End of treatment or so I thought

[cherylynnie]

On Tuesday I had my last herceptin treatment. My husband surprised me and walked into the treatment room bearing gifts. The balloon on the bag he was carrying said "way to go". I was surprised to see him, I had just been talking smack about him, and there he was.

But the celebration was bitter sweet because I had an excisional biopsy planned for Thursday morning. I found a lump about three weeks ago very near where the original tumor was. I had a mastectomy with reconstruction originally. I havent really been too concerned about that side but there it was. The surgeon was optimistic and didn't think it was anything but I wanted to have the excisional biopsy as opposed to a core needle biopsy.

Well the results came in on Friday and it is cancer, the whole report wasn't back yet but I will find out more next week.

I just don't understand --- I went through all my treatment, a year of herceptin, tamoxifn and now more cancer. How come the herceptin and tamoxifin didn't get this? This probably sounds like a stupid question, and I probably know the answer but I just have to have it explained to me so it will sink down into my brain.

Thanks!

[Lani]

Herceptin doesn't work for everybody (and some tumors may perhaps become "resistant" to it--that is a pattern seen in metastatic disease anyway)

Similarly tamoxifen doesn't work for everyone, and, when given without herceptin, rarely works for her2+s.

They believe the two are synergistic, but that is based on experiments in petri dishes or in transplanted cell lines placed into mice.

Now is the time to be forward-looking.

Is the new tumor of the same variety as the old tumor ie, is it a recurrence or a new cancer.

From your description, it sounds like, having had a mastectomy you didn't have radiation therapy.

You didn't describe what chemo you had.

In some ways having a tumor large enough to get neoadjuvant therapy is an advantage--psychologically at least. It allows treatments to be evaluated as they are ongoing, rather than finding out at the end of treatments (or thereafter) that it didn't have the desired effect.

The good news is that if this is a recurrence there is now a new canon in the armory--tykerb. If your recurrence is still ER+ there are still AIs (if you are postmenopausal or can be made that way with injections or removal of ovaries) or faslodex (which Dr. Slamon has said at meeting is in his opinion the best antihormonal for her2 positives). Herceptin does not work if the tumor lacked PTEN--Tykerb works even if it did.

If this is a recurrence, you are definitely a candidate for tykerb. You might want to look into what clinical trials you qualify for or just get opinions as to what combination might be best now that your oncologist is free to prescribe it off label ie, in all cases where it is not combined with capecitabine. If it is a recurrence, there are ongoing trials for quite a few new antiher family monoclonal antibodies and tyrosine kinase inhibitors as well as anti-heatshock protein, mTOR inhibitors, etc. as well as the vast majority of vaccine trials.

If this isn't a recurrence but a new cancer, you might want to see if you can take advantage of all the testing of the tumor that is possible to characterize it and determine how best to keep "both your tumors" from coming back.

No matter what, sounds like you will need some second opinions.

The timing was terrible--but would you rather have discovered it later, when it had a greater chance to spread ?

Best of luck!

[Becky]

Don't despair. A few rads may be all you need. If the cancer is the same (and it probably is the a recurrence of the same one), it may have primarily come back in the scar tissue. This is the common way for a local recurrence. Scar tissue has very little, if any, circulation. Therefore, chemo, herceptin and tamoxifen have very little effect on scar tissue. If there was a cell left behind there, the cancer could (and did) come back.


One thing Lani mentioned, which is right on, is that Tamoxifen without Herceptin does not work well with Her2's. Especially those like you (and me) who are only ER+ but PR-. You should ask your onc for Lupron or Zoladex shots so you can take Arimidex or Femara instead (unless he decides to keep you on Herceptin a bit longer). The Herceptin and chemo probably did work in your body - but really nothing but rads works on the scar if something is left behind.

You will just have to work alittle harder for about 8 weeks or so and then the hubby will have to get you an even bigger and better celebration gift!!!

This will all work out fine - it will just take alittle bit more. Try to smile. We are all here rooting for you

[cherylynnie]

Lani and Becky,
Thanks!

Lani,
My first tumor was 2.3 cm, 1cm, and .6cm. One appeared on the mammo, the second on the MRi and third they found when they removed my breast. I had an immediate tram flap reconstruction. So I am thinking that from the core needle biopsy some cells got loose or from the small amount of breast tissue that was left with the skin saving mastectomy. This new tumor was not deep at all but very close to the surface of the skin. I am hoping that there is nothing else, but I am sure they will send me for all kinds of tests now. I will get more results on this new tumor next week. The pathologist was comparing it to the original cancer. So hopefully we will get all the info we can on it.

Becky,
I am hoping you are right and that the seven weeks of radiation will do. Since my nodes were negative I didn't have any radiation. When my husband walked in with the balloon and gift bag attached I asked if there were diamonds in the bag. There was an angel in the bag and chocolates. Maybe I will get diamonds later. HAHAHA

Lani,
I am going to print this out so I can understand better what you have told me. I really appreciate it.

You two take care!

Cheryl

[Erin]

Wow, I am so sorry for your news. I know that no matter how positive everyone is regarding a local recurrance like this, the news must still have been so hard to take. I am already looking forward to the "end" of treatment... which won't come until 2/13/08! I know that symbolic date must have meant alot to you too. Best of luck with your next treatment decisions. Hang in there :-)

[cherylynnie]

Erin.

Thanks! You are right I was so looking forward to ending treatment. I got my port out about three weeks ago before my last treatment, because my left arm was slightly swollen and reddish purple. And my neck hurt on that side. I had two doppler studies since the first of Feb. and there was no sign of a blood clot. So I got the port out and I was so happy. It has only helped the swelling and redness alittle. I have to go to a rehabilitation doctor to see if it has something to do with my shoulder, which has been popping for a while now. Sorry I got side tracked. But yes, it should have been a time to celebrate. My port was gone and I was having my last herceptin treatment. It wasn't even that bad having the treatment without the use of a port. I still don't like getting stuck but am used to it I guess.

I hope Becky is right and rads are all I need but I think he will want to maybe keep me on herceptin or maybe add tykerb. We will see.

Thanks again!
Cheryl

[atdec05]

Hi Cheryl,

Sorry to hear about your recurrence. I have a similar story - lesion found near mastectomy scar while finishing my last month of herceptin. Before my final pathology report, my onc. recommended radiation only. But by the time I had my wide excision I had another spot that was punch biopsied. Pathology reported it as recurrent IDC carcinoma in dermal lymphatic. That meant it was in the skin, yet could have travelled in the lymph system. My second opinion has recommended TCH then radiation...basically going thru chemo all over. I'm er/pr, so chemo is my only option.

I agree a 2nd opinion would be good. Let us know how it goes.

- Anna