Long story but I would like your opinions please

alicki

Hello, 

Yes, and I'm in one of the best healthcare systems in the world after the US!

My path report (had it re-checked) came back with exclusion for Paget's disease (did I ever say I had that?), and any kind of lymphangitis carcinomatosis (scientific name for IBC apparently...)

It did come back with Immune markers for small T cells. 

Lymph nodes are still up, breast is swelling and deswelling. 

But I might be a bit of an exceptional case, because I have had 2 negative MRIs, 5 negative ultrasounds, 1 negative mammo and a weird path report. Something is going on, what is a mystery. I'm even beginning to think of cutuneous lymphoma. Even Dr. Google can't solve this. 

The hospital (mad BSurgeon) wants me to adopt a wait and see approach (are they mad????) but my dermatologist and London private breast surgeon will take over now. God this is going to cost me money!!

IBC is sneazy, but if it's that, it's being incredible sneazy. 

So, I still have two dermatologists and one breast surgeon on my side. Will see. YOu get to a stage where determination to get to the bottom of things takes over from fear.

alicki

Hello, 

I wish a good weekend to everyone!!!! Keep your spirits up!!!

take care,

alicki

kjsimpson

Thanks, All!

I have been enjoying life this weekend as close to normal as it seems it will be for the next several months.  Watched my son play in a baseball scrimmage with his new community college team, took a trip to Cabellas (love that place!) and bought two snuggly new pullovers, and had a great chat with an old friend.  Gotta love normal!

Itsmyjob, you are so right.  We need to count our blessings for catching our IBCs earlier than many will catch their cancers.  I wouldn't have gone in for a mammogram for years without the visible symptoms.

By the way, I've noticed that after just 10 days of chemo that there seems to be noticable reduction in thickness and orange-peel affect.  Keeps hope alive for a complete cure!

Hope everyone else is having a peaceful weekend. 

kjsimpson

By the way, has anyone found any liquid (other than milk) that tastes the same after chemo starts??  Everything except milk tastes funny.

alicki

Hi kj,



Just one question, where was your skin Thickness and orange peel effect? Diffuse or just in one area? Did you have any other symptoms.



What made then biopsy further to the MRI, just the skin thickness or something else they found?



When they biopsied, did the cancer show up straight away on one biopsy?



I only have this is one area but still very concerned.



I'm still looking for answers.

Thanks,

Alicki

kjsimpson

Hi Alicki,

It started off in one area on my left breast as a rash about the size of a half-dollar coin.  First noticed the swelling (not the orange peel).  As it got worse and started to expand, I noticed the orange peelishness when the swelling was thickest.  I first thought it was just a summer heat rash (noticed it in the middle of July and when it started growing instead of resolving itself, I started to get concerned. 

They biopsied because, in addition to the 'rash', the lymph nodes in the area were extremely enlarged. They weren't sure it was IBC until after the biopsies.  But the radiologist said that there was only a 'remote chance' that it wasn't some sort of breast cancer on the day they did the mammo/ultrasound.  That is why they went out of their way to get me in the next day for biopsies.

I hope you get some answers soon. 

alicki

hi, 

Thanks - I will know more tomorrow. I think the only way to exclude is to ask for additional biopsies. 

Please keep me with you in your prayers.

Alicki

alicki

Hello,



Just dropped by to say that the 'not knowing is killing me' . It's just so hard not o know - you can fight something you don't know



Alicki

amykins

Hey Kjsimpson,I went through chemo last year.The only thing that didn't taste too weird was apple juice,ginger ale, sometimes smart water,coffee and tea. I also lived off of apples,apple sauce, chicken noodle soup, turkey and mustard sandwich. I ate with chopsticks and plastic utensils.No metal.I hope this helps and you find something you can be satisfied with.

alicki

Hello, 

Update:

Absolutely hopeless. he said that he didn't want to take any more samples and in his opinion, it's was a mild infection. I begged for more samples and he just said no. Which now leaves me with England and preparing a trip there next week. If the IBC specialist in the UK confirms, after taking a biopsy, that it's nothing, then I'll settle for that. Meanwhile, at least I have my appointment booked. Now I need to translate the path reports and everything.

