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

[cherylynnie]

Anna,

So sorry to hear it. I am sure like me you just wanted to get to the end of treatment. Are you almost done with the chemo regiment? Did you go to a new oncologist? How was the radiation?

Before my excision biopsy the surgeon asked me if I needed any pain meds and I said no, but as she was walking out I told her she could get me some ativan. And she came back and said 1mg, I said no 2mg so I can cut them in half. And she did. So at least I am able to sleep through the night. And I am either sleeping through my night sweats, which last for 30 minutes a piece or I am not having them due to the ativan.

Good luck to you I hope treatment will be over for you soon. And thank you for responding.
Cheryl

[MJo]

I'm sorry about your recurrence. I trust it can be reduced to ashes by radiation. I hope your hubby buys you a diamond or diamonds for the end of radiation.

I understand how at the end of treatment you were looking for a psychological break -- a transition into being a survivor. Because my CAT scan found a tiny speck in my lungs, I have to have CATs every three months for the next two years. It's not the freedom I was hoping for. I also appreciate the benefits of anti anxiety meds. I still use Xanax occasionally, expecially when I need a good night's sleep.

[atdec05]

Hi Cheryl,

I haven't started treatment for my recurrence. Just had my wide excision on 3/15, got a 2nd opinion on 3/22, will see my oncologist this Wed., and get a 3rd opinion on 4/2. It will be a relief when I can finally decide what to do and start. I hope your further treatment is confined to radiation.

I think I need to do chemo as well, especially since I didn't do Taxol as part of my initial chemo.

take care,
Anna

[Lani]

your post that you were going to print out my comments caused me to review what I had written and I had put gemcitabine (gemzar) instead of capecitabine (xeloda)--good luck on your second opinion!

[Jean]

Dear Cherly....


I am sorry to hear that your last day of herceptin was darkened.
But I think as Becky wrote that all will turn around and you will
be back with your face towards the sun! Don't dispair - please
let us know how all goes - thinking of you and sending you
lots and lots of positive energy!
PS I will finish hercetpin in two more treatments also!

Best of luck,
Jean

[Jean]

Hi Anna,
Ditto for you also...wishing you all the best - please let us know
how you are doing...

God Bless You,
Jean

[cherylynnie]

Annna,

Sorry, I misunderstood, I thought you had already started a new series of treatments. I guess our timing is about the same. I am going to ask my oncologist about a specific breast cancer oncologist,which may be best for me. Yesterday I figured his ears must have been burning because I was surfing the net for new doctors when his office called and said that he wanted to see me today(Tues) at 3:30. He better have all the reports back since I had to move my schedule around and find someone to take my son to the orthodontist. My daughter has soccer practice at 6:00 the first one of the season and I will have to find someone to come and pick her up for that as well because we may not be back in time to take her.

MJO and Jean,

Thank you so much for your well wishes and good luck to the end of your treatment Jean.

Lani,

I corrected it from gemzar to xeloda. So do you mean not to mix tykerb with Xeloda?

Thank you all so much!

Cheryl

[Sheila]

Cheryl

A recurrence is always a disappointment...I have had my share, but each time I know that although I want to be done with treatments, I need to put my gloves on and begin the fight again...I plan to be the one who comes out on top over this disease....I hope that radiation can take care of it....if not, Xeloda is a good start and easy to take, and can be given with Tykerb for better results.

[atdec05]

Hi Cheryl,

That's great that you are able to see a breast cancer oncologist so quickly. My 2nd opinion dr. called me today after the tumor board meeting to confirm his recommendation of TCH + radiation. I am seeing my regular oncologist tomorrow, and a 3rd opinion next Monday. It's crazy that there's only one set of pathology slides and they all want them! So I'll be picking them up from one place and delivering to another place today, then need to get them to the 3rd place in time for the Monday consultation.

My 2nd opinion said he would characterize my recurrence as regional (to the chest wall). Because it's dermal lymphatic, he recommended systemic treatment in addition to radiation. He said it was skin mets, but still considered it curable, hence his aggressive treatment recommendation.

Let us know how it goes with your oncologist. Is this a 2nd opinion? I've heard Xeloda & Tykerb or Xeloda & Herceptin are good combinations. Even if Herceptin by itself doesn't work, it can work with another drug.

take care, Anna

[Vanessa]

Sorry to hear about your reoccurance. I hope you are able to see the end of treatment again soon.

[cherylynnie]

Here is what the pathology report said -


Skin and subcutaneous tissue showing local recurrent ductal carcinoma, Grade III.

No breast tissue is identified. The lesion is recurrent in subcutaneous tissue and fat with features similar to those present in previous diagnostic material.

Hypercellular spread wih atypia.

