I was told when I was diagnosed in Nov 07 that one did not get IBC twice. I had chemo, mastectomy and rads but frequently complained about how sore I was below my scar. I was told to get used to it. It got so bad it blistered and bled and finally went back to ask what I should do. A biopsy has resulted in that the cancer had never gone and I have to start Chemo again. Meanwhile I asked them to look at my other breast as I was concerned it was going red. A mammogram revealed all clear. Bone scans, CT scans all clear. However I know what I am seeing and that I have IBC in the other breast - it is now hot swollen and nipple inverted. I persuaded the surgeon to do a biopsy and it has come back as all clear although he agrees with me it looks like IBC again.
It is only 2 months since I was sent an all clear letter. I cannot believe I have got to start all over again, what worries me is that if it had never gone in the first place where else may it have spread too. I thought I had beaten this. So much worse knowing what is coming. Feeling rather low - sorry
Penn1
Penn - so sorry to hear that you are having to go through this… when i was first diagnosed the team at my unit told me that i would be unlucky if it came back in the other breast - but did admit it was a possibility…
i know there are at least a couple of people on here who have developed ibc in the other breast - and jackie developed skin mets in the original breast soon after her first op… (that is what it sounds like in your original breast as i know skin mets can bleed if untreated…) have they done an ultrasound on your second breast…? i know with me nothing showed up on mammogram but it did on ultrasound…
once again - so sorry that this is happening to you again and hope that you get some answers soon…
Theresa x
Hello Penn
Theresa has come up with some sound words, maybe things you have already had done but maybe not.
At least now they seem to be on the ball with what is going on, and fingers crossed for you that your fears are unfounded.
Take care and let us know how it goes
Carole x
Hi Penn1,
No wonder you are feeling low. You must be wondering how bad it can get right now. I wish I could say something uplifting that would make you feel better but I know when I am going through my own dark fears words don’t help much.
As the others say, hopefully it won’t be as bad as you fear. It does sound as though they’ve taken you seriously and are looking after you. My initial diagnosis was confirmed by ultrasound too so if they have already done that along with the other tests and found nothing, take heart. If not, then it’s another avenue to explore.
I really feel for you having to face another round of chemo but you did it before and you can do it again. One session at a time.
Is your IBC hormone receptive or HER2 receptive so that you could have treatments such as herceptin to prevent recurrance or have you already been down that road?
Jan xxx
Hi penn1
It sounds like you’re having a really tough time at the moment. As well as the support you are receiving from your fellow forum members please remeber you can always call the BCC helpline to talk things through with a trained member of staff. Everyone working on the helpline either has experience of breast cancer, or is a breast care nurse, and will be able to offer you a listening ear as well as support and information if required. The number to call is 0808 800 6000 and the lines are open Tuesday and Wednesday 9am to 5pm and Thursday 9am to 2pm this week.
I hope this is helpful.
Kind regards
Sam (BCC Facilitator)
Thank you so much for all your words. I start chemo again on Thursday - I managed to bring it forward from 13th Jan to 31st December which I am pleased about but annoyed that my oncologist says that there is no lump in the other breast so I should not worry!
I spent Christmas trying to cope with weeping, bleeding wounds which are so sore but having to wear a bra for appearance sake. My oncologist also said that obviously some of the cells were resistant to chemo last time so I would need different chemicals. He said he would try taxotere but I pointed out that I had that last time. It does not fill me with confidence when he said that was good - obviously I had had no adverse reaction to it! What about the need for a different chemical? Anyone any experience with a need for a different chemo second time around? My thoughts go to JaneRA whose post I have only just seen.
Hello penn,
Sorry to read of your latest problems.
How long have you had bleeding and soreness under your mast scar? It sounds as though this has been left for some time but I may have picked this up incorrectly. The problem with IBC is that it attacks the tissues in skin layers, thus the bleeding etc.
A second bout of chemo could work really well, even if you’ve had taxotere before. However, as with most chemo, any tiny micro cell left behind, will grow back. I used capecetebine for a few months when my mets appeared and it worked really well but eventually they progressed again.
I’m not sure where you are based but would ask for a second opinion at the Marsden just for confirmation of your new treatment plan. I’m really pleased with how they are looking after me there.
