Urgent Advice Needed

lindaa

Ling,

I am like you and also tried to avoid reading too much.  I am also big on research so eventually that got the best of me.  Much of what I read was like kick in the stomache.  Then I started finding more survivor stories, and that is where I hang my hat.  I have learned that most stats are very out of date, using data from 10 to 30 years ago.  They also don't always discuss things like other factors like previous illnesses that may make treatment more difficult, I have no pre-existing conditions except for being overweight.  I have good health care and great family support so I feel that puts me on the + side of any bell curve they may come up with.

leisaparis

I second that. They ask me how my health was before. I can honestly say I was pretty damn healthy, till I got cancer. Except for a little overweight. Hardly ever went to the dr. Would get a cold, but never anything serious. Always doctored myself. So when I got this, they were surprised I didn't really have any kind of a medical file. It was like.......well I've never really been sick.

Ling29

Terri, I remember you (and many others) giving advice to me when I first came to this forum. And now I start to understand things more, I am certainly glad if I can reach out and help the others. I just shared the article in a new topic so that more people can find it. The more i can help the better I feel. 

Linda and Leisa,  I second that too. I am young, healthy, fit and never have many health issues before. I have no family history of cancer. I never smoke and don't drink much, by any measure I am in the low risk category. But things happened, and I would like to think because of my health history, I am also on the + side of the curve too. By thinking like that, I can actually manage to read articles about IBC without being disturbed with all the statistics too much.

 I just came back from the appointment with my onco, and she finally confirmed my IBC diagnose.  It's kind of funny, she first said Yes and No when I asked her whether I really have IBC. But in the end had to say yes to my question.  She said that my skin biopsy didn't behave like typical IBC (because it is clean), but with all my other symptoms, she would still call it IBC.  I didn't really feel too much, as that was what I expected anyway.  My onco was really happy about the size of my breast though, my left breast is now almost the same size as the right one (it used to be at least twice the size of the right), and the redness is also getting much better.  I can still feel a very large lump in my left breast though, so I asked my onco how can I know that my tumor is actually getting smaller. She told me we won't know until further imaging, but she would only recommend another MRI imaging after I finish all my AC chemo. Overall, I was quite pleased with the visit, my onco gave me a hug every time I visit her, which is nice.  

julie75

Ling:  It's nice that your onco hugs you - things like that really help during times like this.  Agree with lindaa, it's good not to "overread", thought that's easier said than done. 

I am another person whose family had no history of BC, and am healthy and fit, with no previous health issues.  Who knows why these things happen?  

Julie

txred9876

Ling,

 Sorry it took so long to get back to you but things have been kind of hectic. What I meant by my comments is that like you the skin biopsy was negative/inconclusive but when my symptoms started disappearing with the chemo treatments they gave me a definite diagnosis of IBC. Once I had my mastectomy they also confirmed it pathologically. I did not want to subject myself to anymore punch biopsies when I was going to have to have to do chemo anyway. The treatment plan would be the same either way and after 4 biopsies I didn't want anymore.

There are many IBC survivors (I know of some very long term survivors...upwards of 20-30 years!) and I feel that data/statistics are not as accurate as they could be because unless you get an accurate skin biopsy a lot of times you are not counted in the scientific journals as being one who has IBC even though you really do.

 WIthout the internet I would not have been diagnosed so I like to research for my own knowledge  you must not over react to anything you read becasue after all we are PEOPLE and not a STATISTIC!

I was fairly healthy my entire life until cancer (other then a l ittle overweight). Which is a big risk factor.

 I am glad you are doing well with the treatments.

Tina

Tundra

Hello lovely ladies,

 Sorry it's been awhile! I got wrapped up in moving apartments, treatment and work. 

Ling, I'm happy to hear that your treatment is going well and is being effective!

It's very cute that you too are into research. :-) I'm a research-head, but have also avoid too much research about IBC. But I will read through that article you posted.

 It's interesting to read this discussion of IBC diagnosis. Tina, thanks for your kind words -- yes, I've tried to focus on the positive aspect that it's better to have them treat me with the lightning-speed IBC plan, than to have had them react too slowly.

I'm just coming up to my 4th treatment of 12 tx of Taxol. So far things are going okay. I had some allergic reactions, but I've now been switched to an easier fomulation of it. My swelling and redness have also gone down -- even my good friend noticed thatthings are looking a lot less swollen.

No hair loss yet! Which I'm happy for because it's actually -22 C here right now! ;-) But I finally found a wig and am happy to have it for when the inevitable happens.