The oncologist recommended all kinds of tests but believes it was left behind in the tissues folds during my mastectomy/tram flap reconstruction.

Though he wants to see results from all the tests, he believes that a wide excision and radiation should do it. He said in my case, only 2% of patients reocur. So my answer was of course, why can't I win the lottery:) then?

So I have to call and get all these test scheduled so I can have the surgery and then get on with it.

Cheryl

[atdec05]

Hi Cheryl,

Sounds like you've got a treatment plan in place and can get on with it. My wide excision surgery was easier than the lumpectomy and masectomy. Hopefully yours will be as well.

What kinds of tests does your oncologist want to do?

take care, Anna

[Lani]

I assume the tests pending are the ER,PR and her2.

Good luck on the reexcision and radiation therapy.

PS--I was only quoting the only FDA APPROVED use of tykerb at the moment--
given with xeloda for pts who have failed chemo with or followed by herceptin. I mis-typed gemcitabine instead of capecitabine.

Good to keep in your armory--but hopefully never to be needed!

[cherylynnie]

I am stil confused alittle. Even though I wrote down questions and asked them. I came home still with things that I didn't think of that I wished I would have asked.

I am going to get a breast MRI before the wide excision, and a Mammo on the left side, because the surgeon biopsied a fatty tumor last August on the unaffected side. I had asked her to take it out when I had this excisional biopsy last week, but she convinced me not to. Now since I have a recurrence she must have changed her mind because now she wants to take it out as well. So the mammo will help us decide for sure and I had it scheduled for the 20th of April and got it moved up. The oncologist also ordered ct scans, and my husband asked for a brain MRI and pet scan so he conceded. And of course he ordered blood tests. He is going to check to see if my ovaries are working or not. Since I haven't had a cycle in 14-15 months now.

He said the tumor was very small. I thought it was a centimeter so I am confused on that but when I have my pre-op apt with the surgeon I am going to go over all that with her.

He sees to think that there hasn't been enough to learn about tykerb yet. I don't know. I have plenty of time to find a second opinion if I feel the need. I will talk to my surgeon about that as well.

THank you so much!! I hope you are doing well.

Cheryl

[atdec05]

Hi Cheryl,

I talked to my onc. yesterday but like you have more questions than answers. She agreed with my 2nd opinion that I should have a taxane, but did not think TCH was the answer since I had recurred on Herceptin. She was thinking TC, then Xeloda & Tykerb. But didn't know if I should be kept on it indefinitely or how long it should be given in a supposedly adjuvant setting.

I talk to Dr. #3 on Monday who's a research/clinician at a research hospital & hope to be able to figure this out so I can start treatment! My radiation oncologist is recommending to start with radiation, since I have local recurrences in the skin/chest wall. Sounds tempting to start something, but I've read that taxanes can make cancer cells more susceptible to radiation.

Anyone have a similar diagnosis and what did they do?

- Anna

[Becky]

Anna


Since your recurrence was near the scar - a place where it is very difficult for chemo or Herceptin to penetrate, why give up on Herceptin. It works EXTREMELY well with taxanes. Also, Tykerb could be difficult to obtain and get paid for because a local recurrence does NOT upgrade you to stage 4 disease (that is reserved for distant mets only) so you are still considered whatever your original stage was but can obtain additional treatment for the local recurrence.

Just my thoughts here. Also, my girlfriend who had a local recurrence (triple negative pathology), had rads with concurrent Xeloda (as chemo (and Herceptin) enhance the effects of radiation).

Hope this helps

[atdec05]

Hi Becky,

I am considered Stage 3B now because of recurrence. Just got the write up from my 2nd opinion dr. and his recommendation of TCH makes sense. I agree that it's possible my recurrence happened either a) because it was in the skin and chemo couldn't reach it, or b) because I didn't use a taxane in combination with Herceptin.

I think Herceptin is still worth a shot and save Tykerb for later if needed. I actually do qualify for Tykerb now based on being locally advanced (3B). My 2nd opinion dr. also talked about Xeloda & Herceptin with radiation, but preferred TCH, then radiation.

Well, one more opinion this monday to hopefully help sort things out.

Did your girlfriend with local recurrence have dermal lymphatic involvement?

- Anna

[cherylynnie]

My recurrence happened, so they tell me because the chemo and herceptin couldn't get to where there was hardly any blood supply????

[atdec05]

Hi Cheryl,

That's the same explanation I've gotten for my local recurrence. Though I thought: the chemo & Herceptin couldn't get to my skin because it's delivered via the bloodstream, but apparently there was enough of a bloodstream to cause my recurrence to grow.

- Anna

[Becky]

Dear Anna


I am not sure about my girlfriend. She never mentioned skin involvement only the new lump.

She is doing very well and is almost 15 months out from the recurrence.