Jackie x
Hi Jackie
I have had a pink band of skin which has been sore since the operation at the end of May 08. I kept going back but they said I would just have to live with it. It then started blistering in Oct 09, and bleeding. The blisters are spreading along the original pink band They took a scrape and gave me the good news that they were not cancerous and put me on antibiotics. By this time I had convinced myself I had an allergy to the prosthesis! I went back and asked if I could be referred to a dermatologist and my breast surgeon then did a punch biopsy which came up with the cancer. Nobody has addressed the pain or that I am bleeding however! Do my first chemo tomorrow - I am going to have taxotol and carboplatin. My concerns are that the blisters are spreading so fast. I felt really fit before starting chemo last time and it worries me that I am feeling so low before my first one tomorrow. Anybody had carboplatin?
Jackie are you saying that skin mets are what I have got - did you have this blistering and bleeding. The nurses told me skin mets is just when you get cancer somewhere totally different from the first one - I am so confused.
Hi Penn,
My skin mets are like a 4" eye shape above and below my mast scar. They began to blister a few months after first appearing and have been bleeding on and off for about 4 months or so.
Herceptin has stopped them progressing (or herceptin and aromasin?)in that they have not spread any further, but they are beginning to look worse (bleeding/redder). They do not hurt at all.
Originally I only had 4 tiny spots along my scar line, but when the capecetebine failed they did progress. I am due to have them surgically removed on 26th Jan and hoping the herceptin will still keep progression under control. My mets have never been tested for cancer although I had regular CT scans when on the cape/lapatinib trial. Mine are very localised and only in the skin, not attached to the bone.
If there is any other help I can offer please ask away.
Love and take good care
Jackie xxx
Hi Penn,
I’m sorry to read that you’re having a bad time at the moment. I think I remember your name from a while back; i was diagnosed in December 2007 and so we were having the first lot of chemo at around the same time ( I initially had AC and Taxotere). I haven’t been diagnosed with IBC but i do have experience of skin mets. Mine presented as a red patch at the side of my mx scar just 6 weeks after I’d finished radiotherapy.As the mets progressed they became quite itchy. I had the oral chemo, Capecitabine, combined with a trial drug called Sutent, which cleared up the mets for nine months.When this combination stopped working I was offered surgery. I had diep flap surgery, where they took skin and flesh from my tummy to rebuild my chest (unfortunately I didn’t have enough flesh to make a new breast, so it wasn’t like a “breast reconstruction”). I will be starting on Gemcitabine & Carboplatin chemo in two weeks mainly because a lymph node above my clavicle was affected.
I know how you must be feeling about the prospect of more chemo. It’s rubbish isn’t it, but let’s hope that it works well for us!
Take care and good luck with your treatment. Liza xx
Hi everyone
Thanks for your comments - I did manage to get an appointment for a second opinion at the Marsden - went on Monday. They have confirmed that the Taxol and Carboplatin is the right way to go and that I should have a PET scan to see how things are going. They think the appearance of what looks like IBC in the other breast could be caused by a blocked lymph node in the middle of my chest, which they would hope would clear up with the chemo. They did say the chance of getting it all with chemo this time was unlikely, as with the first time, and that I would probably need a third round… not quite what I was hoping to hear. However, at least they said they would have given me this mixture, followed by capecitabine and then there were new trials that may be available later. Hope you are all doing ok xx
Hi Penn i hope that the new chemo is being kind to you… will you be going back to the marsden again or was Monday a one off…? I do hope they are right about your good breast and you see some improvement there soon…
Theresa x
Hi Penn
How rotten that you’re starting a new regime, I hope it is an easier one for you and doesn’t leave you feeling battered.
Good luck
Hi all
Have not been on for a while - now I feel it is IBC permanent rather than twice. I have been told it is incurable which did not leave me feeling very happy to say the least. The taxol/carboplatin dried up my skin but did not change the appearance of the other breast although they still say it is not cancerous. Two months after having finished the chemo, the wounds are opening up again and now I am going to start on capecabitine. It is beginning to feel that I will be permanently on chemo. Anyone else like this? Sorry a bit down.
Penn
So sorry hun that you are suffering still from this and that you are continuing with chemo, I don’t have any experience like this but someone else may be along soon to advise. Lots of hugs x
Penn so sorry that you are going through all this and that I had missed your latest post… Jackie isn’t getting on here much these days and she has tended to be our expert on skin mets but I do think she has had to be on treatment non-stop since she developed her skin mets…
Theresa x