And yes, I too can be added to the list of "young and healthy but got it anyway". No real family history. No prior helath problems beyond asthma now and then. Healthy weight, eat healthy, etc. Quite a mystery.

Anyway, sending you all some good vibes. And cheers to the 20 and 30-year survivor stories!

Ling29

Dear all,

 Sorry to be away for a while, and I am glad that our little discussion is still going on. 

 A lot of things have happened since my last post, first I went to UCSF's Cancer Center for a second opinion, and the doctor there agrees with almost all the treatment plan my local onco set up, they only gave me a bit extra things to consider in terms of reconstruction, fertility and also I'll probably do an extra BARC test from there to see whether genetically I have a higher risk of cancer. 

Another development is that I have started my new job this Monday. YEAH! I was a bit nervous to tell my manager that I have breast cancer and I also have to take quite a lot of time off on my second day of work. But she is extremely understanding, and said that she will support me in whatever way I need. So one big relief to me, and I have been enjoying my new job in the last few days.

One support group from UCSF also found me a cancer partner, and I spoke with her for a long time last night. She is a local IBC survivor, 3 years out of treatment and has stayed NED since. It is so helpful to have a discussion with someone who has gone through all these things. But one thing she told me did alert me a bit. At the beginning of her treatment she was also on the same treatment plan as me 4xAC + 4 x Taxol for every 2 weeks, and she told me her inflammtory symptoms was also going away pretty quickly with the AC too.  But when she went to MD Anderson for a second opinion at that time, they MRI her breast and found that although the appearance of her breast has improved a lot, her actual tumour has actually grown in size. The doctors at MD Anderson then change her chemo plan to weekly which is much better for her.

Her story makes me a bit nervous. I always have the worry that I don't know whether my tumour is getting smaller. And my onco only agrees to have another MRI after I finish all my AC, she doesn't think it worth doing too much imaging. But my cancer partner's story actually make me wonder whether I should have a more active monitoring throughout my chemo, especially if I can adjust my chemo plan accordingly. Also, my breast shrunk really quickly with my first 2 rounds of AC, but after the first 2 rounds, when its size became comparable to my original breast, it stopped changing too much. I can still feel a big hard lump when I touched it, but the size of the lump is not changing much since 2 weeks ago. 

My next appointment with my onco is next Wednesday and I will really push hard to get a MRI scan as soon as possible. Meanwhile, I am actually seriously considering having a visit to Fox Chase or MD Anderson for a third opinion.  And I would appreciate some input from my IBC sisters, particularly on how often do you think we should monitor the tumour during chemo.

 Ling 

xtine

Hi Ling.. as you know I've been following your story since we are at the same facility. I just want to mention that if you are looking into fertility, UCSF is a really excellent place to go, and I would totally trust their advice. I used Dr Cedars for IVF 3 years ago (the head of the department), and it worked first try (though I wonder if it caused my cancer!).

I'm glad you got your second opinion, and have started your job. I hope your treatment goes well, and you are enjoying the fabulous weather we've been having!

lewima

I am IBC 3 1/2 yrs. now.  ER, PR and HER 2 pos.  I had dose dense AC-TH, Surgery, Radiation, Herceptin x 1yr. Oopherectomy (they said it helps my prognosis by 3-5%), and now aromasin.  I am back on the sites because I am having a lot of itching at the site of the initial IBC even though I've had bil. mastectomies.  Trying to find out if more itching is indication of a return of the IBC. 

 Just wanted to say that after I started chemo, within 3-4 weeks, my breast looked 'normal' again.  I kept thinking that it worked - the chemo.  Then after the mastectomies I was heartbroken.  I had 3 positive lymph nodes and micro mets in the breast.  It was considered a partial response.

I read all of the posts and I just marvel at what wonderful people we all are.  I used to say that I must have done something really bad in life to 'deserve' this, but you know, maybe through all this fog and all these tears we are all blessed in some crazy crazy manner that I've yet to discover.  Because none of us deserve this, and you all are wonderful generous caring people.  But right now, my hands and feet are killing me.  My joints always hurt.  I have had 4 broken ribs and a broken sacrum in the past year and a half, I took fosamax, then had two breaks, and then last year IV Reclast, and I still break.  I drink milk, I take 5000 ius of Vit D and 1600 of calcium.  Chemo was the easy part.  I knew when I was getting sick, stayed in bed, felt better, then got sick again.  Very predictable.  Now when I lay down at night, the burning sets in, the joints go crazy, (oh I forgot to say that I have also develop bursitis in my hips and arthritis in my right knee.)  So I have a lot of difficulty sleeping which adds to my fatigue.  I also have thyroid cancer and that also adds to the fatigue (they were dx concurrently).  I am not overweight, I was in great shape when dx, my bones were those of a 19-20 year old on my first bone density scan and now I have osteo- they say that I am doubled whammied because both meds for breast and thyroid cancer are bone depleting.

