Hi ladies..things seem to be a bit qiet on here lately...i do hope everyone is ok. I had hoped for an improvement in my pain etc but still in a mess. Am really down again,,can't seem to stop crying. Apart from the pain of the ECT i seem to be having breathing difficlties,,dont sem to get enough breth and then very wheezy when i exhale...scared now that my lungs and heart are affected.
Anyway.. a qick catch up...i saw my dermatologist on Monday and she gave me antibiotics. She is of the opinion that if a wound smells it is infected. I saw the trials dr on Tuesday and she reassurred me that there will always be some trial or othrer they can get me on. I am now thinking that i would like to do this asap before i deteriorate and cant have them.I then went for a wound check and dressing change (did i tell yo the iodine dressing recommended by the surgeon stuck to me...took the district nurse nearly an hour to soak it off...dont need to tell you how painful that was!!). I saw a CNS who was lovely..had me crying and laughing at the same time: both him and the nurse insisted on delaying their breaks until they had treated me...fantastic.
They used a silver and charcoal dressing which has again stuck so back to the old urgotol.They did all say i should have a shower to get rid of the slough?? so that new skin could grow..which there is apparently evidence of. The surgeon didnt seem so keen this time on more treatements and advised me to go for trials as ECT is only palliative and with trils there is a chance of remission...again two opposing schools of thought. My big concern is that i cant go on trials till my skin has healed and thats not likely to happen to the ulcerated areas. I am also convinced that the cape isnt working and i know there aren't many things left.
I do wish i could come on here with some good and positive news... i always feel like i am moaning...i just want to tell everyone eveything in case any of it can help others.
Huge cyber hugs to you all.xxxxx
Stresshead, I just quickly checked the thread and was so pleased to read your post. It sounds so positive!! You have been in pain, but hopefully the oramorph will help there. The dressings and cream will surely help too. But the main thing is the surgeon's response being so positive. In the end it was all worth it. Well done! If you need more treatments then so be it..........but there will be painkillers to help in future, now they know you need it. And who cares if it works?
It is so heartening to hear good news, particularly from someone who has had to struggle. You have waited a long time, but now things are moving. You've been a pioneer! And thanks for sharing it so that we all know more about this electrochemotherapy. Knowing your story gives us all a boost.
Take care, and relax for a bit. You deserve it.
Yay, Stresshead - ditto Barton and Marirose's comments - that sounds like a very positive response, particularly if it generally takes about 4 to 6 weeks to show an effect. Perhaps you have so much pain because of the cancer cells dying - I've heard it said before about pain caused that way. It's good to see you get a nice bit of uplifting news, you certainly deserve it.
What great news at last something to feel positive about I am soooo pleased for you. Sorry you have to go through the pain but at least they have given you something to help with that and the cream and iodine for the soreness. It is certainly a treatment to consider if you are lucky to get it. They seem to now be helping you and about time.
Big Cyber ((((hugs))))
I am glad you are feeling more positive today after your surgeon meeting. It's really distressing feeling so down isn't it? Good on him for saying that! I hope the pain is a little better today for you.
Ladies, thank you so much for your kind words and encouragement..i really don't know what i'd do without you all. A quick update on yesterday.
The nurse took all the dressings off and when the surgeon came in he put some gloves on and just stared..which really freaked me out. I asked if this was normal and he said everyone reacts differently which again didn't fill me with confidence. Then he said words to the effect of 'its too early to say but that is what i would expect with the tumour being killed'....i could have kissed him!!! He did then say i would need more treatment but they would give me extra painkillers next time. I really didnt want to go through this again but like us all, if it shows a positive result then we'll go through anything.
They have given me iodine dressings and skin cream and aslo prescribed oromorph so hopefully things will improve. He said the treatment takes 4-6 weeks to show an effect so everything is crossed in the meantime.
I am also back at the trials clinic next week so i'll update you on that too.
Thank you all again for your support...you are all true friends. Much love xxxx
Hi Stresshead - sorry you're having a hard time. Just post if/when you feel up to it. The loss of Wolfie and Bumpkin in such a short time certainly has knocked me for six and I think of them constantly. We'll be here but will be thinking of you whether you're posting or not. Wolfie and Bumpkin certainly would want you to stay positive and keep fighting - as do we all. We right here, spurring you on. The treatment likely just needs a bit of time to begin to feel the benefit, but it must be very hard to cope with the severe pain.
