Long story but I would like your opinions please

alicki

Hello, 

I'm hangiiiing! More blood test results next week and the biopsy is being re-checked by two other pathalogists and I want a comparative one done because in my case, there seems to have been a peak of something (pain, swelling, inflammation) which seems to be getting back to normal but I'm taking no chances. At present, I have 4 possible diagnosis and a weird biopsy result, none of which are IBC but again, not taking any chances. It took me 5 docs to get a biopsy! 

Keep talking to your body and you are the General. I am glad that you have lots of friends and family close by. I will keep you in my prayers and hope that you keep your fighting spirit up and your humor! I hope that you are in excellent hands. 

Are you taking any alternative medicine to help out with the effects of chemo? I don't know how it works in the US but here in Switzerland, and with the consent of traditional doctors, we try and balance out chemo with acupuncture or homeopathy. 

Anyways, keep us posted.  Bonnie on this forum has been out for six years. I don't know anything about the treatments for IBC but she's very resourceful.

Take good care,

Alicki

DiddleyDoo

Hi Alicki and KJ - I think that you are both spot on with all of the 'self-talk'.  I love how you talk about your chemo KJ.  That is the way to think of it.  You mentioned once on your blog that sometimes when people tell you that you are strong and you will get through this that you think "what other choice do I have"?  The truth of the matter is you actually have quite a few choices.  They may all blow, but you still have them.  I think you are making great choices with the way that you are responding to all of this.  I have long been with the understanding that while we don't always have control over what happens to us in life, we do have control over how we will respond to them and that the response we have has tremendous influence on the outcome.  I love seeing all of the support you have around you.  I imagine that it makes this road easier to travel, although it will not be easy.  You will have good days, though.  You just keep on keepin' those troops in line, General!

Alicki - Of course you are welcome to the thread!  I'm sorry you are going through such a mess trying to figure out what is going on.  It seems pretty crazy about the antibiotics.  It sounds like you are going through a much higher level of insanity than I am.  I was very happy with the path report from the first biopsy and thought I'd just be getting the thing taken care of when I went to see the breast surgeon.  My breast surgeon just wants the additional scans and biopsy (I think) b/c she's just not 100% comfortable with the first results, which were done elsewhere, after she examined me.  I believe she's trying to be thorough, which I do appreciate.  It's just a long time to be in this grey area and I still have symptoms so it's not always easy to keep out of my thoughts.  Then Friday just put things off even longer, so I was quite disappointed.  Anyway - enough of that!  What is this inflammatory disorder they think you have? 

alicki

Hello,



Thanks for accepting me on this thread. So here goes:

4 exploratory diagnosis So far: jessner- kappfonof (or Something Like that), some f0rm of dermal lupus, one I can't even remember which include a mucinous b9 condition and radiologist says post mastsis, (but never had any real redness nor fever, just pain for 5 weeks non stop that I cried 3 weeks of that because it was so bad).



They found some mucin which is freaking me out (thanks Dr Google!) with lymphatic invasion but no cancer cells! Hence my insistence to re-run new tests and get the biopsy re-checked by two other pathologists. Will be done on 17th and if the Swiss refuse, I ll go to the UK but I mentioned that once and I think the dermatologist felt that he could do a better job than the Brits !!! (Ha, ha)







However the biopsy was taken during the inflammatory process and given that the pain has gone completely and swelling has gone now considerably, we have no idea what we are dealing with.

I ve had various bouts of inflammation in the last six months (tummy, breast, neck) so it could be immune condition.



3 top nouch Radiologists have excluded IBC but I'm getting the biopsy re-checked by two others and am going to insist to have another one done by dermatologist. Weirdly the dermatologists seem to know more about IBC than the breast surgeons!!!!!!



Good that you BC is being througher. MRI are ultra sensitive so the MRI might be better to do biopsy with.

Me impossible because nothing shows up on Mri. But I do have a patch of thickened skin under areola so will tell them to take sample from there. And then more waiting!!! Biopsies here take 10. Working days (not kidding!). That gives me time to send mine to the US to have it Checked by an IBC clinic!

