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metastatic breast cancer with cutaneous mets.

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Re: metastatic breast cancer with cutaneous mets.

Thanks for the links Mo. I have read some of them but need more time to trawl through. The tamoxifen - I'll explain what happened to my mum.(approx dates)
Nov 14 - diagnosed breast lump by biopsy and a positive node by fine needle aspiration.
Jan 2015 - Chemo first (fect) - reduced tumour and lymph node - was big node.
June 2015 Then lump removal and slnb post chemo. Apparently new way to do it - if clear nodes then chemo has worked and no need to full node removal. All 4 nodes taken were negative - they were v convincing and happy.
July 2015 - Radiotherapy. Mum goes to see oncologist to tell him lymph node feels enlarged. Referred back to locum breast surgeon (arrogant) who examined by hand and said its just a reactive node from surgery - 'I'm not chasing lymph nodes' he said. No further action.
At some point after surgery mum was put on anastrozole.
October 2015 - lymph node much bigger. Back to breast clinic - new surgeon. Immediately does ultrasound. It's the cancer and worse still, it's the original positive node (plus a second one it was matted too). Seems they took the wrong 4 nodes out and claimed the chemo had worked whilst the original cancer node just sat there. They have admitted this.

Jan 2016 - ct scan clear.
Full node clearance arranged.
Full node clearance done - a few days later a punctured artery from the op so back for emergency operation.
During mums chemo she suffered constipation. This let to diverticulitis which led to a fistula between her bowel and bladder. She had this operated on in april 2016. They had wanted to change her med to tamoxifen as clearly the anastrozole hadn't worked but she had to wait several weeks post op due to higher DVT risk. When she went to get it changed - in June - that was when her skin met was discovered. She was still put on tamoxifen that day. But lumps have still popped up.

Still on it now until full results. The onc (a woman and very nice) has said its not really triple neg even if it's lost all receptors and true triple negs start off that way. However they still have to be treated as though they are but not usually quite as aggressive.

Sorry for the long story - just thought I'd explain more.

No key worker yet - just someone to call to chase up future scans. No appt yet either - all waiting for ct and then the MDT meeting which I know is Friday at out hospital - so it will be another week.

My mum said her breathing was better today - hoping it's the copd in this hot weather.

I have the day off work tomorrow so will have time with my mum and my boy again.

Take care all.
Xx
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Re: metastatic breast cancer with cutaneous mets.

Marirose............So nice to hear that you are on holiday........in France! And with those 3 grandchildren! Have a wonderful time. Stresshead is right.......you deserve it. 

 

Stresshead.........I agree with Marirose about your breathlessness being improved.....a good thing. If you passed the oxygen tests that must be good too! But also I am pleased that they have left you with the portable oxygen. Nothing like simple peace of mind, even though you may not need it at all. The backup is there, just in case. Take care, and don't worry too much about having your last carboplatin. Your body needs a break, and then see what happens. Thank you for sharing your experience. So helpful for us all, particularly for Daisy at the moment. Take care. Love these long evenings, but getting sleepy! That's just plain old age!

 

Goodnight everyone out there.

 

mo                 (((((((xxx))))))

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Re: metastatic breast cancer with cutaneous mets.

Daisy,  Thanks so much for updating us all. I have been thinking of you and your mum today, but had car issues plus my injection so no time to go online until now. I must say I am a bit frustrated by your onc, like you must be, although I suppose he can't help it. If only the histology results had come in he surely could have made some sort of start? The scan will show progression, or which organs are/are not involved, but he won't take biopsies from those, particularly as your mum already has or has had nodes and now skin for biopsy. I am also curious why she is still on tamoxifen. Why not letrozole I wonder. They are similar, but your mum is 65 you say........I am 69.......and they usually move to letrozole. On the other hand my onc has said that when letrozole stops working for me I might go back on tamoxifen. I took it for 5 years after primary which was in 2001. Ho hum. I often feel we have fallen down Alice's rabbit hole into Wonderland! But........you know more now about possible chemos. Cape sounds manageable. I have met someone coping well on it long term.

 

I am sure you already know that there are chemo threads here where people talk about specific chemos. It won't matter if they are primary or sec. You are very well informed and you may have searched these threads so don't need to know, but I did a quick search and found https://forum.breastcancercare.org.uk/t5/Chemotherapy/Advice-on-Taxol-Palcitaxel-please/m-p/1032398#... in the chemotherapy thread: https://forum.breastcancercare.org.uk/t5/Chemotherapy/bd-p/4435 which is in the 'going through treatment board: https://forum.breastcancercare.org.uk/t5/Chemotherapy/bd-p/4435. Sorry! You have probably already found all this, but sometimes I have discovered things here that I hadn't seen before! It's a maze! You could post on that paclitaxel thread, or search others. There is a 'top tips' thread for chemo which could be useful too. Again people sharing what worked for them.

 

Does your mum have a BC keyworker nurse assigned? Perhaps you could make an appointment with her to discuss chemo effects. They are 'hands on' and know lots. They have had every sort of person go on chemo. Have you every rung the BCC hlepline? They are very knowledgeable....all are BC nurses.

 

Enough. I'm sounding bossy! Sorry to ramble! You probably know all the above! Have you got another appointment yet, or will things pause until the scan is done? You are slowly getting there. I hope the onc was forthcoming and helpful. Take a rest now. You are a very good daughter. I hope you enjoyed your weekend with your mum. I know you had a few things planned. Hugs to your little boy! Take care for now,

 

mo                xxxx

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Re: metastatic breast cancer with cutaneous mets.

