Looking for answers about length and course of treatment for IBC

PennStateMac

Hi everyone,

I was wondering if people could tell me what your course of treatment was (or is) for your IBC.  My mom was diagnosed in Feb 2008 w/stage 4 (skin involvement and lymphnodes in neck and under both arms affected).  She began round of chemotherapy in March 2008 of Taxol/Gemzer.  She will now be beginning her 7th round of treatment on Tuesday-this will be 18 weeks of treament now-over 4 months.  The cancer is responding very well and is shrinking and her last scans showed significant improvement in the size of the nodes.  However, the dr still has no sense of time of when the chemo will end, if surgery is going to happen, ect...  My mom is starting to become depressed since there doesn't seem to be any light at the end of the tunnel.  I would greatly appreciate if anyone can tell us how long you were in chemo, if you had surgery or not, did you have radiation or more chemo after surgery and how long it was until you showed up as NED.  We were never expecting this to be a short journey but we need a little more info than what we have been getting.  Thanks for any help and informantion you can give me.

Caseysmom

mcoyne-whalen:

 I was dx with IBC in July 2004: had 20 weeks of chemo prior to surgery.  After surgery I had another 11 weeks of chemo followed by 7 weeks of radiation.  2 weeks after treatment I had my tumor markers done and a bone scan.  When I saw my doctor 2 weeks later for the results he told me I had no evidence of disease.  In August I will be 3 years out from treatment.

Laura

FloridaLady

My first diagnoses of IBC, I was treated for 4 months with Carbo & Gemzar every two weeks and then every other week with Avastin and CG. (I than found bc in other breast and did two more sets of chemo.) I'm two years out from my orginial IBC and just started all over again.  We decide to use the same chemo combo.

The key to your journey with this, is how involved your bc is at diagnoses.  If you have lymph involvement away from breast area your treatment will be a lot more aggressive.  I also have lymph involvement in the neck this area is not always easy to treat.  Also they very, very rarely will do surgery anywhere near the neck.  They call this high end real estate.  My thought is they, may want to treat her aggressively at first and then have surgery...I would say she they will do rads and possible back to chemo if neck has not responded.  I sorry to say this, but I know from experience the neck is hard to treat.

Is there any way you can get Avastin for her?  This drug has improven excellent with IBC. This was approved last year.  (I got it the first time 3 years ago, outside of a trial)

If you feel the need for more information from a doctor.  I know she will not be happy...but get a 2nd opinion may ease everyone's mind.

May I ask how old your mother is?  This also will somewhat control her treatment options.

Wishing you and her, hope and peace.

flalady

Anonymous

I think the fact that your mother is already stage 4 at diagnosis is the reason they have no timeframe to give you.  When the cancer has already spread to the bones and other organs, treatment is usually ongoing and is considered palliative in nature.  The objective is to keep the cancer 'stable'.   I wish your mother the best.

FloridaLady

Actually all IBC is consider Stage IV, the skin is a organ, if you want to be technically.  But if your IBC can be removed with surgery, again the skin and nodes involved.  You can have a excellent prognoses.  The problem is the nodes in the neck can not be removed and most be treated with rads and chemo.  Keep up the hope, she has not yet spead to bone or major organ.  This is the goal of her treatment.  I have had 56 nodes positive and still have not spread to bone/organ after three years. 

 Flalady

Anonymous

No, IBC is initially staged at 3B if it has not spread beyond the breast and lymph node area.  Stage 4 is when IBC has spread to the bones or organs outside the breast.

Anonymous

BCO Staging

Stages of Breast Cancer

Stage 0

This stage is used to describe non-invasive breast cancer. There is no evidence of cancer cells breaking out of the part of the breast in which it started, or of getting through to or invading neighboring normal tissue. LCIS and DCIS are examples of stage 0.

Stage I

This stage describes invasive breast cancer (cancer cells are breaking through to or invading neighboring normal tissue) in which:

• The tumor measures up to 2 centimeters, AND
• No lymph nodes are involved.