DiddleyDoo

Hi Alicki - Based on what you are saying, it sounds like you had a bout of lupus mastitis.  With lupus, you can have so many issues - but I'm sure you are already aware of that!  I'm really sorry to hear this diagnosis.  My biopsy came back as inflamed cysts and an abscess and I didn't have a fever, even with an abscess!  I've also heard other women say they didn't have fever with mastitis, so it could just be that you didn't have one or that it was only a minimal change, that you didn't really notice.  It sounds like you've had a good work-up by some very good doctors.  Be careful about getting too many biopsies.  I would be cautious about even one more than is absolutely necessary, as they can make future imaging difficult.  I'm really only agreeing to this second biopsy because my breast surgeon wants it, based on her impression from my exam and the MRI.  As you noted, MRI is very sensitive, but increased sensitivity can also be problematic in that it can give false positives - so it might all be for nothing.  Anyway, I am quite optimistic that we already have the answer to what is going on with me, just that my doctor needs convincing.    I hope you can get your answer soon.  I think since you are not progressing, you probably don't have the mean "C".  I understand IBC to be a very progressive disease.

alicki

Hello,



The blood tests underway Will say if its lupus or not. Doc doesnt think so and theres no evidence on scans.

i have no idea what lupus is. Doesnt sound nice though....if you re feeling sorry.



I mixed up, they found small leucocytes dermal infiltration (not lymphatic invasion) and minor mucin. But what is interesting is that the pain has completely stopped, and swelling abated but skin is still funny and one breast is fuller. My breast used to be so swollen that the only way of getting rid of the swelling was to lie on my bed and raise my arms above my head. Then I could literally feel my lymphatic system working and the lymph nodes in my arm pits evacuating the edema. It burnt like hell. None of that now.



The radiologist also thinks it could be mastitis (has no clue what form) and given I tend to inflame in different parts of the body that could be it.



Thanks for the idea of lupus mastitis, will ask docs to check that out. And then we ll see.



Trust me to get a 'wolf' in my system....



I had a bout of chronic fevers for some time in April-May and was checked for lupus. The docs think its immune but until I have pathological proof it's not IBC or that they cant name what i have, I won't give up.



What you say about two many biopsies is true but I need just one more on the thickened area post inflammation to see if there have been any changes since the inflammation.



Not everything is IBC and we need to know that.



Glad you re in good hands too, its just the waiting that kills us.



I lit a candle (catholic) in my favorite church for those of us in treatment or looking for answers.



I have never been very religious but I had an interesting experience the other day when I was close to despair and crying and just ask the heavens to help me (I have a very universal concept of God that transcends religions) and someone must have heard me up there because the skies cleared a little in afternoon when there was no expectation they would and hope returned.



Hope MRI goes fine



Take care,

Alicki

DiddleyDoo

Oh, I misunderstood.  I thought you said that you had been diagnosed with Lupus.  I certainly hope you don't.  That is a tough disease you treat your entire life and has multiple manifestations.  All autoimmune diseases can present in numerous and varied ways, but there are therapeutic strategies to reduce the number and severity of flare-ups.  I am, of course, hoping for b9 results, as well as a negative Lupus, for you but also that you find your answers soon.  I know it can be very troubling.  Thank you for thinking of all of us and lighting a candle.  I hope you can find some peace in knowing that you are in His hands.

itsmyjob

KJS I have been following you on your blog.  Hit by a truck is so appropriate, my problem is trying to plan for which day the impact will be felt.  I told my husband that I swing from feeling like I'm in slow motion and the world is whizzing by to an impatient, angry tyrant.  He pointed out that I am taking steriods and could it be a result of that?  A little research and sure enough, I think I suffer from some roid rage.  

A big fear is that all the side effects of the chemo will have a culmulative affect the longer the infusions go on.  

Good luck to you.

cider8

I just want to pipe in that it was my dermatologist who diagnosed me. Well, she was the suspicious one who ordered the punch biopsy. My MO, RO and PS (via email) missed it. Granted, I'd already had a skin sparing BMX with DIEP recon. And the IBC showed up on the contra lateral breast. A lot of the warning signs were missing; I even dismissed them after looking at symptoms. IBC can be so freaking sneaky.

Petitegal127

I have been following you girls and keeping you in my thoughts and hang in there.

DiddleyDoo:  I was checking in to see how it went last week and see it never happened for you  Sorry to hear you have to wait till next week.  That stinks and I feel for you with the waiting is so brutal.  All you want is an ANSWER as to what the heck is going on.  That was a harsh comment by your friend and insenstive too.  I will keep checking to see how you are doing.  Hang in there girl!