Profession should say progression. Sorry .
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Re: metastatic breast cancer with cutaneous mets.

Hi all

My mums appt with the oncologist didn't give us much more info - no prognosis due to lack of CT scan. The full histology report not back - although the breast consultant seemed to think it had lost all its er receptors, that hasn't actually been reported yet the onc said. How we, apparently the node they removed in January was only 3/8 , we were told 4/8 originally and last week - maybe it was different in different areas. Mum still on tamoxifen until final report in as original breast tumour was 5/8 and onc said as they took two different biopsies, we need to confirm both wouldn't respond. Hasn't so far though, hence the spread.
Still no CT scan appt - and you were right - no chemo until then. Discussed the two chemo options - iv paclitaxel and cape - onc said if ct scan shows organs involved then iv first for 6 months, scan half way, then cape after that - for as long as it works (if it does). Worried about how my mum is going to be on the paclitaxel. She is only 65, but has copd (mild to moderate). When on fect she developed neutropenic sepsis and chronic constipation - had a bad time with it. I've just posted asking how others found paclitaxel in comparison to fect. Any of you had these two to compare?
Marirose it must be wonderful havin some quality family time. Are you on treatment now?
Stresshead - why do they have to allow profession? For a different population of cells to target? It does sound scary but why would it be too late - could it not just be reduced again? The onc said so thin to my mum about maybe need to have a break then going back on.
Xx
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Re: metastatic breast cancer with cutaneous mets.

Dearest Marierose, please donrt worry about posting...yo just enjoy your well deserved time with your family and let us know when you are back.xx

Daisy, have got everything crossed for today .I'm sure the onc will be able to reassure you but i would imagine you will have to wait for the scan before they can start treatment...maybe they can rush it through...its the waiting that makes things worse.

I have now been on treatment since August 2014. I was given docetaxol and capecitibine (this was a harsh regime but cape on its own not too bad) and when i finished that in Feb i was  told i was in remission. Two weeks later i developed a rash on my right reconstructed breast which turned out to be more spread. I was then given  eribulin which, although it didnt work for me, has given lots of ladies good results. Then i had weekly taxol, then my onc pt me back on capeitibine as it 'had worked before' (i pleaded with him the first time to keep me on it but he said no).this didnt work so am now on carboplatin but only have one cycle left....then i think they want me to have a rest from chemo's. This is scary because  in order to have any more treatment the disease has to progress by which time its too late??

Please  let us know how you get on and ask us any questions you want.

xxxx

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Re: metastatic breast cancer with cutaneous mets.

Hi Skinny friends

 

Sorry I cannot keep in touch often but I am in France at the moment with my 3 lovely grandchildren oh and my son and daughter-in-law.

 

Daisy I am glad your mother is getting sorted and she will soon have a treatment plan. You are in capeable hands with Mo and stresshead who are both wonderful ladies with good knowledge of treatments.

 

Stresshead I am so pleased your breathing is getting better although when the weather is hot it can make you breathless. You have come a long way these past few months and I am glad you are more like your old self.

 

Sorry if the post is a bit rushed but I get little chance to come on here at the moment.

Love and (((((hugs))))) to all my friends xxx

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Re: metastatic breast cancer with cutaneous mets.

So sorry to hear about your mum too. It's all too awful for words really. Xx
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Re: metastatic breast cancer with cutaneous mets.

Hi Stresshead, thanks for sharing your story. I'm guessing my mum will go on cape first? Did you? I too am panicking about the triple neg conversion. We knew the hormone treatment wasn't working when her lymph node (that they thought they had removed) enlarged. Once they took the node out, they thought they had it all though.
When you say a short space of time, how long have you been on treatment?
Mum was told that the urgent waiting list for ct scan is up to two weeks. She sees the onc on Monday though so not sure if they'd start treatment before the scan? Don't they need a baseline scan to see if treatment is working?
I hope you're right - I wonder if they have new drugs ready to trial?

Xx
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Re: metastatic breast cancer with cutaneous mets.

hi Daisy, sorry to hear that your mum has had confirmation of SBC bt at least now you are working towards a plan. I too was er+ bt changed to triple neg, which scared the wits out of me, especially as i lost my mum to the same thing almost a year ago. I wasnt told at first until i asked about all the hormone treatments available to me andwas then told they wouldnt work.....so many things i thought i could have which would probably have extended my life to be swiped way just like that.I have gone through many chemo's (wont bamboozle you with names unless you want me to) you  in a short space of time so not many options left but i'm sure your mum will respond well. I just wish there was as much emphasis put on  finding treatments for TN as er+ and her2+.Please keep posting and tell us how things go...you never know betwen us we might get to hear of different, new treatments. Good thoughts and best wishes for Monday.

 

Just a quick update...have just ben for more oxygen tests and even duringn exercise they are normal. Whatever cases my breathlessness its notlack of oxygen. They are taking the oxygen away from home but just to keep my mind at rest are leaving me the portable one.

 

Cyber hugs to all (((   ))).xx

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Re: metastatic breast cancer with cutaneous mets.

Up early as I start work at 7.30! Had to wake my son.
My mum has no other symptoms yet. Sore wrists but she puts that down to arthritis.
No word on ct scan - she's going to call tomorrow. My background is science so I feel I need to know everything - even awkward questions they sometimes cannot answer.
It's my father in law that finished chemo about two months ago for multiple myeloma. He has a bone marrow biopsy on Monday to see how successful the treatment has been.