What worries me is that one of my breast is BIGGER than the other. I really need to get some answers.

Alicki

kjsimpson

Thanks, AmyKins.  That is about the same that I am figuring out. I hadn't thought of eating with chopsticks, though.  That is a great tip.  I like chopsticks.

kjsimpson

Hi Alicki,
That must be so disheartening. I hope you get some answers in England.  Keep your chin up!  I know that is so easy to say and so hard to do.  I'll keep you in my prayers and good thoughts.

alicki

Hello,



I will!!! I have become stronger after realizing that fear could kill me. My situation is weird and I need a specialist in IBC to look at this. The one positive point is that all tests done so far have shown no indication of IBC (2 MRIs) but I'm not satisfied with the Swiss pathologists because they haven't seen many cases. The doc I'm seeing is TOP NOTCH in IBC in UK and even if this is going to cost me a fortune, I know the job wills be well done.



The hospital dermato in Switzerland so taken aback by my determination said he would do another biopsy but wanted to schedule it for 30.09. My appointment in England is on 23.09. Results 48 hours later.



My gosh, I hope it isn't IBC but in this experience I have learnt that you need to FIGHT and its that s FIGHTING spirit that will keep you going.



I hope your treatments are going well. I know its not easy and I admire your courage.



Lets keep in touch!

Warm wishes and prayers

Lara

kjsimpson

Great attitude.  I hope it isn't IBC.  But you can handle whatever it is!  So, stay strong and let us know how the appointment goes next week.

alicki

Hi,



I did the CA 15:3 test yesterday, I went to do it in a lab and the results were ok. I know that it doesn't have much value it is not high but I suppose it just gives me a little hope.



Leaving for England tomorrow

Morning. Spent yesterday translating docs into English. I just want to get a second biopsy and US. Hopefully I will get answers.



How are you coping?



Take care

Lara

alicki

HI,

So went to London, still am in London. Lymph nodes are back to normal. Left breast is still slightlz enlarged but apparently, top notch IBC specialist says that this is a result of inflammation of lymphatic channels further to an episode of acute mastits (no longer in pain, that-s over).

Regarding biopsy,  he didn-t see the need (but asked if I still wanted it) and was offering a punch biopsy when in Switzerland they were ok for an excisional one. So back to the dermatologist in Switzerland on 30.06 to discuss whether we do a biopsy or not. He was ok to do it for my peace of mind.

The fact that this top notch doc confirmed what a radiologist had said in Switzerland makes me feel better, although checking the Ultrasound report, I noticed that the Swiss are more precise that the UK specialists!!!!

I think the next step is to monitor this left breast very carefully to see if any changes occur.

Hope you are all well

Alicki

DiddleyDoo

Just got the call ...

Benign, benign, benign - and I am done.  No more poking, prodding or needles.  Mammos every 6 months, and the more sensitive diagnostic ones (b/c I'm lumpy - lol), but that's not a problem.  All is good - yay!  Thanks for your help and support through this madness.  I really appreciate it!

 

Alicki - it is sounding like good news for you, too!  I am sorry for your long journey, both in time and distance, but am glad for your results.

 

KJ - I'm still reading your blog.  You are one tough lady and have the best attitude.  I'm glad you are seeing the positive results of your chemo and am also very happy to see all of the support you get.  Love the hat in your school board pic!

Petitegal127

DiddleyDoo:  I am so happy to hear you got good news.  Way to go girl!  

alicki

Hello,

Well done! This is fab news. nearly there myself, (I hope). Just final biospy that I want to do in Switzerland and careful supervision of breast.

Kjsimpson: could you re-post your blog address?

Thanks, Alicki

DiddleyDoo

Thanks so much Petitegal and Alicki.  Thank you for the support during this time and I wish good health to you both!  Best, Tracy