 Good luck to you.  Don't be afraid to let others know that you need help.  That was the hardest.  Learning to not worry about cleaning the house, cooking dinner, doing laundry and just shutting myself in the bedroon instead of getting frustrated when everyone else didn't know what to do.    I had a lot of fits because everyone else 'should know...', but they don't. 

 I'll shut up. 

Leslie

Ling29

Hi Christine,

Thanks for popping in to my little thread again. Yes, fertility is on my list of things to ask my onco next time, I'll see what can she advice, but I'll remember your recommendation on UCSF too. You comment on IVF did interest me too, I took oral contraceptive for the lsat 7 years, sometimes I do wonder whether it has anything to do with my cancer. But that's only past and will make no difference to my future, so I just stop thinking about it too much.

And Leslie, I am so sorry to hear what you have been through. I haven't suffered as bad as you, but at the worst time of my chemo, all negative thoughts did fly out from my mind, and I just try to reach out and ease some of the negativity. Please come to the board and reach out more often, because you will always find great people who has gone through the same thing as you and understand exactly how you feel, then you will gather strength from them too. I wish you all the best!

 Ling 

Ling29

Hi all,

It's been quiet on this forum these days, so I think I'll just post some update. Also I guess I need somewhere to write down my feelings too.

I was quite scared in the last few weeks even though I put up a brave face myself. In some sense I was more positive and optimistic when I was diagnosed, at least at that time I know I will be treated. But now with the treatment going, I started to worry about little treatment related things more and more.

It was all right when I have things to do, the problem is when I stop, then I started to ask questions in my own mind. Is my tumor really being controlled? What is the pain I felt this time, is it from the chemo or is it because my tumor has grown? I found it really hard not too think about these things.

One of the main reason I started to worry more is probably because my chemo is not responding as well as I've hoped. As I've posted previously, there wasn't any clear progression from my third AC, and I was worried that the chemo has only treated the inflammation but not the tumor itself. After hearing my concern, my onco decided to push my taxol regime forward without doing any more AC, and she also ordered a mammogram for me. The mammo results shown decreased density breast parenchyma but stable clustered calcification compared with my pre-chemo mammo, I am not 100% sure what it means, and need to confirm it with my onco in our next appointment. But in my understanding it confirmed my worry. Since the AC was not working so well, I was hoping the Taxol will be different, it was encouraging in the first two days and has softened my hard lump a bit, but then the effect stopped after day 3, I am now 10 days after my Taxol, the lump actually has harden a bit again, although it is still better than when I started the Taxol.  

I don't like myself being so obsessed with checking the lump in my breast, but sometimes it's just hard not to think about it. I am just at the beginning of a very long journey, and in a sense, I have just realized how tough this journey could be. 

ibcmets

Ling,

With ibc, doctors are usually pretty aggressive.  What made me feel better is the first year 1/2, I had Pet scans done every 3 months to monitor how things were going.  I was also concerned as the redness and slight inflammation continued throughout the first year of treatment, but my breast did lose the hardness & my 3.5 cm tumor was completely gone after chemo was completed in 8 months.  My onc did not have me concerned with blood tumor levels although he took and monitored them.  I never knew what they were and did not have anxiety over them as my doctor monitored them.  I did get copies of my test results immediately after each test to monitor myself and to be able to ask the right questions with my doctors.

1 1/2 years after diagnosis, I just had a Bi-lateral mastectomy 2 weeks ago.  I'm hoping this will eliminate the other cancer cells that were not caught during chemo.

Being proactive and having copies of all test results should help you maintain some control.