You're very right about uncertainty - none of us know what is awaiting us tomorrow.

I'm having my mum stop here Saturday and Sunday. Taking her for a meal and cocktails on Saturday and to the beach on Sunday .

Thanks for all of your input and help.

Xx
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Re: metastatic breast cancer with cutaneous mets.

Daisy, You were up early! I suppose that is being a mum!

 

OK. I see now that you were seeing the surgeon yesterday, and the onc on Monday. The onc should have quite a bit of lab results to base his decisions for  treatment on, even if he doesn't have the scan results. The scan would show if bones are involved, which would mean including some bone strengthener, but that could come later. Yes, I have bones in several places, but luckily no pain or problems for now. But I have a bone injection once a month to strengthen them and it helps healing too. Denosumab. This is a world of uncertainty, but in a way life is  uncertain and we all have to adjust as things trip us up along the way.

 

You sound quite knowledgeable already, Daisy. I think like me you like to know, whatever it is. I'm all for understanding what is going on. Don't worry too much about the scan. The onc may push that forward even more on Monday, and then book to see him again shortly after it. But the main thing is he should know about your mum's post-biopsy status. In my experience surgeons don't like venturing into treatment discussions. i saw a surgeon to begin with for my sec dx and in the end he laughed when I asked questions and said that his job was cutting people up! You haven't mentioned bone pain or anything, which is good. No coughing etc either. Her main thing has been the nodes and skin bumps and that has got them going at last! I'll be interested to know what the onc says on Monday. Keep that notepad handy!

 

In a way your little boy has a nice mixture of pre-school and his two grammas when mummy isn't available. Plenty of variety and hugs! And yes, your family has been unlucky all round if gramma 2 has terminal as well. Is that breast cancer? Monday is your target now and the oncologist will be very experienced, with plenty of strings to his bow.

 

Take care for now, and best wishes to your mum,

 

mo               xxx

 

 

 

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Re: metastatic breast cancer with cutaneous mets.

Hi mo

I know they'll be able to tell what time of cancer it is - but wondered if they'd got to that conclusion and although he said there were cancer cells, he said thought it must be from the original tumour but that they didn't have complete picture yet.
It was the breast surgeon we saw so no idea which chemo yet, that'll obviously be the decision of the oncologists on Monday. He said that the scan results probably will not be available then as my mum hasn't had it yet - just an urgent scan had been requested but no date yet.
I live about 15 miles from the hospital but my mum only lives about 3-4 miles from it. She can drive but of course I always want to take her.
I have a full time job to so its back to work today - not looking forward to it. My son has a mixture of pre school, my mum and my in laws looking after him. One of my in laws is terminal too. Hard times for all.

Do you have bone metastisis or are they strengthening injections?

Xx
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Re: metastatic breast cancer with cutaneous mets.

Well, Daisy, you have learnt a lot today. Your mum's position is complicated.............her status has been changing........but the oncologist seems to be focussed now. The scan will tell them more of course. And you say that the report is not yet complete. I think that they can tell if cancer cells in the lung are primary lung cancer, or metastatic cells. The lab can find characteristics both chemical and under the microscope. The main way it matters........again I think.......is treatment. Which chemo. As you said it is sounding as though your mum is triple negative, which will mean certain chemos. Things are progressing towards her treatment options. I don't think words like 'aggressive' are very helpful. It doesn't mean much as she isn't receiving appropriate treatment yet. And you say there have been no new bumps this week.

 

You must both be tired. You have had such a lot to take in. But you seem to have formed a better picture now, and you will be fully armed with more questions on Monday. I think it is the waiting at this beginning stage, and the steep learning curve that is the hardest thing. I felt I was in a whirlpool at the start of my secondary dx. If you throw in shock and fear it is the hardest time. But you are approaching the treatment stage.........hopefully there will be clear decisions on Monday. I assume the onc will have the scan result too.

 

Try to relax a bit now. Did your appointment involve a lot of travel? You have just a few more days to wait, so try to keep busy. You have that little 3 year old!! She needs mummy, and gramma, for play! Let her make you happy! 

 

Off to bed. Thanks for updating us. Sorry I've rambled a bit. I'll be thinking of you both on monday. I'll be at my hospital having my bone injection in the chemo ward. Goodnight to everyone else too!

 

mo               xxx

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Re: metastatic breast cancer with cutaneous mets.

Thanks Mo and Marirose. They confirmed it is the cancer today but said it has changed its receptor status. The breast originally had 5/8 oestrogen (pr and her2 neg), then the lymph node that they failed to remove for months that was removed this year was 4/8 oestrogen and now there are no oestrogen receptors. Still haven't got final report yet though he said so there will be more info. Oncology appt Monday and urgent ct scan ordered. Said it is aggressive as the lumps have come up fast, although she had no new ones for a week.
So I have a mind that works overtime. Concerned about the receptor change. I know it can happen but now wondering if it is definately the same cancer or even if it could be lung cancer. I assume they look for other characteristics that inform them it's from the breast (other than those three receptors above?). I'll ask on Monday as found some info on line about other stains etc but hard to figure out how it's done when its metastisised cells and not directly taken from breast.
I think he said no receptors now - not just er loss. I'm guessing it's now become triple negative and therefore chemo is only option. Xx
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Re: metastatic breast cancer with cutaneous mets.

