Urgent Advice Needed

Ling29

Hi, I posted in Not Diagnosed but Worried a few days ago but things moved so fast and I was advised to post in this board directly. 

I am 29 and have no family history of BC. About 2 weeks ago i felt a hard lump in my left breast and didn't pay too much attention to it. 3 days after, the hard lump grew so much that my left breast was almost twice as large as my right, and my nipple became inverted.  I had no discharge and almost no other symptoms at the time but I went to see a doctor immediately.  I was arranged to have mammography and ultrasound the next day, but only went for the ultrasound because the lump was so obvious.  After the ultrasound, I was immediately booked for a biopsy 2 days later (last friday). 

My breast kept growing throughout the time, and within a few days, I became very fatigue, I didn't have a high fever yet, but my temperature was touching the low feverish region. Also, I always feel slightly better during the morning, and worse throughout the afternoon (body temperature peaked usually peaked in the late afternoon).    

Because my breast lump was so big, when I did my first biopsy, the doctor was so concerned that she booked me to see a breast surgeon straight away. From then, I was scheduled to a MRI this Monday, and another appointment with the same breast surgeon on Monday.  On Monday when I went to see the breast surgeon, he told me the result is confusing and did another biopsy with me straightaway. I went back to see him this Wednesday, and he told me that most of my breast lump actually didn't have cancer, and they didn't find any cancer at all in my second biopsy. But they did find some cancer in my first biopsy, but the sample was really small, so it looks like my body is reacting violently to the tumor and my actual cancer was hidden deep inside the breast so that they couldn't get enough sample from the biopsy. With the MRI image, they think they have a better idea where the tumor is and he booked me for the third biopsy this thursday (yesterday). And I also saw my oncologist this Wednesday. 

Meanwhile, all the treatment plan is rolling out even without the result of my last biopsy. Because my first biopsy result suspects me to have IBC. I am scheduled to have my port installed next Monday and have my chemo straight after in the afternoon, even without a chemo class (my first chemo class is schedule right after my first chemo). I was just informed that they are not sure whether my third biopsy result will be out yet but they want to start my chemo anyway next Monday. 

With the advice from this forum I start to think how to search for a second opinion. I live not far from Stanford Cancer Center and I was hoping to get my second opinion from there. But I was just informed that they won't do a second opinion once I start my treatment, and it is unlikely I get anything from them within a week. So if I start my treatment next Monday, I won't get my second opinion from Stanford. My oncologist is suggesting me to stick with my plan and start my chemo as soon as possible, and at the moment, I have agreed to stick with the plan.  But I am really lost and am not sure I've made the best decision.  I appreciate things are rolling out really fast for me, but that fast?  

And lastly, a bit more about my symptom. I felt really tired and sluggish, even out of breath from time to time. I had fever of above 101 in the last few days, but again only in the late afternoon. I never develop the orange skin, and didn't have any rash before my biopsy (the skin is bruised and a bit red after 3 biopsy, but i think it is normal). Amazingly, since yesterday, my breast started to shrink a bit, and I felt a little bit better too.

    

ibcmets

Ling,

Your symptoms appear to be very aggressive.  My breast did get larger than the opposite one and I had what looked like a bug bite that itched on the breast.  I did not have a fever, but found my blood pressure had sky rocketed a bit.  I had to wait about 4 weeks before ultrasound & mammogram.  They knew right away before biopsy from the ultrasound.  IBC forms in sheets and your breast tissue will become much more firm than your normal tissue.  I also had a 3.5 cm tumor as well which is not typical of ibc.

I was also encouraged due to the aggressiveness of the disease to start chemo within 2 weeks and  most places would not do a 2nd opinion in the middle of treatment.  I'm in the East Bay of Ca probably not far from you as Stanford is close enough to me.

PM me if you have any questions or want any recommendations to doctors.  I'm very happy with my oncologist & surgeons and I have done well since diagnosis of 6/09.

 Terri

TammyLou

I did personally have a second opinion.

I initially thought this meant sending some slides, etc.; however, I wound up going...because my regional cancer center has a specific protocol when it comes to treating patients.

And, it took about 3 months to actually get my treatment started.  Cuz' it was a DIFFICULT sort of thing to pin down...cuz'  I'm odd, blah, blah, blah.  Goofy cancer.

