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Old 06-07-2011, 04:52 PM   #1
Helen G
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Question After Herceptin

Hello everyone, I have been hanging around this site for sometime. I just finished my ( I hope) last herceptin treatment Wednesday. My doctor says there is nothing else to be done, because I have completed the treatment designed for my cancer. This entails A/C ,Taxol/ herceptin ,and then a year of herceptin . I am concerned because I have read the maintenance part of this process is to have PET scans or blood tests to make sure the treatment was successful. My doctor says I have to come in every three months to talk with her but their will be NO PET scans or blood tests. She told me that the time of becoming symptomatic and the time recurrence is seen on a scan is only one month and the treatment would be the same. I was never symptomatic I felt the lump deep in my breast on a self exam and it was not picked up on a mammo. by the time it was seen it was the following year and it was because i said something and they sent me for a sonogram right after the next years mammo. By this time it was in my sentinal node. That was the only node however treatment started with a full mastectomy reconstrutive surgery and then the chemo herceptin treatment. My question is, Is this just my doctor or has everyone experienced this confusion?
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Old 06-08-2011, 04:17 AM   #2
chekmark
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Re: After Herceptin

Not sure since I have not completed herceptin yet. I go to tomorrow for herceptin and I will ask. It's funny how we cannot wait to be done with treatment and then when it is over we feel like we lost our security blanket. Gradulations on completing treatment. Good luck to you.
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DX Sept 30 2010 at the age of 49. Oh crap! 1.5 cm idc, stage 1 grade 3 er/pr+, her2+ no lymph nodes, mastectomy Oct/10. Started 6 rounds of TCH Dec/10 and will continue herceptin until Nov /11 and just started femara.
Stray kitten found my lump while I was playing with it. It is now my pet and my dog is not real happy about that.
Mammo good
last herceptin 11/21/11 YAY
reconstruction 12/09/11
Chapter closed 12/10/11, hopefully, fingers crossed
Bone scan, chest xray, clear
04/27/12 Expander removed, implant put in, ahh sigh of relief, much more comfortable
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Old 06-08-2011, 05:56 AM   #3
Elizabethtx
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Re: After Herceptin

My story is similar to yours. Asymptomatic until I felt the lump, in sentinel lymphs. I asked the same questions and was told no scans unless warranted. I have finished all treatments except continuing on Tamoxifen. The onc said 2weeks of persistent pain should cause you to get a specific check up, otherwise blood work only every 4 months for now! Yes, I agree it seems scary not to confirm NED. I will wait and pray myself through this like everyone else!
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Invasive Ductual Carcinoma, left
2/28/10 Bilateral Mastectomy (tissue saving for future reconstruction)
3.2 cm 2/18 +lymph nodes
Stage 2b; E+/P+/Her2 +++
Nottingham score grade 2
Ki67 30%
3/2010 A/C 4 DD/2wks
5/2010 Herceptin/Taxotere 4D/3wks
8/2010 Herceptin until May 2011
Tamoxifin 20mg
9/2010 RAD 34 treatments
Pet scan Aug 2010 clear
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Old 06-08-2011, 02:08 PM   #4
1rarebird
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Re: After Herceptin

Helen--It sounds like your oncologist and mine are singing from the same song book. Even though mine has done tumor markers and other blood work on me twice since I finished Herceptin last summer, he told me that my body will tell me if I metastasize or otherwise recur. Any lumps that I notice or persistent pain I experience will be the clues, according to the good doctor. My doctor also told me that the statistical evidence points to no correlation between the time a recurrence is first detected and overall survival.

So I guess we watch and pray as the days roll by. Each one is a precious gift and we can look forward to the time in the future others on this boards have said will come when our anxiety diminishes. --bird
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Male Breast Cancer, DX 5/15/09, IDC, STAGE 1, 1.7 cm, HER2+++, ER+(95%)/PR+(75%), Ki67 40%, grade 3, 0/5 nodes, TX: mastectomy, TCH finished 7/19/10, radiation 6 wks., Tamoxifen on going, bisphosphonate 24 mos.
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Old 06-08-2011, 02:14 PM   #5
1rarebird
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Re: After Herceptin

Helen--It sounds like your oncologist and mine are singing from the same song book. Even though mine has done tumor markers and other blood work on me twice since I finished Herceptin last summer, he told me that my body will tell me if I metastasize or otherwise recur. Any lumps that I notice or persistent pain I experience will be the clues, according to the good doctor. My doctor also told me that the statistical evidence points to no correlation between the time a recurrence is first detected and overall survival.

(I will note that my surgeon at my one year anniversary did order a PET for me since he wanted to compare it to the one done at my diagnosis. It showed no changes but did confirm I still had a serious thyroid problem that eventually led to another surgery.)