Daisy, just to say thinking of you tomorrow. I hope it all becomes clearer, with a plan put in place. Do ask questions. Anything at all. But I know it can be hard to keep a clear head when new things are being said..........especially new drug names etc. Ask for spellings! It's a learning curve. You never needed to know these things before. Soon you will both be experts!

 

I had little Anna at the weekend. I'm pooped! She never stops! Fortunately it was warm and sunny enough for the sprinkler in the garden. She throws toys under it and then bravely goes in to rescue them! She washed baby dolls.....I give her all the things she needs.........including skin cream, shampoo and toothpaste!

 

Take care and good luck tomorrow,

 

mo                 xxxx

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Re: metastatic breast cancer with cutaneous mets.

Hello Daisy

Welcome to our thread you will get lots of good advice on here from all our skinny friends. Mo speaks alot of wise advice as do others. Your mother will feel alot better when she gets her treatment plan. Some treatments can help the skin mets dissappear so lets hope this will work for your mother. Just keep showing her how much you care she is lucky to have you.I hope it all goes well for her next Wednesday. Do let us know how she gets on.

 

Hi to all my skinny friends skin mets still doing well. Although when I go off to France I will take dressings just incase I don't want to tempt fate at least I managed to heal my ulcers last time. 

 

Love and ((((hugs)))) xxx

 

 

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Re: metastatic breast cancer with cutaneous mets.

Daisy........I understand a bit better now. There are other hormone blockers and they may try another, but also try other things. Is she HER2 +ve? Otherwise there are various chemos to try. Some are tablets with reasonable side effects. This is the hard part.......waiting until Wed. But........they will be fully informed now and armed with the biopsy results. I cannot  understand why medics are so slow to move with possible secondary diagnoses. People know their own bodies and what is odd or new. And when they dismiss things we want to believe them. But everything will be clearer on Wed. The consultant will have a definite plan for your mum. I'll be thinking of you until then. She is lucky to have such a supportive daughter.

 

Yes, I do have a 4 year old grandaughter! So we have little ones in common! I do love them at this age.......so honest, open, keen and loving. My little Anna is coming for a sleepover with mummy tomorrow so I have things ready. I'm allowed to spoil her a bit! She gets very excited! Give your little boy a hug from me, and give best wishes from the skinnies thread to his gramma.

 

mo         xxx

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Re: metastatic breast cancer with cutaneous mets.

Thanks Mo - I've been reading through the posts - noticed you have a young grandchild - my son is 3.5yrs. Makes me feel sad but I'm trying to stay positive for my mum.
I have been to all her appts - it's quite a long journey she had - they originally removed the wrong lymph nodes - said they were clear (after chemo) and dismissed her saying it was enlarged. Now I wonder if that is the cause of the spread rather than the original tumour. The fact it was left months or when it was removed.
Anyway I know her tumour was only 3/8 oestrogen pos. She was on anastrozole and then changed to tamoxifen as clearly anastrozole didn't work for her. Seems the tamoxifen may not be either although she's only been on this since after the first lump appeared. Was just the day they switched her - nothing to do with lump. Therefore hormone blocking treatment may not work for her. Also it was grade 3 so naturally I'm more worried. Thanks for replying xx
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Re: metastatic breast cancer with cutaneous mets.

Daisy, I agree with stresshead. You have come to the right place where everyone supports and shares what they know. It is quite a steep learning curve! I have had several skin mets. The first was dismissed as a sebaceous cyst on my scar........seems quite common......GPs need some updating........then 2 were found under the skin, invisible. They haven't reappeared after being biopsied. I have had one small one appear and had radiotherapy on the area and for now it has dried up. Otherwise I have bone mets. Had lung mets that disappeared after 3 months on letrozole, which i have been on since Dec 2014.

 

I say all this because so far  your mum is not being treated for her secondary. She will be put on a treatment plan next week which could change things. She is on nothing at the moment, despite her previous primary treatments. The plan will depend on her status.....ER etc. The biopsy results will inform them. If you have any questions........ANYTHING........write them down, and ask. If you go with your mum do take notes. I have a friend who always comes with  me. She licks her pencil, smiles, and then takes notes! We talk it over afterwards! And feel totally free to ask anything here. These ladies are so keen to share. All so kind.

 

All the best for Wed, and do return here if you have worries, or questions. The ladies here are so good. I don't know where I would be without these forums. I visit the bone thread too of course which again is full of cheerful, well informed ladies.

 

mo                    xx

 

 

 

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Re: metastatic breast cancer with cutaneous mets.

Thanks stresshead. Biopsies were taken yesterday and mum just had a call for an appt next Wednesday to see the consultant.
Do most of you have localised skin mets? My mums lumps are more widespread, which I know can happen, but worries me more.
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Re: metastatic breast cancer with cutaneous mets.

Daisy, you have done the right thing pressing for answers and coming on here. I was told my first skin met was a sebaceous cyst and was left untreated for 6 months. There are lots of treatments but it is very difficult to monitor and does seem to spread rapidly. Have a look back on this thread and you will keep up loads of info. Anything you want to know, just ask and we will all try and help. Keep posting and let us know how things go.

Best wishes x

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Re: metastatic breast cancer with cutaneous mets.