Stage II This stage describes invasive breast cancer in which:The tumor measures at least 2 centimeters, but not more than 5 centimeters, OR Cancer has spread to the lymph nodes under the arm on the same side as the breast cancer. Affected lymph nodes have not yet stuck to one another or to the surrounding tissues, a sign that the cancer has not yet advanced to stage III. (The tumor in the breast can be any size.)Stage III Stage III is divided into subcategories known as IIIA and IIIB.Stage IIIA Stage IIIA describes invasive breast cancer in which:The tumor measures larger than 5 centimeters, OR There is significant involvement of lymph nodes. The nodes clump together or stick to one another or surrounding tissue.Stage IIIB This stage describes invasive breast cancer in which a tumor of any size has spread to the breast skin, chest wall, or internal mammary lymph nodes (located beneath the breast right under the ribs, inside the middle of the chest).Stage IIIB includes inflammatory breast cancer, a very uncommon but very serious, aggressive type of breast cancer. The most distinguishing feature of inflammatory breast cancer is redness involving part or all of the breast. The redness feels warm. You may see puffiness of the breast's skin that looks like the peel of a navel orange ("peau d'orange"), or even ridges, welts, or hives. And part or all of the breast may be enlarged and hard. A lump is present only half of the time. Inflammatory breast cancer is sometimes misdiagnosed as a simple infection.Stage IV This stage includes invasive breast cancer in which:A tumor has spread beyond the breast, underarm, and internal mammary lymph nodes, AND A tumor may have spread to the supraclavicular lymph nodes (nodes located at the base of the neck, above the collarbone), lungs, liver, bone, or brain."Metastatic at presentation" means that the breast cancer has spread beyond the breast and nearby lymph nodes, even though this is the first diagnosis of breast cancer. The reason for this is that the primary breast cancer was not found when it was only inside the breast. Metastatic cancer is considered stage IV.

Anonymous

Sorry for the weird font size and bolding.  This happened when I copied/pasted from the BCO page on staging.

Anonymous

This is also from the BCO website on their Inflammatory bc page:

Inflammatory breast cancer is usually categorized as stage IIIB breast cancer because of the possible involvement of the skin, chest wall, or lymph nodes along the breast bone inside the chest wall. If the cancer has spread to other organs, such as the bones, lungs, liver, brain, or to the lymph nodes in the neck, it is categorized as stage IV.

http://www.breastcancer.org/symptoms/inflammatory_bc.jsp

FloridaLady

Sorry,, I have been told by three top cancer center's IBC is stage IV if it hit over a certain amount of lymph involvement outside of breast area.

Flalady

Anonymous

Yes, that's right....as you said 'outside of breast area'.  Otherwise, the IBC is stage 3B.  The breast skin area is considered part of the breast.  That's why its called breast cancer instead of melanoma, basal, squamous or some other type of skin cancer.

FloridaLady

I have been told it is only IIIb if it does not spread.  I was a IIIb until it moved to lymph of neck and a recurrence in the skin.  Now it is stage IV.  And you can have bc anywhere in the body and it still "breast cancer".  Lung met and liver mets are still breast cancer.  The key I think is that if your cancer can be removed with surgery it IIIb, after it moves to areas for example the neck where know surgery can not be preformed or like me with double mast. and a recurrence on chest wall now you are stage IV relying on chemo only treatment.  I have been told by three top center including MD Anderson that they can no longer control my disease.  That makes me Stage IV!

flalady

Anonymous

MDAnderson Staging webpage

Their information is inline with BCO with the exception of the new 3C category.  Stage 3B at MDAnderson includes the skin of the breast.  It is not considered a separate organ for staging.

FloridaLady

You want to call my doctor's?  I think three clinic would know.

Flalady

Anonymous

All cancer spreads.  Staging is what tells if and where it has spread.  Yes, you are stage 4 now because your IBC has spread outside of the breast area to the lymph nodes in your neck.  This is in agreement with the information I have posted here.  I think we are saying the same thing just in different ways.  IBC is stage 3B as long as it is contained to the breast and axillary/mammory lymph node area.  Once is spreads past that to other organs, bones, lymph nodes above the collarbone then it is certainly stage 4. 