So I guess we watch and pray as the days roll by. Each one is a precious gift and we can look forward to the time in the future others on this board have said will come when our anxiety diminishes. --bird
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Male Breast Cancer, DX 5/15/09, IDC, STAGE 1, 1.7 cm, HER2+++, ER+(95%)/PR+(75%), Ki67 40%, grade 3, 0/5 nodes, TX: mastectomy, TCH finished 7/19/10, radiation 6 wks., Tamoxifen on going, bisphosphonate 24 mos.
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Old 06-08-2011, 08:40 PM   #6
Jackie07
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Re: After Herceptin

Hi Helen,

Congratulations on completing your Herceptin treatment today! Perhaps both oncologists (Rarebird's and yours) are familiar with the study cited below:

Curr Oncol Rep. 2008 Jan;10(1):38-46.
Breast cancer follow-up in the adjuvant setting.

Khatcheressian J, Swainey C.
Source

Division of Hematology/Oncology and Palliative Care, Massey Cancer Center of Virginia Commonwealth University, PO Box 980230, 1101 East Marshall Street, Richmond, VA 23298, USA. jkhatche@vcu.edu

Abstract

Breast cancer may recur through 15 years and beyond after diagnosis; thus, breast cancer patients require long-term follow-up after adjuvant treatment to detect recurrent disease.

History taking, physical examination, and regular mammography are still the foundation of appropriate breast cancer follow-up in the adjuvant setting. Clearly, breast MRI has a role in certain high-risk patients, but in moderate-risk patients, the decision to use MRI must be based on the complexity of the clinical scenario.

Other routine imaging studies (CT, positron emission tomography, and bone scans) and laboratory testing--including tumor marker assessments--in asymptomatic patients have not demonstrated an improvement in survival, quality of life, toxicity, or cost-effectiveness.

Survivorship issues are also an inherent part of breast cancer follow-up; physicians should make every effort to address supportive care issues unique to breast cancer survivors including hot flashes, bone health, neuropathy, and risk-reduction strategies.
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Last edited by Jackie07; 06-08-2011 at 08:48 PM..
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Old 06-12-2011, 06:57 PM   #7
Helen G
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Re: After Herceptin

The one thing my doctor did say was that now having three or less lymph node involvement has the same prognosis as having no lymph node involvement. This however does not make me feel secure. As I had felt one lump, and I actually had three tumors.
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Old 06-12-2011, 07:00 PM   #8
Helen G
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Re: After Herceptin

It is so shocking but at least I am not alone. Thanks for posting. Stay strong...
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Old 05-01-2012, 08:01 PM   #9
evergreen
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Same Story Here in Canada

My oncologist says the same thing, that the research shows no benefit for regular testing for mets and that survival is not improved by starting treatment before symptoms occur. She says if I am feeling good, why would I want to start chemo sooner, if there is no proven benefit to starting earlier. She says also that psychologically, we need to get away from constant reminders of illness, and that we should concentrate on each new day and the joy of life, not the prospect of "the end". I admit to having a hard time doing this, but I am trying....
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Dx Nov 2010 at age 65 - 3.5 cm invasive ductal, 8 of 15 nodes. ER-,PR-, HER+++. Lumpectomy, chemo, 6 weeks rads, 52 weeks herceptin finished April 2012.
CAT,PET, bone scan, ultrasound and mammogram in Spring 2012 - NED.
Cherishing every day, but realistically "watching my back" (or should I say "front"?
Eating foods thought to fight cancer, exercising every other day,using my garden as my mecca of peace, and loving my supportive husband more than ever.
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Old 05-02-2012, 07:41 PM   #10
JillaryJill
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Re: After Herceptin

My onc does not scan or do blood tests. She has an open door to report symptoms that last a month. It causes me anxiety also, that I just got "cut loose" after my last Herceptin treatment, but I had a follow up visit with my breast surgeon, my plastic surgeon and next week I see my radiation oncologist, so it seems a doctor is always looking at me! I will see my onc in another few months also. As time goes on I do get less anxious about it.
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DX November 2010
Brain MRI, CT of lung, liver, bone, all clear
Double Mastectomy w/expanders December 1, 2010
ER- PR- Her2+++, grade 3, 12 positive nodes out of 15
Stage IIIc
Started TCH/Chemo December 31, 2010
6 rounds TCH
Herceptin every 3 weeks for a year
33 rounds of TomoTube radiation, to chest wall, neck, skin and lymph area
September, 2011, MRI to lower spine, hips, DX bulging disk, L4 & L5, pain not from cancer
Expanders removed, implants in Dec 1, 2011
Finished Herceptin, December 21, 2011
August 2012, CT of chest and abdomen, all ok
Enrolled in MC1136 Phase I Peptide Vaccine Trial at Mayo Clinic, Rochester, Minnesota
March 2013, First Vaccine
April 2013, 2nd Vaccine
May 2013, 3rd Vaccine
June 2013, 4th Vaccine
July 2013, 5th Vaccine
August 2013, 6th Vaccine Done!
September 2013, Mayo visit, Echo results 68, vaccine did not effect my heart! Blood work normal.
January 31, 2013, Mayo visit, Echo normal
February 23, 2014, Numb lips on right side, Brain MRI, normal!
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Old 06-02-2012, 08:37 AM   #11
Firework
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Re: After Herceptin