Hi all - hope you don't mind me posting here. I've been on this forum a while - because my mum was diagnosed with BC in 2014. She had chemo, surgery, SNLB (apparently they do it post chemo now at our hospital) and radiotherapy. Early this year a swollen lymph node (that she had been told wasn't anything to worry about but was actually the original infected node) was discovered. It had not been removed in error. Anyway a node clearance followed but not more treatment was given as not felt necessary.
Three weeks ago she went for a routine check and mentioned a lump on her rib cage, opposite side to original cancer. Consultant wasn't worried - said it was sebaceous cyst but would take it out to stop any future worries. Two weeks later, before it was removed one more appeared in axilla and a swollen lymph node - again opposite side. My mum went back to see him - the lymph node had a US and showed nothing so he brought op forward (to today) to remove both lumps). However in past week about 8 more have popped up - breast, arms and lower back - pretty widespread. She told him today and now we're seriously suspecting cutaneous mets. They're so fast growing and like nodules/cysts under the skin. The two removed went sent to histology as urgent. Obviously we're both devastated. I'm hoping to get her to come on the forum if she feels it will help her.
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Re: metastatic breast cancer with cutaneous mets.

Hi skinnies....just wanted to let you know that yesterday went well. There is no evidence of new disease and the onc says my skin is how he would expect it to be with so much treatment which has cased scarring and fibrosis (hence the shrinkage Marierose). I am to continue with last two cycles of chemo and see how we go....glad of the 2 month reprieve bt sick of crosing bridges when we get to them. As i said to him, if my chemo stops the only way they will know to do anything else is when it gets worse and by then its too late. He just said we'll make a plan. Oh well...just got to try and enjoy the two months.

MarieRose, so glad to hear you have no dressings. I have had them now for nearly a year and don't think i'll ever get free of them.

RRH..thanks for your good wishes.

Nicky...thanks for the holiday advice. As much as we like city breaks or hoidaying in England its not much of a rest for my hubby who does the driving. He especially likes to go abroad and just lie on a beach, the hotter the better. I sppose anything is better than nothing though: i just dont seem to have any stretch of time without one appointment or another. lets just hope we get summer here soon.

Much love to all.xx

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Re: metastatic breast cancer with cutaneous mets.

Marirose, so lovely to hear from you and I'm pleased to hear that your skin is coping so well.........no dressings! Sounds good. But sorry you are not feeling too well. Remember - your body has been through a lot recently. Ect was a bit of a shock......literally......to the system. Now your body must be working hard, keeping the skin so well. So rest, rest. Give yourself a break! But thanks for taking the time to update.

 

Stresshead, I was thinking of you today and am hoping it all went well. I had rather a lot of time this morning in fact..........car had a flat tyre........flat as a pancake! Ho hum. Lots of hanging around after my usual initial panic! I'm ready for bed now.

 

Love to everyone. Someone said we might get some summer this weekend!

 

mo                xxxx

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Re: metastatic breast cancer with cutaneous mets.

Hi Skinny friends

Sorrry I haven't been on for a while but I have not felt too good awhile think it is because I have had too much chemo to the skin. The cape overflows into the skin causing sore hands and feet and I think with the added skin chemo i have had could have made me feel rough. The skin mets have been ok no ulcers thankfully and no need for any dressings so keeping fingers crossed it continues.

 

Stresshead it is lovely to see you posting more and joining in with other posts with your good advice. Well done you seem so much better I hope that breathing is getting better and I am praying your scan will be good news.

 

Love and (((hugs))) to you all xxx

 

 

 

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Re: metastatic breast cancer with cutaneous mets.

Good to hear from you, stresshead. Just to say good luck for Wednesday........well, tomorrow now. i'll be thinking of you.    xx

 

Love to everyone on this thread. I was nearly washed away in my car this afternoon in a huge downpour! Roads like rivers. Ugh. But the sun's out now! Love these long evenings,

 

mo               xx

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Re: metastatic breast cancer with cutaneous mets.

Hi stresshead

Just popping into the skinny thread, as I often read it but wanted to add something about travel insurance. When I couldn't travel far when my heart was giving me so much grief with atrial fibrillation we did a few short trips into Eurooean cities and I can definitely recommend it. I know at the moment all of them will be maybe too hot for your skin mets to cope with but the more northern cities might be good? It was so nice to get away for a short break from this horrible reality we live with and the travel time isn't too long for most of the cities. You can get a single (an annual) insurance policy from Eurotunnel whether you travel with them or not. You don't need to declare anything other than fir their criteria of being stable, not terminal, not seeking treatment abroad and your doctor says you are fit to travel. Now it would depend if this is the case at the time but generally you should be covered. Alternatively for a short trip you can still use your EHIC card (for now at least whilst we're still in the EU!) as well as a 'normal' travel insurance policy that would not cover your BC. That way you would get emergency treatment if needed using the EHIC but also covered for the other general things that a policy covers. Just some thoughts in case you want to go abroad but at the moment don't feel it's possible.

And good luck with today's appointment, I do hope it goes well.

Hugs to all skinnies, hoping treatments, and dressings etc, are treating you well.

Nicky x

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Re: metastatic breast cancer with cutaneous mets.

Hi to my 'skinny' friends....no posts on here for a while..in hope everyone ias as ok as can be.

Marierose..great to hear you are coping and recovering well. I was amazed to hear you are going abroad. everyone seems to be having holidays regardless of this stupid sbc. I have shied away because i dont think i would get insurance having had a pulmonary embolism and pleural effusions as well as sbc and couldnt see the point anyway as i would be unable to swim and would have to keep covered as my dresing are so obvious. Also the heatseems to make the skin mets more uncomfortable.

Advice from anyone....would it be woth asking about travel nsurance first and then booking if they will cover me or just going somewhere and hope nothing happens.