Mo - I read the other day about a lady who had radiotherapy who thought it hadn't worked at first and was in great pain but then found that it took away the pain, given time. I wish I could remember the thread.
Hang in there both and hopefully it will be very effective, very soon.
Hugs to all the ladies.
Yes, stresshead, I agee with Marirose, just stick in there. You have been so brave and resourceful so far. These things can take time.......which is easy for me to say I know, because it is you who have had to go through the pain. But we all offer our spiritual hands to help you along.
I am really also saying thank you for giving us an update.......electrochemotherapy could be an option for others here, so I should think everyone is interested. and interested in YOU too! Now we all have fingers crossed about tomorrow so update us when you feel up to it. Good or bad, we like to know how you are doing. We are all on a journey we didn't expect.
Mo update..........It is 3 weeks since my radiotherapy at the Churchill. it didn't seem to make any difference so bit depressing, but after 2 weeks I think i could see tiny shrinkage. I haven't even looked at it for a week! Aren't we funny? i just slap on the cream and get dressed! i have a scan to check inside on Wed, then see the onc on April 5th. It seems a long time post radio, but planned as post radio so I am hoping he thinks it will take time.
That's just an update. I wonder if anyone else might have radio as a possibliity? Anything is worth a try. But you have to be like me and never had radio before. I didn't have it with my primary.
Take care, stresshead. We are thinking of you. I light candles in my church for my parents, and will light one for you today. Not a lot, but it will make a little light shine just for you! Lovely sunny day here, in Bucks, which gives a boost. Could you sit somewhere warm in the sun later? Sorry, but I ramble on...........
I knew you were not quite right I am so sorry you are going through it right now and can only hope it gets better. Sending ((((hugs)))) and love.
P.S just seen pm will send one back
All I can say to you is hugs and kisses and I know everyone is thinking about you. Stay strong and hopefully this treatment will start to kick in soon and you will benefit from all the painyou have had to go through.
Hello LAdies, dont really feel like posting at the moment in light of recent developments but think it only fair to let you know how i got on with electrochemotherapy as you have all supported me along the way.
Had the treatment on 3rd March.Had general anaesthetic and was in theatre for about an hour. when i came round i was in so much pain all i could do was cry...think a lot of it was the fact that i had been waiting for so long and pinning a lot of hope on it working. I had loads of morphine and was ok for a few days. After that i can only describe the next few weeks as a total nightmare. The pain has been worse than my bilateral mastectomy and diep reconstructioon. I had every area done (abdomen, chest and back) as well as a node in my neck which had appeared a few weeks previous (which leads me to believe cape isnt working, especially as my TMs have been rising steadily). The wounds are very sore and itchy and have lots of leakage which is horendously smelly ...sorry to be so graphic. I went back to hospital last Tuesday for re dressing and was told it was all perectly normal. I go again tomorrow to se the surgeon but i'm not sure this is all 'normal'....will just have to wait to see what he says. All i know is i cant remember having so much pain or being so 'low', all componded by the news about Wolfie and Bumpkin. I know they would want us all to remain positive and keep fighting so thats what i'll try and do. I'll let yo know how tomorrow goes. Much love to all. xx
I dont believe this is happening......first Wolfie now Bumpkin. Yet again she was a true inspiration to me. It was due to her i followed up leads on treatments etc which have most likely helped to keep me here..i will miss her so much. Thanks DBNO for letting us know. Heartfelt sympathy to Bumpkins family and friends. x
Hi ladies. I'm so sorry to hear this latest news about bumpkin and also ladywolf (Corinne). What a terribly sad time for you all, and for all ladies on the forum, especially the secondaries part. It really has been a very upsetting time recently with so many of our friends succumbing to this horrible disease. I hope we can all continue to support each other, share good and bad news and try to have as good a time as we possibly can depending on what our treaments are chucking at us! I'm sure that is what our dearly departed friends would want, I know I would.
So sorry to hear this news, I've had a feeling for a while that the next time we heard about her it wouldn't be good news. We all try to jolly each other along as best we can but as I said before this makes it all so real.
Thankyou so much DBNO
I would so like so much for you to mention how much she ment to us I have missed her so much since November.