DiddleyDoo

Wow cider8 - thanks for piping in.  This does give one pause.  IBC can be sneaky.  Your story makes me feel even better about my thorough breast surgeon.  I don't balk at anything she wants done, as I figure one who sees as many breasts and configurations of disease as she does needs to be listened to.  It is sobering, however, to learn of how you were diagnosed, as I don't have frank, in-your-face presentation, but there are some things that give me concern, such as a flattened nipple that now appears to be inverting somewhat, as well as the breast feeling heavy and full and being larger than the other  (which is not my normal). 

I'm sure this information will be helpful with alicki, too, as she is having a tough time trying to figure out what is going on with her breast, as well.  Thank you - it's very helpful to hear of others' experiences.

It's interesting that your IBC is ER+/PR+ and HER2-.  That's not as common as the opposite scenario.  You also had IDC with the same phenotype, which is also interesting from a pathological point of view and wonder about the relationship with how you presented in an "abnormal" way.  How are you doing with your treatment?  (P.S. I'm from the St. Louis area - grew up in Florissant.  I miss MO.)

DiddleyDoo

Hi Petitegal - thank you so much for your kind thoughts and words.  I am a bit worn out by the whole thing and just want a definitive answer.  It is what it is - good, bad or indifferent.  I would just like to know so I can take care of it.  It doesn't make me feel too great to think there is an abscess in my breast that isn't being treated.  I now have a new (fun) symptom in that my back (left upper quadrant, if you divide your back into 4) hurts if it is pressed on, even lightly, and also if I take a deep breath.  It's not excrutiating, just a little discomfort.  Anyway, it makes me concerned that if it is just the abscess that it might be getting worse.  Ugh - I do see my breast surgeon today.  I already had the appt before the delayed biopsy and her nurse told me to keep it, so I'll go and maybe I'll get a bit more information. 

kjsimpson

Itsmyjob,

The biggest problem for me was the bone pain.  The nausea was easily mitigated and lack of appetite wasn't too bad (I have ample reserves), but the bone pain was crippling at times.  Yesterday, the nurse said that Claritin the day of the Neulasta shot (the day after chemo) and for the days following should help.  I'd forgotten that, so hopefully it won't be so bad next time.

I am feeling much better today (day 5 after chemo), though am taking the day off to get some much needed rest.  I went to work yesterday for several hours and that wiped me out.

Been told that the side effects are cumulative too.  That is why I'm trying to figure out what works as quickly as possible.  Staying in a positive mood certainly helps.  Though sometimes that is easier said than done.  ;-)

I am ER-, PR-, and HERC+, so am getting Herceptin, Carboplatin, and Taxotere.  I know they all have other names too, but those are the names for them that I remember.

Hope you are feeling better!  Glad your husband has a good sense of humor.

kjsimpson

I was born in St. Louis.  All of my side of the family is from there.  Uncle was Chief of Police in University City and my grandmother lived in Creve Coure.

kjsimpson

Diddley,

Hoping you get some answers today.  Stay strong!

alicki

Hello, 

My breast has swollen again today and lymph nodes in affected breast are up and nipple area has been swollen for a while.  I have 0.25cm thickness in one area of the breast (has been there and of course, no one has thought of taking a sample from there but just where it was inflammed. THe biopsy results are weird, inflammation and potential for immune disease.  I still don't have my blood test results. And my breast surgeon who is convinced I just have inflammation and is ignoring my calls. Switzerland is small, so not easy to get hold of other breast surgeons....

This is getting difficult. 

Please could you let me know HOW LONG you had to battle (for those of you who have been diagnosed) before finding answers and being diagnosed??? This is week 8 since on-set of symptomes.

Tomorrow, hopefully, I will have the blood results. Then next Tuesday, the double-check on the biopsy by my dermatologist who I will try and convince to take one more sample from other area. 

THen as back up plan, I have made an appointment with IBC specialist in the UK (yes, I literally have to go to the UK to see a specialist!). I will go anyway. I am blessed with a wonderful childhood friend who is going to help me pay for the expense. 

So if all goes well, at the end of the month, at the very latest, I should know what is going on. 

I had a flare up of inflammation earlier today that lasted about 30 min, it was throbbing in the lower tummy. 