On the other hand, most current treatment options are pretty standard.  (I took Herceptin offline.)

As far as I know, in the situation you've described, chemo first is a good option.

tl 

lorieg

My symptoms appeared virtually overnight as well.  I was nursing my second child and woke up one morning with a huge "lump."  It took at least a week until the redness/pain and other typical IBC signs appeared.  Although I wanted to go to MD Anderson (IBC clinic) at diagnosis I didn't want to wait to start treatment because of the aggressiveness of IBC.  I did go to MDA when I did not repsond to the initial 4 months of chemo. I am a little confused about your biopsy results.  Do you have a copy of your pathe report?  Did they talk to you about receptor status? If you don't have a copy of your path report get one.  Also have you had any staging scans like a PET/CT or bone scan/CT chest and abdomen?  It is difficult enough to deal with this diagnossi when you know all the facts, but it sounds like some facts in your case are missing.  PM me if you have any specific questions. 

Hugs,

Lori 

TammyLou

I wondered about that too, Lori.

I guess that scans would not change the protocol, but it is something that I had / wonder about.

Very often when the cancer is advanced, Full body scans are done to try to determine the stage of the cancer...has it metastesized to other body organs?

My feeling (how I FEEL) is that the distinctions between cancer stages are getting a little bit blurry at the high end.   The bigger question is what is the spread AFTER chemo...and less, what was it before.   <-- That is strictly my impression...not founded in data, etc.

An inference of this gut response is that prognosis is becoming much more predicated on response to treatment as opposed to what size it was at diagnosis.

Defining the patient as "stage IV" at diagnosis is helpful?  I'm starting to think more not.   Patients with small tumor burdens that are highly treatable...begs the question..."can we downstage the patient?"

I'm leaning more toward yes these days.

tl

3jaysmom

i had a very different situation, as far as tx. is concerned. my tumor kept growing at an alarming rate;while they dragged their feet trying to save my breast. i had decided to have a BMX; because of its' aggressiveness. it nearly doubled in size by the time my surgery was discovered. the onco i reached out to saw me asap. he advised i didn't wait to do chemo; as it still didn't grow bigger than 5cm.. so, i had the surgery. they found "questionable " results in the 2nd breast path. report; and one node in the arm that the cancer was. i was really glad i had both breasts removed. because of other health issues, and the fact that the cancer was plastered to my chest wall; as well as the "questionable" cells were found there. ive never regretted doing the bmx. nor of having surgery as soon as we saw how aggressive it had been. i had the protocol chemo A?C; followed by taxotere. no bad enioughs/e's except in beg.. i reacted badly to Neulasta.. so, it was dicey for awhile. a close brush, but im here, and doing well. the deciding factor in chemo was that they found i was her2neu; which means chemo...

    i don't know if any of that comes into play for you. every case is different; so, get your results, and listen to the BS, and onco. my problem was my bs was more involved in trying to save a breast, for me.. i was looking for symetry, which was impossible, with no recon. i wasn't going to try to wear a heavy pros. which i woul have to.. for me, it all made sense. i just needed to listen closely to WHY the recommendations were being made, and my decisions were made accordingly.  i wish you well in all the thinking (and praying) if that's your way...come back and tell us all of it, when you get the info. these ladies know their stuff..esp with tx options.. if i can help, PM me anytime!        3jaysmom

Ling29

Hi Thank you all so far for your advice so far.  I had some update yesterday afternoon and have posted in my other thread, but when I tried to update here, the forum said I've posted too much within 24 hours and have to wait. 

 Anyway, here is some update to my situation, the nurse from my oncologist's office was really nice to call around for me about second opinion, In the end we found that the UCSF Cancer Center in San Francisco can take second opinion even after I start my treatment, so I decided to stick with my plan and start my chemo next Monday, and I will seek second opinion from UCSF after I start my treatment. My oncologist really seems to want me to start chemo straight away, and when I asked whether my third biopsy result will be ready when I start my chemo she said she doesn't know, but she would like to start chemo even without it. So I guess they are treating me pretty seriously. 