Love Rose xxx and (((((hugs))))) from me
Ladies (and BCC) I will pass on your condolences to Bumpkin's family. Her husband said if I wanted to send some words about her he will read it out at her funeral on the 22nd. I thought I'd say something from myself but will also write how much she meant to you all - though I have already told him how much she helped us.
Marirose, I know just what you mean about it bringing it home to us. Our world has a large void without Belinda, Wolfie, Bumpkin and all the other ladies we've got to know and care about on this Forum.
Sending you all a big hug.
So sorry to hear about Bumpkin. As Marirose says, our little gang is shrinking. We have lost such good, kind sisters so suddenly. I send all my sympathy to Bumpkin's family. I had been thinking about her recently........where was she? Well, she is safe now. But she will be missed by those still here.
We are very sorry to hear about Bumpkin passing and behalf of the moderation team we offer our sincere condolences to her friends, family and all that knew her.
She truly was an amazing support to so many women on this forum and I am sure she will be deeply missed.
If you ever want to talk our helpline is here to listen and support. You can reach it at 0808 800 6000.
Oh no Bumpkin was a vital member on here she was a lovely person who gave me so much help. I have missed her so much these last few months. First Belinda then Wolfie and now Bumpkin our little gang is disappearing how it brings it home what a dreadful decease we live with.
My heartfelt sympanthy to her husband son and family and friends.
I am so very sorry to read this. I loved Bumpkin's advice and humour. RIP Bumpkin, you were a wonderul friend.
My thoughts and prayers are with her family.
I'm so sorry to be the bearer of more bad news but Bumpkin sadly passed away on Monday evening. Her husband said she remained hopeful and positive to the end and said she always maintained she was 'living with cancer', not 'dying from it'.
I know she was a tremendous support to all the Forum ladies, particularly on our thread. To me she became a good friend. We corresponded privately, weekly, for the last 18 months, and it was because of her advice and support that I gained a second opinion and am here now, currently enjoying my life. She was a lovely, kind lady who tried so hard to remain with her husband and son.
I'll post on the dedications thread as well.
I have found it so hard to accept losing both Belinda and then Wolfie they were part of our little gang and will be missed so much. There is a dedication thread in the dedications and remembering others at the bottom of the page.
I hope you are both doing ok and all the others on this thread
Hi Stresshead - yes, my heart sank when I read about Wolfie and just feel so heartbroken for her and her boys. It all seems so unfair. I hope you're doing okay.
OMG...i cant believe what i have just read abot Wolfie.
I havent posted for a while (will catch up soon) and this was such a shock. Corinne was my 'soul buddy' as we seemed to be going through nsame things at same time. She was a tower of strength and she never ceased to amaze me with her zest for life and her love for her precious boys. I too had an 'inkling' when her posts dropped off but also thought she was just sorting things out and spending time with the boys. I never realised things had got so bad and has someone else has said it just brings it all home. My heartfelt thoughts go to her family....she was a real inspiration and deserves the pride you all have for her. xxx
We are really sorry to hear the sad news about Wolfie, she was a valued and supportive member of our forums and she will be missed.
On the behalf of the moderation team at Breast Cancer Care we want to offer our sincere condolences to Wolfie's friends, family and all that knew her.
If any user wishes to talk, our helpline is available at 0808 800 6000 to offer support.
So sorry to hear about Wolfie. She was so supportive, sharing, informative, kind. So good for someone like me to read her posts. Her boys were central of course. She will be keeping an eye on them for sure! She used her courage and determination to be happy for them. Best wishes to Wolfie and her family.
So sorry to hear this,she was always full of excitement over what she was doing or going to do with the boys. Because of her up beat posts I don't think I realised how ill she was,it just makes it all so real.
Thankyou for letting us know about Wolfie Corinne I was so shocked to see your post. She was so loved by all and we did not know she was so poorly. This rotten decease is so cruel.
We admired her so much for wanting to spend as much time with her two boys. She wanted them to have as many memories and I think she gave them that especially the trip to Euro Disney at Christmas I'm only sorry she didn't have the chance to do more.