I'm sorry if I'm ranting about myself whereas some of you are dealing with the disease. I just feel so lost with no one to talk to and so far away from you all. 

I will keep you all in my prayers and if you can, please pray for me. Kjsimpson, I admire your strength. Let's keep talking to our bodies. 

DiddleyDoo I hope you get your answers

Cider 8, thanks for that info about the dermatologist. What happened once you were diagnosed. Did you get in touch with a breast surgeon or did your dermatologist recommend someone? 

Thank you all for being here daily, it's a way to share our strength and hope.

God bless,

Alicki

kjsimpson

Alicki,

I don't know if my experience is 'normal', but I went from what started off to be a routine mammogram to rule out cancer on August 15th, to biopsy on August 16th... to first day of Chemo on September 5th (3 weeks). I don't know if the slow speed you are experiencing is due to your health care system or what. All I know is that my doctors went into overdrive once they got the initial biopsy.

Will keep you in my prayers, for sure!  Don't consider yourself ranting, either.  You are your own best advocate and if it is IBC then every day counts towards having better chances for cure.

DiddleyDoo

Hey! Small world, KJ. My fathers side is from University City. I've had family in Creve Cour for as long as I can remember.



I think I'm almost done with all of the tests. My doc told me today that the area of interest looks like a cyst but it appears to have some protein in it so she wants to get it biopsied. She doesn't think it is anything alarming but feels it warrants some additional investigation. She also did a FNA of the area with the mass so we"ll get a final check on that, as well. I'm feeling like this is almost over and that it is all going to be fine. Thank you all for your support and well wishes during this tough time. I can't tell you how helpful you've all been. I will certainly let you know the final results and I'm not going anywhere. I just wanted to let you know what I learned today and thank you all for the support you've given me.



Stay strong Alicki. I think you'll get your answers soon. Meanwhile I will pray for b9 results for you and a successful therapy with fewer side effects for you KJ, itsmyjob and cider8. You are all in my thoughts and prayers.

itsmyjob

Alicki, 

For me, I had an extremely sensitive breast and slight reddening the beginning of July, I had thought it was a spider bite.  I made an appointment for July 3rd with my family doctor intending to speak with him about the possibility of a baseline mammogram since my sister had been battling breast cancer for over a year and she had tested positive for BRCA2 mutation.  He gave me a 10 day course of antibiotics and scheduled a mammogram.  I waited until the 24th to contact him regarding the mammogram results and to report there was no change in my breast, I thought I would have heard from him by then and realized that my mammogram results had been sent to his wife (she is practice with him) by mistake.  He referred me to the breast care center on the 5th of August where I had a node biopsy, mass biopsy and skin punch.  August 7th I had my family counseling and started chemo August 19th. 

Its a complete shame that you must travel out of the country to get proper treatment, but if that's what must happen then it must!  Its obvious that no one can care for or understand your body like you.  I'm so sorry you're not getting the support and answers you need.

God Bless!

alicki

Hello,



Thanks it's my job and kj. Now I'm really concerned because for me this all started on 15th July and the only biopsy they did (mass biopsy) came back with inflammation and lymphatic infiltration of the derm and mucinous deposits. The earliest I can get another biopsy done is 17th or 23rd September. So that's over two months from start of symptoms. And if its IBC, goodness knows only when they will start chemo. I know we re all different, but scary all the same.



Thanks for your support

Alicki

alicki

Me again,



3.17 am here and I can't sleep.

Does anyone have any tips of how to deal with fear. It's literally paralyzing me.



Many thanks,

Alicki

kjsimpson

Sounds like great news, Diddley!  Tough to wait, but worthy.

kjsimpson

Alicki,

Deep breaths, trust in God knowing your needs and heart, and fake it until you make it.  Seriously.  You need to keep telling yourself that you are stronger than whatever this might be!  I have faith in you.  Hang in there and take deep breaths! 

alicki

Thank you. I will trust in God and life. I will be strong. It's the waiting for answers part which is difficult.



Day by day with your support and care. I hope I hope I will be able to be there for you too Kj.



Will try to sleep now for two hours with your words.