Lastly re Lori's question. My second biopsy which they took some sample of my breast and the skin has shown no sign of cancer at all, but here are the words they used in the Miscroscopic Description for my first biopsy: "A few cores show focal poorly differentiated ductal carcinoma with associated angiolymphatic invasion. Although difficult to be certain, it is possible that the majority of tumor is localized within lymphatic spaces, correlating with the clinical impression of inflammatory breast cancer".   And my final diagnosis is: "Focal poorly differentiated ductal carcinoma with angiolymphatic invasion, associated acute and chronic inflammation and stromal edema (core biopsy of left breast mass).  

They didn't talk about receptor status in my first biopsy probably because they didn't get enough sample from my first biopsy (hence the third biopsy).  So my doctors don't really have a very clear picture of my tumor yet but they still want me to start my chemo straight away.  I don't have a PET/CT scan yet, I only had MRI scan and X-ray, my X-ray is normal and my doctors used my MRI scan to guess where my tumor is and performed the third biopsy.  

mrsnjband

Ling,

Sorry to hear about your IBC dx. As you know by now IBC is very aggressive. I had terrible itching for about 7-10 days before I got the "rash". My breast had enlarged in size & texture which is typical for IBC.  It took 2 months to find & diagnose the cancer.  The first biopsy, mammo & ultra-sound were all negative.  Thankfully my breast specialist didn't brush off my symptoms.  It did take the MRI to locate the cancer & get the possitive biopsy.  My actually tumor was only 3mm. I also turned out to be triple-neg as well, which very aggressivel

I initially want to go to MD Anderson's IBC clinic but I didn't want to delay the treatment. I had four rounds of dense dose AC & then 8 Taxol, & 3 1/2 Taxotere.

I agree that you should go ahead with the treatment plan.  I'm glad that you can get a second opinion as well.  I just wish that when I was in treatment I had a place like this to come to for advise.  So feel free to send me a pm.

Sending love, prayers & support. NJ

spitnspunk

I'd get the 2nd opiinion as putting off treatment for a few days shouldn't make that much of a difference..I can't actually beleive they are pressuring you into starting chemo Monday when they sound like they aren't even SURE you have cancer since one biopsy said yes, but second said no. You have a fever? The swelling is going down? Could you just have mastitis or an infection? Sometimes that mimics IBC....sorry, not trying to confuse you but whenever someone pushes treatment in lieu of a second opinion, I'd be wary.

TammyLou

I went and read about IBC (for a different reason.)

I am a layperson so I have difficulty understanding the latest thoughts, etc., sometimes.

However, the best understanding I have is that Chemo First! is having the best outcomes these days, particularly with IBC (and other locally advanced cancers.)

Apparently, the spread is evaluated AFTER the chemo, and that helps determine the treatment path.   <---key pivot point

So, it is logical, by that perspective, that 2nd opinions would be generally desirable (after chemo is complete) as opposed to the case where the person has early  breast cancer that has already been given induction chemo.

-----------

I did not have IBC.  I had Locally Advanced / Non-IBC subtype Stage 3C with chest wall fixated matts, etc.  ER/PR neg and HER2+++

Similar, in some/ many (?) ways, but not same.

When you have surgery, it is likely that some extra tests can be performed.  My best understanding is that OFTEN the dermal lymphatics are involved, but it is possible to have IBC without it.  The underlying proteins / genetics (scientific mumbo jumbo) is determined and THAT helps distinguish IBC from Non-IBC breast cancer.

IBC is a particular molecular subtype.

However, the treatment is (generally) exactly the same. 

-------------

However, in my own treatment path, after chemo = surgery, then rads.  Many (locally advanced) patients also have follow-on chemo vs just the rads.

tl

P.S.  and just so you know...I often talk with/ at the IBC ladies because I am a real odd duck in the breast cancer world.  My cancer was moving like a "spider web" [as my onc described it] in on around my chest wall, front and back...sheets...with no detectable mammography lump, etc. but also not detectable in the dermal lymphatics.   So, it quacks like a duck, but it's not technically a duck.

Ling29

Hi All, again, thanks a lot for the advice, and I am relieved to think I have chosen the best option available to me. There is one more question I wish to ask though.  