I know we can go in this country but cant seem to find any enthusiasm to book somewhere.

The other thing is i have so many appointments/ dressing changes we dont seem to have a stretch of time to go anywhere.

Talking of appointments, i have just heard that the Dr in london i have been trying to see ince December has now offered me an appointment. This has finally happened after i wrote a personal letter and copied PALS in.

Lesson for today....never give up..keep plugging away to get referrals, treatment etc.

I know he pobably cant do anything for me but at least i will have heard it from the man himself.

All i have to do nowis get through Wednesday when i see my Onc and get scan results, which, as we all do,

i am dreading.

Please  all post and let everyone know how you're doing.

Much love to all.

xx

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Re: metastatic breast cancer with cutaneous mets.

Hi stresshead and all Skinny friends

 

Everything seems to be going ok. I look at the skin mets and think what a mess 2 are black (more likely because they are healing) the rest have swollen or rather flat but a larger red circle. They are giving me no trouble the soreness I felt at the beginning has never returned thangfully. The redness in my skin was was the two chemos reacting together so the onc said. 

 

I do have Hyperbaric Oxygen therapy and the first Friday after my operation I felt okay to have this. I did have the sore pain when I entered the chamber but as the pressure increased the pain went and I have never had it since. I don't know if it was wishful thinking that the therapy worked but it seemed coincidental.

 

I did have two mets on my good breast that seemed to have swollen and tender when i touched them it worried me but now they seem to have settled down thank goodness. 

 

 

Well I will be going to France for nearly 3 weeks on the 21st the surgeon said it was ok depending on the dressings I would need. Well everything seems to be going in the right direction (touch wood) so I get to see my grandchildren. The appointment for the surgeon has come and it will be the 24th August.

 

Love and ((((hugs)))) xxx

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Re: metastatic breast cancer with cutaneous mets.

Hiya ...moderators there is a posting here today from Sonalee. ...
Not sure if this is suitable as its advertising something .
Can u investigate ?
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Re: metastatic breast cancer with cutaneous mets.

Marierose,

glad to hear you are making a speedy recovery....i seemed to take ages to get back on my fet but then i was hit with pleural effusions son after ect,

As i said before, mt back and stomach are just a mass of brown circles..i have never had any ulceration there although it was all very sore and painful at first. it is red underneath bt dont know if this is the cancer, scar tissue or what. There doesnt ap perhaps thats a good sign?? Only really my right breast, where all the trouble started is not healing, althogh district nurses aqll think its better. when they remove scabs and it bleds it is very very sore and the whole area is very red, again dont know the cause....my medical team never seem ken to look at it.

Please keep in touch with your progress.

Love to all on the skinny thread.x

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Re: metastatic breast cancer with cutaneous mets.

Thanks again for updating us, Marirose.

 

Quite frankly it all sounds very good! Your skin is healing by the sound of it, and settling down. I thought you would need dressings etc for weeks and be very uncomfortable initially. But there you are! The Hull support sounds good too, and the interest at home also very welcome. This could result in more referrals by your onc.

 

I also like the sound of your BCN and her interest in becoming a SBCN. They are needed as secondary is obviously quite different, and we secondary ladies need different support and understanding, not least an understanding of the complexities of metastatic cancer. I have never seen my BCN since she was appointed in 2014 apart from literally bumping into her in a corridor on the way to an appointment! But we have no specialist secondary nurses and it is clear that they have a big gap in knowledge. Actually I think that the secondary cancer is slowly moving to the fore generally at last as undertanding grows. (With gratitude to dear Holley Kitchen among others, bless her.) So good news on the nurse front too. I imagine your onc is also enjoying being at the cutting edge from the sound of it!

 

So keep it up! I am so pleased at how it has all gone. Remember being so uncertain about it all so recently, whether it would all even happen? My little patch has gone quiet for now.....I'm seeing my onc next week. You have given me some hope and confidence with your ect experience as it might be down the road for me. Thank you. But anyway everything about secondary treatment is interesting.........pity I'm standing knee deep in it though!

 

Lots of love, and best wishes to all skinnies, and we are lucky to have this forum to share our knowledge and experience........and give support to one another. Thanks BCC!

 

mo            (((((xxxx)))))

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Re: metastatic breast cancer with cutaneous mets.

Hi Mo and other skinny friends

I had quite a day yesterday up at 5 and in Hull 8.20. I saw the nurse who examined the mets and agreed I needed no dressings I was managing very well but should the mets break out I could ring to see her. I told her how I had had 2 ulcers and how I managed to heal them with help from tissue viabilty advice. She said carry on doing what you are doing.The met that was starting to drip has now stopped and I have not seen any marks on my vest.

 

The onc was excited to see me she wanted to look at the mets along with Jenny the BN. She told me the surgeon had e-mailed her after the operation and said it all went well. She asked me how did I feel about it and had they told me the mets will turn black. I know there will be some discolouration and the black is only dried blood making scabs. 

 

I was very interested when Jenny the BN said she was wanting to become a SBN and was going to meetings to learn more and she gave me a resource pack to read and pass on my views. So at last hopefully we will have a specialised secondary breast nurse although she is concerned about the managment agreeing with things.

 

Well thats my news up to date

Love to you all and loads of ((((hugs)))) xxx

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Re: metastatic breast cancer with cutaneous mets.