My commiserations to you all at this difficult time may Corinne as I first knew her R.I.P xxx
Hello Mick - yes, I hoped she would get much longer but it's such a cruel disease. I had some private correspondence with Corinne after she had some issues over whether she was getting the right treatment. She firstly sought help and advice on this Forum thread and then offered support, advice and friendship to the other ladies, and she liked to tell us what she'd don,e and what she planned to do, with her boys. Her enthusiasm for her family shone through in all her posts on the Forum and in private chats. I'm so glad you're going to do the things on her list with your boys.
Best wishes to you and your boys for the future. I know she'll be very much missed on this Forum.
Thank you Wolfie's husband for letting us know.
I was so excited to see her name on our thread after not hearing from her for quite a while but now I just feel so shocked and heartbroken. I thought/hoped she was just putting all her efforts into family life and getting on with things.
She loved her boys so much; it was very evident in all conversations with her. All she wanted to do was to be here for them and it's so unfair that she can't do that. I'm just pleased that she did so many wonderful things to create lovely memories for them. I hope they can draw some comfort from that.
Thank you everyone for your help. I spoke to SBC nurse , who said she didn't think it was anything tomworry about , maybe a change of washing powder. I javen't changed my washing powder. The ' thing ' is more like spider veins. I'm going to keep an eye on it and if no change go to see some one. But thank you for your advice , very much appreciated . Marie xxxxx
WOW girls thankyou so much for sharing your stories
Dawn I always find your posts so interesting and informative I have valued them since I was dx with secondary 3 years ago. You have been through so much and I wish I could have had a onc like yours. I find I always question how good mine are I have had 3 different oncs with lots of registra's helping them if you count the one in 1996. Your longevity is certainly something for the younger ladies who have the misfortune of getting secondary cancer to have hope for years to live with it. Thankyou.
Lynn your input is also valuable your story of your skin mets maybe it wasn't like mine but it is still important for others to read and belongs in the skin met section.
Janice if it wasn't for you this thread would not have been so good Ladies like Bumpkin, DBNO Stresshead have all helped to keep it going and give good advice anyone I have missed I am sorry.
Now we have Mo with a different experience with her story. Lets hope this thread helps others to feel they are not alone and to check everything unusual around their tumour scars or areas
Love to all xxx
Thank you for asking about my rads. Yes, I am finished now. No more hitting the motorway! It looks just about the same, but the radiologist yesterday said it works for up to 2 weeks post treatment, and anyway I may not have redness. Some do, some don't. She knew someone who had 30 doses and no redness! But it should work either way. But I use plenty of cetreben moisturiser. I have hopes that it will shrink, even disappear! Optimistic, but standing knee deep in all this one needs to be optimistic. She also said that tiredness can sneak up later on so I have nothing planned. Interesting that you had 5 treatments too. I don't know of anyone else who had radiotherapy at the secondary stage for skin. And nice to know it did help. Thank you for telling me that.
It was nice to hear from you, Dawn. I have read your posts before since dropping down this rabbit hole in Nov 2013. I don't know where I would have been without these threads. So much sharing and support. It is good to know you are still out there.....a long term survivor. You give us determination to press on.
Love to all! A cold but sunny week ahead.
You will have finished your rads now Mo, hope you have good results. I had 5 treatments a year ago purely palliative and it did help, as you must have been told the effects get worse before they get better.
My mets started by looking like little lumps under the skin which eventually broke through, to start with they were completely colourless. Seems we do all have different experiences with how they present.
Dawn nice to hear from you, another long term surviver like myself.
Well done Melrose for being acknowledged as being so supportive, you always seem to know the right thing to say.
Been to hospital today,told onc.what a rough week I've had and she's given me this week off with a view to having a break once a month. Done 12 weeks now every week, would be nice to have a week to look forward to.
Hope everyone is enjoying the sunshine it has certainly been in short supply this winter.
like Dawn I feel that I do not have a lot to contribute to this thread, but I do follow it because when I was first diagnosed (secondaries 6 weeks after primary in Oct 2012) I did have a lesion under my breast which was found to contain breast cancer cells.
It was about the size of my small finger nail and would weep a bit but then get better for a bit. I thought it was my bra rubbing, and I would occasionaly put a dry dressing on it when I wore underwired bras. I kept meaning to mention it to my GP but I didn't see him very often in those days.
