UPDATE-Axillary lymph gland mets
 

Hi from England.Visited the site a number of times and found it really helpful. Wonder if anyone can help me with this query.I was diagnosed in Feb 2008 with ibc with 13 axillary nodes Had 4 doses of AC followed by mastectomy and 15 rads. Started on herceptin in August. A couple of weeks ago found an enlarged lymph gland in other axilla which was biopsied and contained malignant cells. Mammogram and ultrasound of breast seemed clear. Onc has stopped herceptin and I will be having axillary nodes removed and 15 more rads.Onc then said we would have to wait and see where it turned up next! Wont consider Tykerb even though I could fund this privately.Anyone had similar experience or info on this. Thanks Ellie

Hi Ellie! Why not add chemo to more herceptin? ma

Ellie,

I do not see where you had any Taxol. I'd shoot for more Herceptin and Taxol. I am puzzled why your onc would not aggressively treat you with more chemo. Puzzling...

Axillary lymph node mets
 

Thanks for your replies.My onc flatly refuses to continue with herceptin as he says it hasn't worked and there is a cost consideration. I tried to persuade him to try an alternative or possibly a combination including taxol as I havent had this before. In fact I would have been pleased if he had suggested anything at all! His view is because I have no signs anywhere else and my scans are clear I should wait and see where it turns up next.This makes me feel like it's hopeless.My breast surgeon is not happy and thinks I should seek a second opinion so I am trying to go to see Prof Smith who was the onc mainly responsible for getting herceptin used in Britain. It seems our treatments and our outcomes here in the UK still are some way behind yours in the states.Am even thinking of going to MD Anderson but think the cost may be too great.

I surely do support your pursuing a 2nd opinion. Keep digging for more information. You have our support! ma

Axillary lymph gland mets
 

Thanks for support Mary Anne. I will continue with referral.I was really surprised with the amount of treatment you had received which thank the Lord is working for you. Encouraged me not to throw the towel in just yet!

Hi Ellie,

Please do get that second opinion. I am hopeful that you will be given the tx that you need. Hang in there.

Lexi

My oncologist brushed off my concern about new mets in my armpit/chest area also. Don't understand the way he thinks. I saw him last week - one month before my scheduled appointment. Then they just moved my upcoming appointment down another month to April.

I have contacted my surgeon who happened to be out this week. Her nurse will talk to her next Monday and if she does not see me, I will try to get another oncologist for second opinion. [Did get the appointment scheduled with the surgeon on 3/10][Got the surgery scheduled on April 2nd - wondered what my medical oncologist has to say when it's chemo time for me again...]

Axillary lymph node mets
 

Hi again can't tell you how much better it feels to know there are other people who understand and live with the same fears (and hopes) each day. Due to see breast surgeon tomorrow for post surgery follow up and hopefully second op from onc in next couple of weeks

Ellie, Please do get a second opinion. Research has shown strong evidence in continuing Herceptin despite a progression. I also wondered why not Taxol w H combo?
Good Luck.

Ellie,

I am glad your surgeon is behind you. Let us know what your new onc says. I have spoken of your case to a number of folks over here across the pond and they are universally appalled! You are far from hopeless! I'd like to punch your onc. in the nose, the heartless, vile man who doesn't belong in a profession where you require a soul to be effective!

It is so sad I know my treatment got delayed and scared the daylights out of me. You have to be your own advocate I have learned that early on. Good luck and God Bless. PS I am done with AC and start Taxol in two weeks I will let you know how it goes. Herceptin will start two week later because I am allergic to many drugs they want to ease me in slowly. That too is scary.

Axillary lymph glad mets
 

I would either follow my doc around the office with various suggestions or get a second opinion. I am can be a pest when I need to be. I have done both of those things.

Axillary lymph node mets
 

Hi Everyone, thanks for all your support. Just a quick update. Saw surgeon today. Onc on hols but surgeon continued to push my case with his junior.What has emerged is that it seems that they have had very little (if any) experience of recurrence just in the opposite axilla.I asked if it was possible that I had another primary in my remaining breast and was told that though the mammogram and ultrasound hadnt shown anything obvious they couldn't exclude it! So will be trying to get my second opinion arranged as soon as possible to hopefully get some answers.

Axillary lymph glad mets
 

Good for you !! Keep trying to get some answers and some help.

Ellie,

Please keep us posted. Thanks.

Axillary lymph node mets
 

Certainly will. I'm now going to also read the research on continuing with herceptin plus an additional drug so I will be armed with the info for my second opinion.I suspect that his sole reason for stopping it was cost based as there is considerable rationing going on in the NHS.You are probably aware that herceptin has only been nationally available here for early stage breast cancer since Nov 2006. We probably wouldn't have it yet but for some brave women challenging the Government in the High Court.

Hi Ellie,
I'm In England too.

After running out of options my onc sent me to Dr Steve Johnston at the London Marsden for a second opinion. He has a special interest in IBC and is very pro herceptin.

I'd ask for a second opinion with him,
Good Luck,
Jackie

Ax lymph node mets
 

Thanks for that info Jackie.I had been struggling to decide who to see and had opted for Prof Smith at the Marsden because of his championing of herceptin here.Grateful for info will now make more enquiries. Ellie

Ellie,

I am still quite steamed at your onc, but having said that I am also relieved to hear you are able to seek another opinion at Marsden (whatever that is). I hope London isn't too great a journey for you. Best wishes and prayers. Please let us know what transpires with your surgeon regarding the unaffected breast. I did think it odd to read that it was your opposite axilla. I thought perhaps you had mis-typed. Let's hope your other breast is not diseased. Never a dull moment with B.C., huh? Sending prayers across the seas.