan I had a mx and am doing very well; I had a reconstruction in October 2012 and am back at gym and feeling really good about my life. There are do many factors to consider whenconsidering prognosis. I have used predict but it diesn't take in to consideration all factors. Sending you lots of positive vibes xxxx
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03-04-2013
10:42
Hi Littlescoot,
You're not alone honey. I had 76 mm grade 3 and 90+ mm of DCIS. I was diagnosed in Dec '10. I remember looking at sizes of tumours in a BC booklet and panicked as mine was off the scale. I didn't know the true size until after my first operation. From the scans, they thought it was 5cm. I had a mx and am doing very well; I had a reconstruction in October 2012 and am back at gym and feeling really good about my life. There are so many factors to consider when considering prognosis. I have used predict but it diesn't take in to consideration all factors. Sending you lots of positive vibes xxxx
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03-04-2013
10:21
Hi Buzzy,
I was really lucky with my diep. I was told that I couldn't have diep until at least a year after radio finished. I asked for a referral to plastics just after rads had finished and was put on the waiting list in April 2012 so that by the time I got to the top of the list, the year would be up. I actually finished rad's mid Sept 2011 and had my diep Oct 2012. My friend who finished her rads at the same time as me had her diep 3 weeks ago and we were tretins at the same hospital. I'm in S London/Surrey. Hope you get your op soon xxxx
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03-04-2013
10:02
Hi Ladies and thank you all for posting. Sorry it's taken me so long to post again. I only have access via my I phone so it's a bit of a nightmare.
I feel so much more confident about the fat transfer to gain symmetry. My new boss is cool about the ops and hasbeen so supportive. I am going to take each op as they come. I have my first op in 2 weeks, yikes! I was offered the date today when I phoned my consultant's secretary. Initially she told me that there were 130 of these ops ahead of me. I said that can 't be right as Mr R said I'd waited a long time already and would have an app't in 4 to 6 weeks. She said she'd look into it and then came back to me with an appointment on 19th. I'm actually really excited about it.
Thanks again ladies xxxx
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13-03-2013
08:55
Hi,
I had s mastectomy in July 2011 and DIEP recon 5 months ago. My new boob is just ever half the size of my good boob. I had a really distressing appointment 3 weeks ago when I wasn't given any options for gaining symmetry. Ihave since seen my own consultant who said he was hoping to get more volume and we agreed on a plan going forward. I will be having fat transfers, possibly up to 4 of them, 3 months apart and then when I have the volume I am happy with, he will reduce the good boob to match. It's hard to get my head round this as I believed Iwould have one op to gain symmetry. What I am worried about the most is the recovery time after each op. I have been told it's day surgery and that some women are back to normal 2 to3 days after the op and for some it's about a week before they are back to some normality. I am really keen to minimise the time off work. I start a new management role in May with a new manager. Am I kidding myself that I could be back to work after a couple of days? Has anyone got experience of getting back to work quickly? I'm meeting with my new manager on Monday and should have an appointment for the first fat transfer in about 6 weeks, eeek!
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22-11-2012
11:03
Hi Rachel,
Sorry to hear you are not happy with your recon. I had my diep recon 6 and a half weeks ago and hade a follow up appointment today. I was told that my recon will settle a droliver the next few months. They will see me in 3 months for further review and to plan next steps (I'm hoping for some more volume and a reduction on my good boob). I used to have huge boobs but was always able to get my arms by my side. I totally understand the feeling you are talking about, I have it too but it is getting less like a tennis ball under my arm pit. I had my blood vessels attached under my armpit so this probably adds to why it's swollen and remember it's major surgery we've had and will take time to settle. Have you started to massage the area? I've got some hard areas and was told today that they can take months to soften. I'm not wearing under wired bra's yet, way too uncomfortable! I bough a cheap vest type sports bra from Primark and it's comfy. Genie bras are supposed to be fantastic.
Give yourself some time honey. It really is early days
Best Wishes,
Lisa xxxx
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