Thanks for your prayers and support Laurel. The Royal Marsden hospital is one of the main oncology hospitals in England so hopefully they will be able to at least look at my case with fresh eyes!I was talking to a spec breast cancer nurse the other day who told me that in 13 years in the job she had never seen a recurrence just in the opposite side axilla.I alternate between feeling very angry and then equally despairing but am really encouraged by the support I have received from everyone on this site and the wonderful stories of courage fighting this horrible disease

Ibc
 

Hi Ellie,
Chiming in to welcome you to our site. I am so happy that you are seeking a second opinion, especially with IBC. There isn't a lot of time to wait between treatments and our kind of cancer can spread like wild fire. I am not in any way suggesting that you are not probably doing just fine, but I do worry that so many Oncs out there do not understand IBC and it is so often misdiagnosed. I feel a lot better that you are being pro-active and going for that second opinion. I'm praying that there is an Onc who specializes in this type, or at least has treated IBC and knows the protocols. Much love and support to you. Please let us know how you're doing. I'm sending you cyber hugs, prayers and much, much love, Vickie

Thanks Vickie for the warm welcome.Since joining this site the support has been brilliant. When my onc told me the ibc had come back and I had between 1 and 4 years if lucky I felt like giving up there and then! But I continue to pray for a cure for us all and when I read stories on the board of women who have outlived their prognosis it gives me so much hope that better treatments are becoming available all the time.love Ellie

Ellie,

Click on the Blue color heading on the main board, you will see all the previous threads on Inflammatory Breast Cancer. There is one entitled "Need hopeful stories of survivors of Inflammatory Breast Cancer?". I think you will get encouraged by the replies.

Another way to do this is use the Search button on the gold bar above the board. You will be able to find a lot of uplifting survivor stories by typing in the key words of your inquiry.

Update-axillary lymph node mets
 

Hi everyone, after a struggle finally got my second opinion yesterday! New onc was brilliant.He felt waiting for BC to come back was NOT an option and felt my herceptin should not have been stopped.His plan is to check the receptor status of the removed lymph glands to try to ascertain if it could be a new primary, however he wants me to have 4 cycles of a taxane plus herceptin , then herceptin alone for an indefinite period. His view was that as I am now NED we should try an aggressive approach to try to keep it in remission.He said that my presentation was unusual and therefore difficult to estimate how effective treatment might be as no research available.Thanks to all for good advice.Trying to keep positive though feel very frightened about having a taxane.Love Ellie

HI,
When my lymph glands showed positive (and I had skin mets) the only thing that worked was Tykerb (for a while). I was about to have them removed (and the rest) when I found a new onc who said the treatment needed changing, that removing them was like 'shooting yourself in the foot'. (He is an eccentric Brit). He uses them as markers so he can see if the treatment is working.

My lymph recurrence was on the opposite side! I was treated originally at the Hammersmith. There's always something new—that's not so new.

Ellie anyway you could get an MRI of the breast
 

you may have an occult tumor there that is not seen with either Mammography or Ultrasound. It may be her2-, so the herceptin could be working on the first tumor...Oops, now I read further and see your second opinion is thinking this way as well.

Hi folks, thanks for your posts.Went armed with my second opinion back to my regional centre yesterday and saw another onc.The receptor status of the axillary nodes is not yet back but the onc said that if there was any change in status she would do an MRI-progress or so I thought! She then spent the next half hour telling me the disadvantages of having taxotere including the information that two of her patients had died of neutropenia!!Having had this once after AC felt my blood pressure rising++.She also said that there was no research about whether it was effective if only the lymph glands were affected and now I have had them removed I am technically NED again. The next thorny issue was restarting herceptin. She felt that as I had 'failed' on it that it probably wasn't worth starting again as it probably wouldn't work. I then said I understood that there was some evidence of synergy between taxanes and herceptin and she shrugged her shoulders. I have another appt in 2 weeks to review the node status.
I would be very grateful for any thoughts or comments as feeling very down and confused now.Left again feeling there was no point going on with the fight. Sorry to be like this but really struggling to stay positive. many thanks love Ellie
ps Don't know what I would do without you all x

Dear Ellie,

It would make a lot of sense to get a second opinion from Prof. Smith. Over the past years I've found that we really need to be our own advocates. Have you considered having an MRI? Or even a mastectomy on the opposite side? Bringing the tumor load down might helpt. It's also possible that your body - perhaps with help from Herceptin - cleared out the tumor in your opposite breast. Who knows? Clearly they need to dig a bit deeper and there's no reason to give up hope just yet. You need a fighter and a detective for a doc, not a quitter and a sitting-on-his-behind-waiting-for-the-other-shoe-to drop poor excuse for a doctor.

Just my 2 cents

Jacqueline (from the Netherlands)

article on how 3T MRI detects tumors not seen on MRI, mammo
 

Hi Ellie, I am so sorry you are going through all this. I quite agree with Jacqueline,You need to be your own advocate to receive optimal care. it sucks, but it is true.I know it's hard enough to deal with the dx, but fighting for treatment and getting conflicting rec. of Tx is extremely difficult. Alot of us have been there.
Please do not give up on being assertive with your care. I think it is wise to get the pathology of the nodes removed, and then treat aggressively. Please do not be afraid of the Taxanes, Neutropenia can be managed. We will help you.
Techinically your one doc is right ;there is no specific research on H&T tx. for pos nodes in " unaffected breast". However, you are quite correct that H&T do work synergistically overall for HER pos disease. We all need to remember that Herceptin is relatively new and there are still limited amount of studies to refer to.

It angers me that I think the conflict with the docs are their lack of knowledge in your particular scenario , and also the cost considerations.
I pray you are able to receive the you tx you deserve and works best for you.
God Bless.

Hi Ellie,
I, too, agree with Jaqueline. If we want to look into statistics regarding Neutropenia you would probably find that a heck of a lot of people have had that (myself, twice) and that is no reason not to try a Taxane. There are drugs like Neupogen that you can have to prevent that and not everyone gets Neutropenia anyway. I hope you follow Jaqueline's advice. we love you and support you and are rooting for you always.
Love, Vickie

Thanks everyone for your advice and support,words can't express what a difference it makes.
I feel a lot brighter and more positive tonight, sometimes I think the language that oncs use like 'failed' and 'not cost effective' are demoralising and add an extra burden to an already difficult journey.
I am back in two weeks when hopefully my node status will be known. I then intend to push for an MRI before starting taxotere. I did manage after a hard struggle to get the onc to agree to give me herceptin as well even though she told me it was a waste of money as I had already 'failed' on it. Thanks to the good advice from my sisters here I was well able to put forward the arguments about synergy!
Ellie

Ellie, I don't have IBC, but I have had Taxol and Taxotere and herceptin and more! You can do the taxanes, girl! Get determined to fight for YOU! I think when they don't know what to do next, it's them getting discouraged and passing it on to us! Just say a HUGE, "No Thank You" and continue to know that no one on the planet deserves better care or attention. You're important alright!!!! Very important! When you get discouraged think about all of us (tons of us) standing behind you holding you up and cheering outrageously! You can do this! ma