It's all sounding good, Marirose. You are coping so well, and no soreness too! The puffy, blotchy eyes could well be your body reacting to the two chemos.....................a kind of allergic reaction to the unique ect chemo? Anyway, ask whoever you see next. Looking at your cape thread I see that you have been called back to Hull quite quickly. Good. They are keen to follow you up. take care.....

 

mo         xxx

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Re: metastatic breast cancer with cutaneous mets.

Hi Skinny friends

I am still here doing well not feeling sore but have had a small leak around tumour area just a drop nothing to worry about. Really felt down last Thursday I don't really know why My eyes where puffy and I had red blotches around my eyes and neck I didn't look like me I don't know quite what caused it. Maybe having chemo into the skin while also having it into the body I will mention it to the surgeon on Wednesday. I did not expect to get a appointment one week later.(see cape thread) I now feel more my old self again now although I am back in a vest to hold dressing in place no bras for a while it reminds me of Bumpkin with her advices (bless her miss her)

 

Stresshead I do hope your weekend went well with the house moving for your daughter I remember doing it with one of my sons we moved all his bedroom furniture and other bits he had collected while at uni only trouble it was a move to France we borrowed a large transit van. Makes me wonder if that is what gave my Hubby a heart attack a month later because he had alot of driving to do as he was the only one insured to drive the van.

 

Love to all and (((((((hugs))))))) xxx

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Re: metastatic breast cancer with cutaneous mets.

Thank you stresshead for the info and update. You and Marirose are breaking new ground here..........pioneers. It helps knowing that the effect can take some time to see. It's just nice to know. It's the same with the radio I had, but I didn't know, so I got quite depressed. Then after 6 weeks my patch began to shrink and soreness went away. Wish i had known that at the start. It may not last forever, but I can have another go apparently, although I hope to put it off until really necessary. Sounds the same with ect. although you can have more treatments. rBut also the good effects can last a long time, which is good news! We have all fallen into the world of taking each day as it comes, and I hope each day is a good one for you stresshead. Helping your daughter this weekend should be fun, and how nice that she is moving into her first real home. i made a cardboard box house for my little 4 year old grandaughter with windows and little curtains. She loves it but said what she really wants is a REAL house..........and REAL babies. She loves bathing the dolls.

 

Marirose..........I hope stresshead has helped you to relax for now.........it will take time, but the effect can last a long time. Good. i hope you have had some deserved rest........it has been bucketing with rain here, and parts of London are under water. What happened to June???

 

mo                xxx

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Re: metastatic breast cancer with cutaneous mets.

Hello my fellow skinnies and everyone else sing this thread. Great news to hear Marierose is doing well after ECT...good for me now i have a 'mate' in that particlar club.

On that note, i saw my onc yesterday and i told him what my ect surgeon had said about they just monitor by looking and he said that is because biopsies are no good because the cancer will still be there..it may have killed some off in areas but cannot get rid of it: i  knew all along is is a palliative treatment but still 'hit home' when he said that. He also said it can take a long time to take effect and it can last a long time too...again it is just a matter of monitoring it. My stomach and back now look as though i have had loads of henna circles tattoed on but my reconstructed boobs are still a mess, raw, scabby and leaky...sorry for the gory details.

He told me not to worry about tumour markers and said i was doing as well as could be expected. On the contdown to my scan 0n 4th July now...absolutely dreading it, especially as i already know i have visceral mets. I have been told  I am worried that i have few/no treatment options left and nothing is ion place for when/if carbo stops working (or i reach the max number of cycles) have again been told to cross each bridge as it comes, which drives a control freak like me mad!! Anyway, 4th cycle of chemo on friday and then a weekend of chaos helping my daughter move into her first real home.

Love to all.xx

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Re: metastatic breast cancer with cutaneous mets.

I see, Marirose. The standard of local support is so variable. Some are lucky, others not. The dressing nurse you mention......Hull based?......should be experienced and have some tricks up her sleeve! But do self refer to the local tissue viability nurse as well if you feel you want further help or advice. We would all be cheering you on from here! Things should settle for now though as you get much needed sleep, and don't forget to eat well too! Keep hubby busy between his cups of tea! For me it is a good sign that you have felt able to post on here.........I thought you might be too tired. Amazing how far you have come with this. I am sure it will take time for it to have an effect, so relax now. Have a well earned rest!

 

Haven't washed up yet.......bother. Goodnight all,

 

mo         xxxxx

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Re: metastatic breast cancer with cutaneous mets.

Hi again

DBNO they didn't exactly say how long it takes but I will get an appointment in the post to see the dressing nurse and I see surgeon in 1 months time. 

Mo i am not sure about after care here they are rubbish I had to go and ask them for help with my ulcers and got in touch with Tissue viabily through me asking about them because our Cancer Support group Lady who is a retired nurse gave me the number and I asked the gp nurses for a referal. They did say I could self refer if I needed them again.

 

Love and (((hugs))) xxx

 

 

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Re: metastatic breast cancer with cutaneous mets.

Thanks so much for bringing us all up to date, Marirose. i have been thinking of you since Monday........we all have. The treatment sounded very efficient, and the surgeon very nice. i'm glad you had a good team around you. And so good that you were able to go home. A good sign. Now just try to grab sleep where and when you can. I don't like being on my back in bed either, but you might get used to it. I did with a frozen shoulder a year or two ago.Fingers crossed now for the coming days. I hope you have some good backup locally to help you.

 

Best wishes to all skinnies. When will it stop raining? But everything so green and lush, better than dry and brown I suppose.

 

mo               xxxx

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Re: metastatic breast cancer with cutaneous mets.