Alicki

kjsimpson

You already are, my friend.  :-)

DiddleyDoo

Thanks KJ - It does make it easier.  A plus to all of this is that I will continue to be followed closely, per my bs, since I do have these other issues with cysts and fibrous tissue that could obfiscate something more troubling.  So, provided I get the all clear, I will then just continue with close follow-up through this breast cancer center, which I think is probably what I need. 

Meanwhile, I wish I could take some of your burden for you.  How is the bone pain?  Does anything help it or even just take the edge off?  After I had that hemolytic transfusion reaction I told you about (that gave me the awesome "tan") my bones ached something fierce and that was without any additional cytokines promoting blood cell production.  Advil did help take some of the edge off.  I generally took 600mg (3 pills) at a time and took the fast acting.  Baths with epsom salts and a few drops of lavender oil were helpful, as well, just because it relaxes the whole body.  There is also the immense therapeutic benefit of massage.  Especially for cancer patients.  A certified massage therapist may be able to offer a number of benefits, including enhancing your immunity.  Always in my thoughts and prayers, Tracy

alicki

Hello,

Update - apparently it's not my immune system....so I guess that leaves either weird inflammatory things or IBC. I don't know anything else at the moment. Tomorrow or next week, will try and push for other biopsies. My breast feels like I'm nursing, it had nearly gone back to normal and today and yesterday, I felt inflammation in all my body, and the breast has become swollen. My lymph nodes are up to again and much more than before.

So how on earth do you diagnose IBC or some other weird inflammatory condition if it doesn't show up on MRIs. I think I will ask for several biopsies to be taken. There's weird stuff in my last biopsy and I fear that the dermatologist missed 'the hot spot'. 

Ladies, if you are praying for me, /thanks Kjsimpson, then please ask the Universe or the Lord, /whoever/ whatever you believe in, to help me find answers. 

Thank you for your support. One question. I haven't eaten a thing today, because I no longer know what to eat in case in may flare up the IBC I think I have. Can anyone help out? sugar is off bounds of course. 

I pray for you all, and wish you the best for your treatments. Thanks Kjsimpson, for your words last night (in was 3am for me). I feel strong again, thanks to you and determined to find the root cause of the problem. But  I still rely on sleeping pills too...

I'm ranting again..

Alicki

kjsimpson

Glad you got some sleep, Alicki.



Got some good news today regarding the biopsies of the rogue enlarged lymphs in my neck and right side. Benign! So, the cancer is still stage III. Not IV.

alicki

Hello,



Thanks excellent news! Well done for catching so fast!



Th Swiss Breast surgeon says that I should come back in a month to see if things have worsened, that sometimes you need to something blow out before you can deal with it. Seriously??????



Dermatologist - pathologist (he does both things) on Monday and the IBC specialist on 23rd in the UK. Should have stated with him...pffff. Then we ll see. Hopefully on Monday, I can get some additional biopsies done on affected area.



Alicki

DiddleyDoo

That is really fantastic news, KJ!  I am so happy for this news.  I hope that you are feeling better from you first chemo round.

Alicki - I sure hope for good news for you and that you find your answers quickly!

itsmyjob

That's great news KJS!  

Alicki, I pray that you can get the answers you need to help make yourself well!

Just a random observation..

Last treatment was my second and I had a different Onc than normal and he asked me if I noticed any difference since the first treatment.  Well, I had to think for a minute, but yes I had, not nearly as such a heavy feeling, it doesn't feel swollen anymore, no more random phantom pains.

 It made me think about IBC in general. I know we've all looked at survival rates and been disheartened. But I have been thinking of how unique what we're going through is. First of all, our symptoms are noticeable and palpable which is definitely out of the norm for most cancers.  And it also makes me think of how easy this could have been misdiagnosed, I'll refer to our friend Alicki as a shining example of this, and in the past how treatment would have been probably very inconsistent.  I thought to myself that if it were 20 or 30 years ago and my symptoms were lessening and/or disappearing and the doctors only recommended say 4 rounds of treatment at which point I felt better, the mammogram showed any cloudiness was gone, it wouldn't be so far of a stretch for me to have been sent home and classified as in remission.  And what would happen then?  Would I be there person to run back to the doctor if I had the same symptoms thinking that it could be cured with a few rounds of chemo?  Or would I wait longer until it metastasized to another part of my body thinking the solution would be so simple as losing my hair again? 

This is a pretty sneaky enemy we're fighting here.

Hope you all have a great day!