But you stated initially that all IBC is considered stage 4 because it is in the skin of the breast and that is just not the case.

FloridaLady wrote:

Actually all IBC is consider Stage IV, the skin is a organ, if you want to be technically.

Anonymous

I don't need to call your doctors.  I have all the information I need.  I am confident in the information I currently have.

And yes, IBC is cancer in the skin of the breast.  The breast skin is not considered a separate organ as you ORIGINALLY stated.  I completely agree that this is definitely breast cancer.

PennStateMac

Thank you for getting back to me with your info. 

 My mom is 62-will be 63 in August.  She has no mets to bones, brain, lungs, liver or any other organs.  However, she was classifed by the breast surgeon and the 2nd opinion oncologist at stage IV due to the "rash" on her breast and that lymphnodes abover her collar bone were affected.  The original oncologist classifed her at stage IIIb and said he felt that due to the fact that no other organs like bones, etc..were affected.  It just goes to show you how different drs stage differently-almost like they are "out-staging" each other! :-)

 My mom began her treatment at a local hosptial (we live in the suburbs of Philly).  We went to the University of Penn in the city to their Rena Rowan Breast Cancer center and got a second opinion from the head of oncology there who has treated IBC more often than the local hospital.  He said that he would be doing the same exact course of treatment she is currently undergoing and that for the moment he said that for the conveince factor it would be fine if she stayed at the local hospital.  But when the time comes for a change in treatment plan we are to consult with him and if he differs in the treatment then it would be her choice where to go.  Every dr we have met with has given us a good pronosis.  They say that they can treat this for years with different chemos, targeted therapies and possibly hormone treatments (Penn found that she was "slightly" ER+).  We have been told by the drs that this is a chronic illness and will be treated as such so she will be on something for the rest of her life.  But it can be frustrasting when the dr still doesn't have many answers as to when surgery may be possible.  But now that I know about the nodes in the neck it makes more sense-thanks FlaLady for that info.  It just seems that this cnacer is alot of wait and see.  This is hard for my mom who was a VERY acitive person and was never really sick before. 

 And I want to thank you too for telling me how many years out you have been since diagnosis with IBC.  You really don't know how much hope that gives me. 

Anonymous

No, they are in agreement.  The lymph nodes above the collarbone are considered to be outside the intital breast area.  This is why she is classified as stage 4 and is in agreement with all the information you will find online.

DianeE

Thought I would jump in here with my data...I have IBC and was told I was stage IIIb, possibly stage IIIc as the internal mammary nodes showed up on the pet as borderline and they did not want to biopsy those nodes.  Should any progression happen to superclav or other organs, was told that would be stage IV.  Staging can be tricky, but IBC is not an automatic stage IV from the start.  Thank goodness, that would be too much.

Diane

Anonymous

Thanks DianeE.    I am also stage 3B.  None of my doctors have ever stated that all IBC is stage 4.  And I have great doctors.  Plus, even the MD Anderson website says that IBC is stage 3B unless it has spread to the superclav or other organs.  I consider MD Anderson the leading authority on IBC. 

shrink

I got the same explanation from my oncologist.  I'm considered Stage IIIc and not Stage IV (I asked) since there was no evidence of disease anywhere else but the breast area.  I'm still Stage III after my latest scans.  Hope it stays that way.

dorfar

Hi All,

I just wanted to say that I was also diagnosed at a stage 3b. I have some lymph nodes involved. I was diagnosed through a lump I found in my underarm. I was told it was 3B becuase it has not spread beyond the breast area.

Mcyone-whalen: While my staging is different thank your moms I'm under going ACT chemo. Four of the AC and 4 of taxol. I was told I would have a mastectomy followed by possibly more chemo and then radiation.  I guess the additional chemo will depend on my margins after surgery. Please tell your mom to keep her chin up. Chemo can really suck and sometimes the thought of more chemo can be overwhelming when you feel so crappy. I try to think of it as a labor, and at the end of the labor I will give birth to new life. A new NED life.