One thing that confused me a lot is my breast was shrinking since Thursday, and now it has reduced its size a lot, but at the same time the skin became much redder (my skin color was normal for quite some time while the breast was growing).  Also, since the breast started to shrink, I also felt much much better physically. Before I was really tired and sluggish, but now I am almost feeling like normal again, and have most of my energy back, my fever is also much better. I haven't taken any medicine since Wednesday except some Tylenol,  has any of you experienced anything like that before?  Is it a  good sign or a bad sign? Thanks!

 Ling 

lorieg

I have a friend with IBC who took motrin for a week and all her clinical IBC symptoms disappered.  She was almost sent away to follow-up in one year but luckily they did one last u/s and subsequent biopsy andshe was diagnosed.  Your path report sounds conclusive to me, but you need another biopsy to determine receptor status.  It is very important as it will change what happens in your chemo plan. Also you should have staging scans (preferrably a PET/CT per the leading world expert in IBC, Dr. Cristofanelli) soon to know where you stand systemically.  Ir DOES make a difference in the treatment plan.  And lastly, yes you need to start chemo ASAP.  IBC is very very aggressive.  Survival rates improved once they realized this and started doing chemo then surgery.  Surgery first with IBC is a HUGE no no!!

 All that being said there are long-term survivors out there and you can be one of them!!  Consider a trip to Fox Chase or MDA at some point as they know IBC better than anyone.  Feel free to PM me with any questions.  I have made it my mission for the last 16 months to know everything I can about this disease.  Check out ibcsupport.org.  It is agreat message board and source of info.

Best of luck,

Lori

lorieg

And yes, systemic evaluation of spread is often evaluated after chemo and before surgery but staging scans at diagnosis is important as well.  IBC is either stage IIIb or IIIc or IV.  We don;t know what it looks like in an earlier form.

Letlet

Ling, how are you? How was chemo on Monday? Sending you positive thoughts...

ibcmets

Ling,

We are all thinking about you and hoping your chemo treatments went well.

Terri

Ling29

Dear all,

 Thank you all for the warm messages. I had my port installed yesterday morning, and then started my chemo in the afternoon. My chemo class was actually happening during my chemo session and I have a little better idea on my treatment plan now. 

I was given Ariamycin and Cytoxan in my first chemo, and I will receive them in 4 cycle every two weeks. Because of the short gap between each of my chemo, they are going to inject me Neulasta and Neupogen to boost my white cell count today.  After the 4 cycles of Ariamycin and Cytoxan, they plan to have another 4 cycles of Taxol after, but that will depend on how I react to the previous chemo. 

 After all, I have to say chemo is less scary than I have initially imagined. They have snacks and drink and even DVD player for you to kill your time there. And so far my main side effect is fatigue and some hiccup, I think I can manage them.  

I will also see my oncologist this afternoon again, hopeful she will have my last pathology report with her, and I can finally have some clear picture on how bad is it.  

 Big hug to you all!! 

Ling 

ibcmets

Ling,

Remember you should be able to ask where ever you had your tests done for a copy for your files.  When I get my pet scans done, I always ask for them to mail me a copy so I can be prepared for my oncologist meeting.

Glad you're getting through this.  Don't be surprised at the major fatigue that may come a few days after treatment.  They may have given you decradon with chemo and this is a steroid that keeps you up and feeling pretty good for a few days.

Email us or me if you need any help.

Hugs,

Terri

julie75

Hi, Ling:  How are you doing?  How is your chemo going?  Last, but not least, did you resolve your health issues with your employer?  If I've asked too many questions, please feel free to take all the time you need to answer.

Sending more thoughts of strength your way.

{{{HUGS}}}

Julie

Jen40

Hi Ling

I had the same reaction when I first started my chemo of AC, my breast starting shrinking right away but in between treatments, mine were every three weeks my breast would start to get red and warm right before a treatment then go away again and so on till it finally stopped around round 3 or 4. I think it is good news as in my case the chemo shrunk my tumor in my breast from 9cm to 1mm. I also had 4 rounds of Taxotere. Good luck with your chemo.

Ling29

Dear all, I appreciate so much all the warm welcome I receive so far.  I saw my oncologist yesterday, and she told me a few more details of my last pathology report.  I am apparently ER-/PR+, my HER2 is equivocal, and they will take another week to fish whether my HER2NEW is + or -.  They didn't find cancer in the lymph node from the biopsy,which is good news. And my oncologist has ordered a full body CT scan and bone scan for me to be thorough. 