Terri

lindaa

God-is-good

I 'think' am a little relieved that your breast was purple while on chemo, as that has now happened to me.  When I was on taxol, before things got bigger again, my breast looked almost normal.  now it is big, hot, and hard and looks horrible.  I am trip neg so that doesn't help.  but your pet scans were good?  My last pet showed a spot on rib and new spot in neck, and that was while I was on AC which did nothing for me (ok, I lost 10lbs and was actually happy about that).  Iam on lxempra/xeloda and do feel a slight softening so far, but I just had treatment #2 yesterday so it is a little soon to tell.

mrsnjband

Glad to hear you are doing so well.  My IBC symptons cleared as chemo progressed, skin was discolored but smooth.  My doctor pointed out how the texture of my breast were softer, how she could remember that was amazing to me.  Sending my support your way!! NJ

Ling29

Bonnie, my sleep is still all right, I think I am anxious from time to time but luckily it hasn't affected my sleep yet. Also, I am quite relieved that I am working now, because when I have things to do at work during the day, I didn't have time to worry too much. It was mostly a problem when I stop. I guess if I've reached the stage of having trouble to sleep, I'll certainly try some medicine. Your description on how your chemo worked at first then started to get worse after day 10 really matches what I have observed in my last 2 rounds of chemo.  I'll see my doc tomorrow and discuss this with her, hopefully she will have something for me.  

Terri, I am really surprised that your chemo lasted so long. Is having 1.5 years of chemo the original plan? Or was it extended during the chemo?  Also, I don't know anything about blood tumour level myself, I have blood test every other week and they gave me all the results on time, but I'v never see blood tumour level in those results. 

Linda, how often did you get a PET scan? I was trying to get a CT/PET scan during the chemo but my onco only wanted me to have it when the chemo complete, before my surgery.

 Ling 

RosesNBloom

I am new to the discussion. I was diagnosed with IBC while still nursing and I have read that IBC is sometimes linked with breastfeeding. Despite the benefits of b/feeding overall, it may be that it was the factor that triggered my IBC. Upon diagnosis, my breast surgeon suggested I discontinue nursing immediately (his feeling was that the hormones which were supporting lactation, were also facilitating the IBC). He was correct in that I was ER+/PR+, Her2-. I had mets to both lungs at the time of diagnosis and I have been stable for one year while on Tamoxifen and monthly Zoladex. Any other mothers out there experienced onset of this disease while nursing? Also, any advice on herbal meds?

lindaa

Ling, my first CT scan and MRI was at dx.  The second CT was after 3 cycles of being on taxol/carboplatin and showed great reduction in my tumors.  I was dx with a breast tumor, lymph under armpit, along collar bone (which armpit and collar presented themselves during the few weeks it took for me to finally find a cancer/breast center that would see me and treat me asap.)  I also had lymph behind sternum. At dx my breast was slightly bigger, and had orange peel bigger pores, but otherwise looked normal.  My breast tumor was deep and very hard to ever feel, but they could feel the armpit and collarbone. 

As terri said I do feel that IBC must be monitored very closely and around 3 months seems right.  The biggest flub with my first onc, is that after my 3 month scan showed great reduction (and I feel that was my best shot at a surgery window before things got worse), I developed a small spot on neck. This was after 2 more cycles of taxol - I was sceduled for 6.  My onc was not concerned, so I wasn't either.  We actually went on to do the last cycle of taxol and this should not have happened.  Any sign of 'progression' - a new spot or feeling that a tumor you can feel is getting bigger means stop that chemo, rescan, and switch to another chemo asap.  A very harsh lesson for me to learn and a reminder to all that even a doctor that knows what IBC is can still be stumped by it.  We scanned at the end of cycle 6, about 5 months from dx, and it showed everything had gotten bigger again.

 My new onc at the IBC dept at dana farber, keeps a sharp eye on me.  She put me on DD AC, every 2 weeks, but noticed that it wasn't working after 3 cycles because my breast blew up while on it.  So that was only 6 weeks and I had another scan which showed the rib spot.  So 6 weeks plus the 4 for the last cycle of taxol was 10 weeks of treatment that wasn't doing anything for me.  What Bonnie said is important though, getting things smaller or stable is good.  Chemo doesn't always take all of the mass away.  I think that only happens to a few ppl.  also I am trip neg which can also be a fast mover like IBC.  If you really want a CT scan, I don't see what the big deal is.  If it helps reduce stress that is always a good thing.

ibcmets

Ling,

Actually my chemo lasted 8 months of TAC.  Mostly, I went every 3 weeks.  I've also been on monthly zometa since the start.  It was a year after chemo that I had the BMX.  I'm ER/PR+ and did really well with all treatment so far.

Terri

Ling29

RosesNBloom, welcome on board. I am afraid I cannot answer your question here as i was not breast feeding. But I am sure someone maybe able to answer it here.    

Terri & Linda, thanks for sharing your experience. Your description really demonstrated how different IBC symptom can be, for example, compare with Linda, I never have orange peel, but my breast was huge and red when diagnosed. 