After Dx but before my Mx I saw the practise nurse, can't remember why but I did remember to show her the lesion, she insisted that I see the GP and went to ask him to see me between appointments. He came looked and it and told me that he thought it was cancerous. He also said that it was 'something or nothing' compared to my recently diagnosed cancer, just skin cancer which would be easily removed. Normally he said he would just cut it out at his clinic under a local anaesthetic but since I was to have the Mx in a few days he asked the breast surgeon to remove it at the same time.
When the pathology results came back they told me that it had breast cancer cells. A few weeks later I had my other breast removed because I had primaries in there as well.
The surgeon was very reluctant to do it, he was fearful that it might cause eruptions in the skin if he inadvertantly cut across cancer cells. The onc was very supportive, he said that he could understand how I felt and should there be any 'eruptions' they would deal with them with radiology.
Anyway they did the bilateral Mx over three years ago. I do have a red spot which looks a bit like a bite About 2mm. In size on my scar. It has not spread or changed in three years so it has been left alone, they took a photo of it for comparison, and look at it every once in a while just to keep an eye on it.
I used to wonder sometimes if I had gone to have the lesion checked out earlier if they'd have discovered the breast cancer sooner and maybe I'd have not have had as much spread. But 'hey ho'
I would certainly now have anything I had any concerns about looked at, and has already been said - by a cancer specialist.
I have not been following this thread because I felt I had nothing to contribute as cutaneous mets was outside of my experience with breast cancer. It's funny how the passing of years can dull the memory - or has 'chemo-brain' got something to do with that lol! But when I was looking at it yesterday it suddenly struck me that I have been incredibly fortunate to have escaped the awful time that some of you have experienced with this. Back in 1998 (I think) I had an appointment with my breast surgeon for a check up after my first mastectomy. He seemed to be unduly concerned about a few of what I thought were flea bites (yuk). I had a couple of persian cats and we live in the country and these were an inevitable part of what 'goes with the territory'. If he had not acted so quickly and what I thought was very drastically with the situation my story would be quite different. He immediately did biopsies on 3 of them and sent the tissue off the be analysed. It came back as cancerous and my next appointment was with himself and a plastic surgeon. The op they did was a VRAM which is similar to a TRAM but vertical instead of horizontal cut. He had to remove a huge area over my chest wall down to the ribs - thought he might have to remove some of the ribs if it had got into them so you can see why I thought it all sounded quite drastic. I hadn't realised the implications back then. I suppose there wasn't so much information available and we didn't scour the internet as we do today (was it around then?). It had happened because my first experience with bc was quite a large tumour in the breast in 1990 which had responded so well to chemo & rads that it wasn't visible any more so I did not have any surgery then. When it recurred in 1997 I kept getting told it was just hardening of the breast from the rads but I was convinced the bc was back and by the time I convinced them it had spread throughout the breast tissue and I had a mastectomy but there were still some cells left in the skin around the mastectomy scar. Those 'flea-bites' were the first sign of skin mets starting up and I am so thankful for my quick-acting breast surgeon. Sadly he has been lost to us as he too became a victim to cancer.
Obviously from your posts they can present in different ways but anything appearing around the breast area needs investigating, and fast. Redridinghood posted wise words when she said GPs know nothing and to insist on seeing a breast cancer specialist.
I am struggling to keep my eyes open now so will say goodnight. I hope for all of you that the treatments you are on will bring good results.
Mo's experience is a little different to others on this site. It's true it can come in different forms but ours are like chicken pox spots red but clustered together in one area to begin with usually around the tumour area mine were under my primary effected breast where the secondary tumour decided to grow on the chest wall there were 11 to start with. Now they have spread across to the cleavage and upper stomache but they are smaller and staying quiet proberly due to the capecitabine. My second lot were like little bubbles I couldn't have radiotherapy because I am already scarred from the primary in 1996.
But if you have something that worries you it is always better to get it checked out as Mo has done. I do hope it gives you a better idea Marie if you google it they have images. It's cutaneous mets.
Take Marie xxx
Thank you so much for your informative reply. As someone who has suffered from excema, and generally has little rashes it's so hard to know what is nasty and what is just one of those things. However, I am going to take your advice and talk to someone in the know.