PennStateMac

Hey again,

You are right dorfar, chemo does suck.  We met with the dr today and he postponed the treatment of Taxol/Gemzar my mom was supposed to have today.  She has some swelling in her abdomen (two nodes there had spots when she had the 1st scan done in Feb) and the rash on her breast looks like it is spreading.  So she will have more scans done Fri.  He said that it could mean that this comb of chemo is no longer working and he will have to switch to another chemo or combination of chemos-yeah.  I see many of you have had this Avastin.  Is that IV chemo or oral/pill form.  He didn't mention any names of chemos but said that he was considering one she could take in a pill.  That would be nice since my mom feels like a pincushion at this point.

Anonymous

I think the pill one is Xeloda.  I don't know what form they give Avastin but I think its IV form.

Anonymous

Has your mother considered getting a port since her chemo will be long term?  It really does make life easier for most of us.  I still have my port 4 years out. 

mrs_X_Sunneedazee

I did 5 months of chemo (taxol, herceptin + Zometa for bone mets)

My last big3 treatment was October 16th, I had a mastectomy and oophorectomy same day Oct 25th.  

I was back in for Herceptin and Zometa Nov. 6th, only 3 weeks from the last one.  

I had 30 rads from mid dec-mid Jan08.  

I have continued with every 3 week tx of Herceptin and Zometa.

My last scan showed progression and new growth, so I will be going back on Taxol weekly.  I am dragging my heels and delaying the start of that until my kids go back to school.  I refuse to be sick like that this summer again.  

suzyq18

hi i was diagnoed with ibc last aug started 18 weeks of fec chemo on 11th sept then had a masectomy feb 6th  then started 3 weeks or rads  on 17th april have been on tamoxifen from feb, had scan on 12th june and all is fine also cancer marker blood tests were clear,so i am now in remmission, hope you will be soon sue

shrink

I had 5 months of chemo (4 Adriamycin and 4 Taxol) followed by bi-lat surgery three weeks later.  I had radiation for 26 treatments and am now on Arimidex.  Last scan was in May 08 and there is no sign of mets so far.  I'm keeping my fingers crossed for all of us.

ibcspouse

My wife is IBC stage IV.  It is locally advanced with both breast, axilary nodes and superclav.  No distant mets.  Before 2002 this would have been stage IIIb but now considered stage IV.  This was reclasified due to thought poor pronosis once superclav get involved.  Now all recent studies show pronosis with superclav and local advance same as stage IIIb.

Wife, Cam has same situation as your mom.. breast tumor responding to TAC plus Avastin but rash spreading.  Switched to Avastin plus Gemzar and Carpo, this has knock out rash in two treatments.  Had 3rd treatment of this yesterday and will have pet scan in 3 weeks.  Dr not totally happy with overall and her have heart scan today.  But good news in the ctc (circulating tumor cells) is at 0,  They need to be less than 5, hers was over 100 when dx. 

good luck  

Maryiz

Someone, please help me understand.  I don't really understand when people say mets to supraclavicular and mammary, but no distant mets.  I thought distant mets were lung, liver, bone and brain.  In terms of prognosis, are they the same?  Can you halt progress once it has spread to the neck?  I really don't understand the staging when one doctor says stage IIIB and another says IV.  Could someone respond who has been researching this?  Thanks, Mary

PennStateMac

Not good news this week.  The dr admitted my mom on Tuesday due to severe abdominal pain and headaches.  They wanted to run tests to see what was going on.  The MRI shows cancer cells in the lining of her brain.  They are putting a port directly into her brain to give chemo and she wil have radiation at the same time.  They say they caught this early and they can contain it, but they aren't very positive on her prognosis.  We were being told years and not we were told they would be happy with one year.  I am so sad and scared, I can't imagine how hard this is for my mom.  Now I can only hope for a miracle.