I guess my big problem at the moment is to figure out what is a progression for me. It really depends on the reference point you take. At the beginning of the chemo, my whole breast was all red, hard, really inflamed, and about twice the normal size. So if I compare my current situation with that time, it is definitely much much better, the size is almost normal, skin is mostly normal, and most of the skin is soft too. But this has been like that after the end of my 2nd chemo, so I felt it hasn't improved since. Also, because my skin has softened, it is really easy to feel the hard lump underneath the surface now, and the size of the lump hasn't reduced either.  It usually got a bit soft just after my chemo, but then stay stable for a few days, and start to grow a bit at the end of the chemo again, which is quite frustrating, because all the chemo does is to bring it back to where it has started. 

I spoke with my nurse practitioner today about this probelm (couldn't get my onco for the appointment), and she thinks I should give Taxol another chance, since I've only have one round of Taxol. She last saw me after my first chemo, so her reference point is different from mine. And she was trying her best not to make me worried, for example, she said the size of the tumor sometimes doesn't change because the cancer can die from the center, but it doesn't explain why my lump will soften up a bit right after the chemo.  I guess I should still give Taxol another chance before really ask for a change, I'll just wait and see. 

lindaa

ling - Taxol is supposed work great so I would stick with it.  Your onc shouldn't even consider switching you without real evidence of progression, and it doesn't sound like you have that.  Only a scan or an obvious new lump would verify.

Bonnie - I am now on lxempra (every 3)/xeloda (14 day pills)/zometa.  I am trip neg so will have to look at cfu.  Also, on another thread, it says some clinics are now giving PARP off label, rather than waiting for a trial spot to open up.  I am trying to find out more.

lorieg

Rosesinbloom- I was nursing my daughter when I was diagnosed.  Although nursing my daughter did not cause my cancer (it was around and growing for at least 4-5 years) it may have stimulated it to become clinically evident. 

Ling- I didn't read every post in detail, but watch closely for signs of clinical improvement and if you do not feel it is getting better ask for a scan.  I did 4 rounds of DD A/C and 4 rounds of DD Taxol with weekly Herceptin and had virtually NO response in the breast.  My breast MRI looked as bad as it did at diagnosis after all that (although my nodes were better so chemo did something).  I was definitely not able to have surgery.  I then went to MDA and was put on Xeloda and Tykerb and had a much better clinical response and 4 months later had my surgery.  My MDA onc was shocked that my local onc had kept going with the Taxol despite the fact I was not improving and was in fact worsening clinically.  Be your own advocate.  The nice thing about having not had surgery prior to chemo is that you can see a clinical response.

 Good luck,

Lori

Ling29

Dear all,

I just had another pre-chemo appointment with my onco today. I am on my second round of DD Taxol, and in the last round, the same pattern remains. My lump became much smaller and softer in the first few days after chemo, and then stablize for a few more days, and started to grow a little again in the second week, exactly like what happened in my previous cycles. At the same time, I can see that overall, it is probably going a bit better, but this short term progression is really annoying.  

My onco was quiet puzzled by my response, but she has decided to let me carry on my DD Taxol, because I did respond well to it at the first few days. But on top of the Taxol, she is going to give me Xeloda too, since Xeoloda can be taken orally at daily basis, she hopes I will have something extra to combat the tumor even in the second half of my cycle.

 What worries me is that my onco wasn't too sure whether this is the best plan for me, at the same time, she wanted me to start my surgery as planned in just a month time. I am a bit scared, overwhelmed, and worried.   

ibcmets

Ling,

I hear it is sometimes hard to get a second opinion when you are in the middle of chemo, unless it's not working.  My onc pulled out the heavy big guns because I was stage IV with bone mets, ibc & had 3.5cm tumor.  He put me on taxotere, adriamyacin & cytoxin at the same time every 3 weeks.  He only allowed the mastectomy after I was stable for a year.  I just had a BMX/Recon 4 weeks ago. You can ask some questions on ibcsupport.org or find a doctor for a second opinion at UCSF.  If you want to know who I use, PM me.  I'm also in the east bay.

Terri

Ling29

Hi Terri,

Thank you for your advice. I did try to get second opinion from UCSF in the past before, but it took them more than a month to arrange an appointment for me, that's why I wasn't too sure I will have time to arrange things. Your treatment plan echos some of the other plans I've heard for IBC, it looks like it's important to stay on chemo until it definitely works, that's why it concerned me a little when my doctor told me she really wants me to go to the surgery quite soon.