What would I do without my cyber friends
Hugs Marie xxxx
Hello, Marie 123,
I'm no expert, but I don't think anyone is! My original skin met was like an everyday little pimple.......very small.......beside my mastectomy scar. Under normal circumstances you would barely look twice at it. I ignored it for a long time........perhaps a year. I was perfectly healthy otherwise. I thought cancer was long gone (13 years), but eventually I was suspiscious and showed it to my GP. 'It's a sebaceous cyst' he said. I felt silly and I wanted to believe him, so I did, but returned 6 months later and lied by saying it was sore. It wasn't. He eventually agreed to remove it..........he had a weekly skin clinic.........and of course it was breast cells. But it looked innocent. The important things were its position, and that i had had primary breast cancer, which the GP ignored.
After that I ended up on letrozole, with bone mets and lung spots. Those spots disappeared, but bones stable. However, I noticed a slight pucker in the skin about one inch below my scar. I showed it to the onc who said no, it doesn't usually look like that. I think you know where I am going. About 9 months later there was sometimes a puffy area there, about 1 cm across. Nothing else. In the 'normal' world you would ignore it. They decided to biopsy it and yes, breast cells. i am having radiotherapy as a local treatment at the moment at the Churchill.
What I am saying is that skin mets can present as almost anything. My experience tells me that anything unusual, particularly near a mastectomy scar, in someone who has a history of primary breast cancer, should be biopsied. GPs know nothing so one must insist on seeing a breast cancer specialist. Even they can be unsure but they wouldn't hesitiate to investigate. One doesn't want to put terror into anyone, but it is just sensible. Knowing what I know now I should have had my 'pimple' biopsied a few years ago. But I fell on the conveyor belt in the end. No thanks to the GP. I nearly missed the boat altogether.
I can only give my own experience, Marie. I seldom have the chance to say anything useful but thought I could reply to your question! i hope you aren't worried about possible skin mets yourself, but if you are then discuss it with someone in the breast cancer world........BC nurse, onc. If it is nothing then why not know?
Take care and have a quiet Sunday. I am sure there will be more posts here from people with skin mets that look very different to what I have experienced. This is a very sharing thread. Blowing a gale here!
Good Morning Ladies, can I ask what may seem a silly question , what does skin mets look like ?
Hugs to all M xxxxx
Thanks for your interest Marirose. I agree with BCC.......you are a champion! I am having my treatment at the Churchill in Oxford. My oncologist is based there, but I live in South Bucks so it is a 45 min trip in the car. Not too bad in the grand scheme. My onc comes to my hospital at High Wycombe one and a half days a week. The bar code is for repeat patients like me having radiotherapy......most having much more than me for primary of course. You just scan when you arrive. No waiting at a desk. Good for them and for us. And repeat patients have the parking ticket so you feel you can arrive as early as you like without worrying about the cost. It makes sense. i have been arriving hours early in case of traffic or not getting a space to park. I have found the Churchill kind, welcoming, and efficient. The Maggie's is very welcoming too. Wish it was nearer.
Still no ses really. The driving is the worst se so far! Stress. One of the nurses said the skin may react in the week/s after treatment so I'll have to wait and see. But if it helps I don't care. We'll try anything I think. Thank you for your support. It is such a help from someone who understands what is going on. My friends just tell me how well i look.........I suspect they think the treatment has fixed it and I don't frighten them by going into detail. Most people don't understand secondary which has rather sidelined it. But that is another story. I am lucky my bone mets don't give me pain....yet. My lung spots disappeared early with letrozole. Will they return? I am learning to live from scan to scan! My next in March.
Good wishes to everyone. This thread is very supportive and informative. I remember dear Belinda saying that. It is a mine of shared information about skin mets. Skin is a neglected secondary. There are few treatment options, but electrochemotherapy is on the horizon here at last. Standard in Europe apparently. One of our group is preparing to have this. Stresshead I think. I seem to remember she is starting in March. Good luck, Stresshead, if you are there!! We are all awaiting your update!
Cup of tea.
Dear Julia thankyou for your kind words I feel a little embarrassed I think we are all champions fighting to stay positive with an incurable decease. I salute all of you that continue to work while struggling with se of treatments. We are all there when someone needs reasurance and advice I wish I could be more knowledgable on some medical terms
Dear Mo How far do you travell to the hospital and which hospital are you in. I'm glad you have been able to secure a parking permit the barcode is new to me. I hope you have not had any se from the rads but it's all in a good cause.Sending you Hugs for Monday.
Sending Hugs and love to all our skinny friends. xxx