 

She did tell me my cancer is extremely aggressive though, my proliferation index is 80%, she said many only have 5-10%. Does anybody have the index that high?  

 

Lastly I spoke with two lawyers today bout my job, they both recommended me to start working as soon as possible and then tell the information about my cancer to my employer as soon as I started. Because legally I am only protected until I become an official employee. I am going to seriously consider it but I will wait a few more days to to how my body handles the chemo sessions.  I am very tired in the last two days, and if I am so tired all the time I don't know whether I can even manage to work.   How many of you manage to work throughout your chemo? that must be so tough!!!

 

Best

 

Ling 

lindaa

Glad you made it to the ibc board Ling.  I posted on your other thread but this is the best place from now on.  I learn so much from everyone here, sometimes more than I want to!  i don't know what my "proliferation index" is, and I don't think I want to.  I'm in treatment and doing what I can so I see no point in 'scaring' myself over details I can do nothing about.  I did not get a second opinion right away and will always wonder if I should have.  Mine is in my lymph so I have a lot of work to do.  Clearly where you are being treated recognized it and got you into treatment asap.  I got caught in my local health care network and it was horrible - 1 week for this, see this guy in 2 weeks, i see him, they schedule my biopsy 3 weeks out.  Meanwhile my breast was doing this crazy pulsating thing, and they all kept telling me that cancer doesn't do that, that 80% of these thing are normal.  By the time i found a place that would see me right away, I was like, 'just stick a needle in me already!'  So as shocking as this rush to treatment seems, it really is the best thing to stop this thing.  i have no doubt mine entered lymph while i was caught up in an inefficient system of doctors, because i felt it go there.  I'm with Dana Farber now (second place after my first treatment path didn't do much for me).  I think you'll do fine on chemo.  Go ahead and start that job, whats the worst that can happen?  You may have to walk away from it, but then again you may not.  Many, if not most of the women I have met on here still hold down full time jobs. 

Ling29

Hi Linda,

I am so sorry to hear your story and how your original treatment was delayed. But it looks like you are in good hands now.  I do appreciate the speed of my treatment so far, having lived in England in the last 10 years, and have experienced the inefficiency of the NHS system there, this is the first time I experience American medical system. Maybe I am lucky, so far I am really grateful to all the medical staffs who have treated me, I don't think none of the have delayed my treatment so far.

I do wish I can start my job too. I am pretty weak this morning from my chemo on Monday, and I was thinking, can I really handle the job with this status? I was really in doubt of myself. But now I am feeling a bit better, it's amazing how your body can change your mind set.  I am feeling a bit guilty toward my employer though, they have high hope on me, but I don't think I can fulfill my full potential there, at least in the next year. I know it's not my own fault, but I just cannot help thinking about it.  

julie75

Ling:  Hang in there.  I agree with Linda, start your job and just see how it goes with the chemo.  And please don't feel guilty about your employer.  I just can't imagine that they wouldn't work with you on this!  It's definitely not your fault, even though it's so easy to think so!  Will they let you work from home, as in telecommuting?  Anything is possible.

More thoughts and prayers for you.

I'm off to Maui, HI, on 12/17, and will be back on 12/24.  I'll check back around Christmas Day.  Try and get some rest over the holiday.

Julie

ebann

Ling29: I too had IBC in 08 was NED for 1 and 1/2 years and now the BC has spread to my bones. So back  I go. I am so sorry you are having to go through this. Mine went very fast too, it was like pet scan, muga scan, class, port then chemo in 4 days from my results. Did 6 months of chemo then had surgery, my tumor was 12.5cm yes  the size of a softball. To think it shrunk. My onc said she was amazed. I was not able to work cause I was a teacher. Just finally got the energy back after all this and got a job to tutor and now I cannot teach again. That made me sad cause I enjoy teaching. You can do this. I know it is scary and once things get going you will realize it is doable. Manage the SE's take your nausea meds Emend is the best, senkot for constipatian, claritian and alieve for your neulasta shot the day of and two day after. Drink lots of water and eat on popcicles or ice chips while having treatment helps with mouth sores. They do have a mouthwash for it as well if you develop them or thing you are starting too. It works wonderfully, taste terrible. Do not be afriad to ask for anxiety meds, sleeping meds if you need them to help you get through all of this. If you have any questions just PM and I will be happy to respond. I wish you the best. If I can beat this I know you can do. Take care of yourself. Your number 1!

ebann

.