 Nevertheless, I am glad to announce that I've managed to secure an appointment with Dr. Christofanilli in the IBC clinic in Fox Chase Center. It's a lot of travel for me but Dr. C is properly the most experience IBC expert in the world at the moment, I didn't expect to get an appointment from him when i called, so it was a pleasant surprise when they told me they can usually arrange an appointment even within 7-10 days (UCSF and Standford's waiting time is even longer than them). 

 So I'll fly to see Dr C on March 15th and at the moment my surgery date is set at March 22nd. Next month is going to be busy for me to get all the tests and appointments done while trying to work. And my big surgery day is approaching fast!!!!

Gingerbrew

Ling, I am so happy you have found your way to the best doctors and hospitals. I takes a certain courage to do that and you most certainly have that courage! 

I have followed your travel through  this since the first day you posted. 

Best wishes

GInger

txred9876

Thats great you are going to see Dr C! He is the best. I know him personally (although I was never treated directly by him).I think sometimes being busy is the best treatment. Since I went through my initial journey without insurance I was so intent on getting treatment that I really did not have time to worry about much else.

 Let us know what the progress is.... if you want to email me off site its txred9876 @ gmail.com

Tina

ibcmets

Ling-Glad you are seeing the best in the ibc field.  Let us know how everything works out for you.

Bonnie-- I got an initial copy of the pathology report.  I think more time was needed for testing of all the tissue.  The surgeon said he did not need to do a sentinal node biopsy because I was stage IV, but he did run some dye through to check nodes.  I had some microscopic malignant cancer cells that did not show up on scans because they were too small and they only took out a couple nodes.   Both surgeons asked if I was getting radiation and I told them that my onc never mentioned it. 

I'm doing reconstruction now and will have the exchange to implants around April 4th or 5th.  I will be continually checked by my onc as I get Femara and monthly Zometa.  They will soon be switching me to Xgeva shots instead of Zometa infusion.

Terri

ibcmets

Thanks Bonnie,

I'll ask my onc about the radiation.  Done with fills.  Will be doing exchange in early April.

Terri

lindaa

Hi Ling,  Just popping in to see how you are doing.  Hoping your visit with Dr C goes well. 

 Congrats on your surgery Terri. I'm still looking forward to getting there one day.  My boob needs to go.  Sending good thoughts your way and hoping radiation gets the rest of those little suckers.

Ling29

Hi all,

I haven't posted for a while but a lot of things have happened since my previous post, so I think should probably update.

I went to see Dr. C on March 15th, one week before my scheduled surgery. At that time, I had my pre-surgery MRI results and the MRI scan couldn't detect any obvious tumour. Nevertheless, i was still concerned because 1. nobody could explain what was the short-term progression I experienced during the chemo; 2. even though nothing could be detected on the MRI, my nipple on the left breast was still flat from time to time and I could still feel it was denser than the right breast; 3. I had only 3 rounds of DD AC before switching to Taxol, so my chemo was about 1 round shorter than originally planned, I am not sure whether I need any more chemo. 

I saw Dr. C on the 15th just days after my last round of Taxol, the flight from CA to Philly took more than 8 hours and that was a tough trip for me. Dr. C checked my breast and told me based on the look of it, he thinks I am operable, but he just wanted to confirm it with a PET scan first (I have never had PET scan before, only CT). Because MRI only detect mass, but PET scan can detect the cell activity.

A few days after I was told that Dr. C thinks I can go for the surgery as planned, I didn't see the PET scan report and only received it on my surgery day. The PET scan actually couldn't detect any thing at all, only slightly higher SUV (1.6) on my left breast but still lower than the threshold for cancer.

I actually didn't see the PET report until after surgery on March 22, but the surgery went ahead as planned, I had a left modified radical mastectomy with all axillary node dissection. The surgeon removed 31 lymph nodes and I received the surgical pathology report yesterday. All nodes are clear and I only have 1.5mm tumour left, although still high grade (Grade 3). They found no lymph-Vascular Invasion and Dermal Lymph-Vascular Invasion.

Overall I am really happy with the results, the only confusing thing for me now is my receptor status. My biopsy pre-chemo told me I am ER- PR+ and HER Equivocal, but the post-surgery report stated I am ER- PR- and HER Equivocal. How can my receptor status changed so much? I didn't have a chance to ask my doctors about it yet but I will try to get an answer later. Even if my local doctors aren't sure I still have a chance to ask Dr. C, because i am scheduled to see him again on April 12th, to discuss post-surgery treatment plan. 

Ling