MArirose
It's so nice to hear from you and that things went according to plan and you are back home it all sounds scary but obviously the way forward with treatments now.
Fingers crossed that it all heals and makes you more comfy.
We don't want Maria getting jealous over windy Miller either.
Take care xx☺☺
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Re: metastatic breast cancer with cutaneous mets.

Hi Marirose

 

Good to hear the treatment's done, not too painful and you're back home. It's interesting to hear what happened. Did they give you an idea of how long it will take to work? I hope you see good results soon.

 

Best wishes.

X

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Re: metastatic breast cancer with cutaneous mets.

Hello to all skinny friends 

I wrote a long post yesterday it would not send so I messed about and then lost it all so here goes again.

 

The hotel was a good idea but not so good at this one our room was near the restaurant and the noise stopped me from dropping off so then my mind started to come alive I didn't sleep at all. The hospital was great it used to be a private hospital so the ward was single rooms with en-suite.Everyone was nice and were all on first name terms. The surgeon came early to see me and marked me up for the operation because there were so many spots he joked about it looking like a map he wanted me to stay in over night because I had come a long way. They prepared me with white stockings gown and Karen my nurse said she had not heard of this proceedure ECT so it was a first for her. I had all the proticol filling forms in giving list of tablets and Maxine the anesthetics said with all my tablets I should rattle. She took 2 goes at getting the canular in because I had something in my vein that was not safe. Well I was fitted with pipes all over the place ECG and such like. I really did not think I would go to sleep and I would be awake while they did it. I woke up to find it was all over.

The ECT is an electric needle that pulses and injects chemo Bleomycin into the skin met the Surgeon explained it does not stop me from getting more skin mets and I would be allowed 4 more treatments.I was tied to my bed because they had put a machine onto my calves it felt like a blood pressure band on both legs first one then the other.

The surgeon came to see me he said it all went very well I had not lost much blood and they had given me a large dose of morphine and painkillers and they would monitor me and because I was first in if all was well I could go home at 6.00pm. So I managed to get back to my own home.

I have not had much pain yes it is sore but manageable but I was told by the surgeon I would need to lie on my back and I found that so hard to do I didn't sleep all night again.My heels were hurting with the pressure on them and so last night I put a pillow under my legs and it worked I slept at last now I feel rough.A big change from yesterday when I spent time in my garden planting geraniums.

 

I hope it has made it more clearer about ECT and I thank you all for your kindness and best wishes it is people like you that help me through it.

 

Janice I know what you mean about us having all this toxic chemicals injected into us maybe it will be a good thing for you to find a nice holiday in the sun as long as you wear high factor sunscreen wear a hat and stay i the shade you should be alright. Then after your nice rest the powers that be may have found you a new treatment. Take care sending you (((((((hugs))))))) xxx

 

Well friends again thankyou for your support and Carolyn I still cannot sunbathe topless and Windy belongs to Marie she gets very possesive with him.

 

Love and (((((((((hugs )))))))))) to all xxx 

 

 

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Re: metastatic breast cancer with cutaneous mets.

Hiya marirose
Hope u comfy and not in too much pain . Thinking of you and windy Miller is waiting for you in the cyber cafe ...and sends his love too !!!!
Loads of hugs💖💖💖💖💖
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Re: metastatic breast cancer with cutaneous mets.

Marirose
Hope u have had the treatment now, relieved and pain free.
Loads of hugs and think about sunbathing on a lovely beach with Palm trees and windy Miller serving you a Bailey's with ice and a nice piece of carrot cake .
🍸🍷🍩🍰🍦🍨xxx
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Re: metastatic breast cancer with cutaneous mets.

Evening Marirose

Good luck for tomorrow.

Carolyn

Pleased your scan results were good. Now you can relax and enjoy the summer. Shame about the weather.

Hugs everyone. Linda

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Re: metastatic breast cancer with cutaneous mets.

Marirose,

 

Best of luck on Monday!! We are all thinking of you. An overnight hotel was a good idea. You won't be too tired at the outset and it cuts the travel. I like the sound of the new pjs!

 

Lots of XXXXX

 

mo              more xxxxx

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Re: metastatic breast cancer with cutaneous mets.

Hello fellow skinnies

 

Janice - it's nice to hear that the break from chemo has enabled you to enjoy a holiday. I'm on my 5th chemo in 5 years too but I've had some nice gaps along the way and Eribulin was so easy for me. I'm finding the Paclitaxel rather taxing though. I can understand how fed up you feel at the prospect of another.

 

Marirose - best of luck for tomorrow. You must have a mix of feelings about it but hang in there while it takes time to work. As Carolyn says, we'll all be thinking of you.

 

Love and hugs to all.

xxxxx(((())))xxxxx

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Re: metastatic breast cancer with cutaneous mets.

All the best with your new treatment, I have never heard of it like many others,hope you will let us known how you get on.

 

I have been given a break from chemo was feeling really down when I saw onc.last and she could see I needed it. Just got back from a week in Cornwall beautiful place but  not so good weather, thought about going abroad but too hot this time of year, no pleasing me is there but it was nice to be away from everything. Two letters from hospital waiting for me I am back on 28th, I have had 5 different chemos in 5 years I told onc. toxic poisoning would get me before the cancer she actually said I had a point.  I just feel if I go ahead with the next one I will still be back where I am now in a short time,nothing works for long.

 

Anyway good luck Marirose hope it works for you.

 

Take care.

 

Jan