Ling29

Hi Ebann,

I am so sorry to hear that you were not able to work through you chemo, but getting back to be a tutor is probably a good stepping stone.

As for myself, I am actually feeling much much better today, this is the third day since my chemo and I am almost feeling like normal. I have to say yesterday was the toughest so far cause I just felt so so sleepy all the time, but it seems to get better now.  I had to go to the hospital in the morning to have another baseline mammograph done today, and my husband can only gave me a lift in the morning. So I took the bus back all by myself without any problem. I am quite happy about it.

Also, while I was waiting for my mammograph today, my HR called me and asked me how I was doing. I told her I think I can move my start date till 01/17, the date slipped out of my mouth really because I felt that I have to give her a date at this point. But I guess at least I have a goal to reach now, I'll try to arrange my life back around the chemo and the work.  

 I am starting a feast right now for my 4pm full body CT today, so will be back to the hospital in a few hours. It's amazing how many tests do I have to do these days, and I also have a bone scan scheduled next week.   But hang in there, i think I am doing all right. And big hug to all of you too. 

weesa

Ling, I have been following your story closely, and although I am not an IBC survivor--I 'm invasive ductal--, I often sit on the edge of my chair, anxiously looking for a communication from you. You are good about keeping us up to date, which I thank you for, because I can tell there are a number of us who are following you closely, and worrying a bit.

There is one important concern of yours I can address, and that is your 80%  proliferation rate. Mine was 75%, and after dose dense AC and then Taxotere and radiation, I have had an umremarkable survival, more than 8 years now.None of my doctors seemed concerned about my 75% and I am not sure still that I understand what if anything it means prognostically. I think by "proliferation rate" you are referring to the Ki-67, which some hospitals don't even test for. Maybe there will be sombody coming along here who can advise both of us on the meaning of our high scores. But what I really want to levre you with, is that I am doing fine despite my 75%.

Hugs and best wishes, Weesa

TammyLou

Some of that immediate breast shrinkage may be due to the massive bolus of steroids that are normally delivered with the chemo.

tl

Ling29

Thanks Tammy for the information. My husband and I have decided to start to record my left breast properly from now by taking picture of it, I guess we are both checking it so often but sometime it's hard to tell whether it was smaller/bigger, redder/paler. So picture will be the proper proof. 

 And also thanks you so much Weesa for the encouragement and the information about proliferation rate, it is certainly a relief to hear that you are doing so well. And I am so glad that you have your remarkable survival after 8 years now.   My doctor didn't really explain properly what is proliferation rate much either, she just told me it's very high, but didn't give me any indication whether it's a good thing or bad thing.  What I know is mine really grows super fast.  I will certainly appreciate if anyone else has any more information on it too. 

 Ling 

Gingerbrew

Hi Ling,

You may want to place a tape measure, ruler, or some other sort of measure on your chest to help give perspective to you photos. 

You are on the same chemo protocol I was. Everyone reacts differently and you are young, but I found that the side effects of chemo were cumulative and became more severe as I went on. You may want to take that into account in your planning.. 

I too look for  your posts every time I log onto the message board. You are in my prayers.

Blessings Ginger

TammyLou

Dear Ling,

I managed to work through most of my chemo...but I have a very, very understanding employers.

 HOWEVER, the radiation was another story.  

I expect that your rad plan is going to look more like mine because of the IBC factor.

During chemo, you can take cell boosters to help your body keep going.  This is not what goes with rads.  Cell boosters are not an option.

Basically, the blood cells enter the radiation stream every time your heart beats.  Cell boosters cause BABY cells to jump out of the bone marrow faster (and subsequently be killed)...so, your immune system is going to be on its own.

I was able to work for the beginnings of rads, but there toward the end...not so much.

For now, you'll just have to see how you do.  (Everybody is different.)  When you get to rads, I'd advise having a serious talk with the radiation oncologist to see if you can get a better estimate of what to expect.

tl