@rare bird, did you ever live in North Carolina? Specifically, Camp Lejuene?
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6/23 bilat mast, port 6/27 expanders, 8/08 AC x6, Herceptin 1 yr., Arimidex -Jan 1st 2012- 5 years, reconstruction- exchange surgery 3/30, nipples 7/2012? Then tattoos......
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Old 06-02-2012, 08:49 AM   #12
1rarebird
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Re: After Herceptin

Fire--No, Camp Lejuene has never been home for me. But I am aware of the cluster of cancers, particularly male breast cancer, that have occurred in the residents of the camp back in in the 1980's and earlier. The carcinogens found in the drinking water of that facility during those years lead many to believe that the cancers were caused by those pollutants. My breast cancer may have also been caused by ingestion of carcinogens, but they didn't come from Camp Lejuene. Thanks for asking---bird
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Male Breast Cancer, DX 5/15/09, IDC, STAGE 1, 1.7 cm, HER2+++, ER+(95%)/PR+(75%), Ki67 40%, grade 3, 0/5 nodes, TX: mastectomy, TCH finished 7/19/10, radiation 6 wks., Tamoxifen on going, bisphosphonate 24 mos.
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Old 06-16-2012, 09:29 AM   #13
Mtngrl
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Re: After Herceptin

I never had symptoms, tumor markers or any pain, other than a thickening and slight enlargement of the breast that had the tumor, and some pain (from my bra pressing on the tumor). But after confirming bc they did staging studies and found metastases in that manner.

Nevertheless, I can see the logic of not doing anything unless and until symptoms crop up, especially if "early" diagnosis of Stage IV truly does no good in terms of overall survival. Actually, it's pretty clear that early diagnosis of earlier stage bc also does no good in terms of overall survival. The recent modest drop in breast cancer deaths is from better treatments, not early detection.

I had a 6 month respite from scans. Then I learned of some progression (totally asymptomatic.) So I'm on a different treatment, and I'm having symptoms from the drug, not the cancer. I enjoyed that 6 month break.

My current treatment is part of a study, and I'll be scanned every other month. I hate "scanxiety." Not a big fan of having Stage IV cancer either, but that's the breaks.
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_____________________________
4/19/11 Diagnosed invasive ductal carcinoma; 2.3 cm tumor, 1 axillary lymph node
HER-2+++, weakly ER+ (10%)
4/29/11 CT scan shows suspicious lesions on liver and lungs
5/17/11 liver biopsy
5/24/11 liver met confirmed--
Stage IV at diagnosis
5/27/11 Begin weekly Taxol & Herceptin for 3 months (standard of care at the time of my DX)
7/18/11 Switch to weekly Abraxane & Herceptin due to Taxol allergy
8/29/11 CT scan shows no new lesions & old lesions shrinking
9/27/11 Finish Abraxane. Herceptin every 3 weeks. Begin taking Arimidex
10/17/11--Brain MRI--No Brain mets
12/5/11 PET scan--Almost NED
5/15/12 PET scan shows progression-breast/chest (mediastinal lymph nodes)/spine (one vertebra)
5/22/12 Stopped taking Arimidex; stay on Herceptin
6/5/12 CT scan
shows everything stable
6/11/12 Started Tykerb and Herceptin on clinical trial (w/no chemo)
8/1/12 CT scan--stable.
9/24/12 CT scan--No new mets. Everything stable.
11/19/12-Stable CT scan
12/13/12 CT Scan--NED

3/11/13 CT Scan--two small new possible mets and odd looking area in left lung getting larger.
4/2/13--Biopsy of suspicious area in lower left lung. Mets to lung confirmed (but it says cancer cells are "scant").
4/30/13 Began Kadcyla/TDM-1
8/16/13 PET scan "mixed," with some areas of increased uptake, but also some definite improvement, so I'll stay on TDM-1/Kadcyla.
11/11/13 Finally got hormone receptor results from lung biopsy of 4/2/13. My cancer is no longer ER positive.
11/13/13 PET scan mixed results again. We're calling it "stable." Problems breathing on exertion.
2/18/14 PET scan shows a new lesion and newly active lymph node in lung, other progression. Bye bye TDM-1.
2/28/14 Begin Herceptin/Perjeta every 3 weeks.
6/8/14 PET "mixed," with no new lesions, and everything but lower lungs improving. My breathing is better, though.
8/18/14 PET "mixed" again. Upper lungs & one spine met stable, lower lungs less FDG avidity, original tumor more avid, one lymph node in mediastinum is more avid.
9/1/14 Begin taking Xeloda one week on, one week off. Will stay on Herceptin and Perjeta every three weeks.
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