calling all t1A (> 1 mm but < 6 mm) sisters who are HER2+
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sweetmamaj - I'm not up on the equivocal stuff - but I'm betting someone on the triple + thread will know more/point you in the right direction. Here's the thread - good luck!!!
https://community.breastcancer.org/forum/80/topic/764183?page=931#post_4459108
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Hi Dancetrancer, thank you for the lead! I appreciate your help!
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Had my Hopkins second MO opinion visit last week. Doc was fantastic. Took so much time with my case! Really listened. Affirmed my questions.
No specific recommendations yet, but he has provided me updates as he & other Hopkins specialist review my situation. They are re-evaluating my pathology slides. Then will give a recommendation.
What I have learned is that research shows the isolated tumor cells in my sentinel node are not a reliable indicator of future reoccurence. My tiny tumors put the chemo question on the fence. Multiple foci (5 tiny tumors) seems to be more of the concern than isolated tumor cells. However, nailing down the percentages of reoccurence is a big question, a wiggly target. I've read recent research with everything from 1%-14%. Most likely in the middle of that, depending on who you talk to. The studies are so small. I'm surprised - Docs tell me I'm a rarity, but I think this will be happening more and more with early detection.
So here I sit -- a few milimeters away from a clear decision! Hopefully I can get therenext week. My preference would be just Herceptin. Don't know if that is a reastic possibility. We will see where this goes...Thankful for such a caring, experienced medical team.
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So glad you have such a great medical team Horsegirl. Wishing you all the best as you make this difficult decision!
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horse girl it's so very hard to know what to do with this early stage stuff! Super early detection is just not the norm it doesn't feel like. The right decision will make itself clear to you. Hoping you get resolution soon
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Hi, again, everyone -
Just had my first chemo this week - got into the Taxol/Herceptin v TDM1 study, but ended up w/ Taxol. So may lose my hair. Decided I can't do the cold cap treatment - not enough $/time/an extra hand to help each time. And when I read no hair coloring in the meantime, figured it would look pretty strange - blonde on the bottom/very dark brown mixed w/ grey on top. ;-) A little worried as I didn't get an appt for wigs earlier at DF, but now have an appt for next visit, so hope it holds.
So pre-Taxol, I had Benedryl and Decadron. I reacted to the Benedryl! Heart pounding, and breath short. Very much like my typical reaction to Novacaine, so I knew it would wear off, but had a worried audience. At least the dose will be reduced next time. No reaction to the Herceptin/Taxol!
Yesterday I was Mary Sunshine - I'm a positive person, but even I thought it was a bit over-the-top. LOL Then this morning at work, became anxious and a little paranoid - not at all like me - had to go walk around our very large building 3 times to calm down. Which I did. Was ok after about a half hour - but was scary. I put a call in and heard back quickly - was suggested these were reactions to Decadron, and it appears so. At the end of the day I was washed right out, but when I got home, made myself get into the car, and drive to my favorite spot for a very long invigorating walk. Now feel great. So true that if you push yourself to move, it really improves things.
Very lucky that the physical side effects one might expect w/ chemo are not there - at least not yet.
And now feeling, perhaps, a bit more camaraderie with the continued experience.
Best of luck to all of those who are making the decision. I guess mine was really made for me, but I am so appreciative of the information I've received at a great cancer center. Makes such a difference to have the attention paid to you individually. My local hospital just seems too overwhelmed to be able to thoroughly educate patients on such a significant issue. Will be doing many sessions there as well, but glad to have treatment overseen by the best.
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Hi Peg - sounds like you are in the ATEMPT trial - have you read/posted on that thread? Me and a couple others on that thread are on T/H, it's a great group as well. One woman is right where you are starting the first Taxol today. I hated Decadron and was weaned totally off it by about infusion 4. I also hated Benadryl and switched to an oral antihistamine instead which worked fine without the weird Benadryl side effects. Claritin or Allegra are both fine options. I did well and worked through the first two months of Taxol, then the fatigue and GI symptoms got a little too much for working. Everyone is different though. Most folks don't have hair loss on weekly Taxol for at least a month, sometimes longer (and quite a few thin but never lose all hair) so you have plenty of time to figure out your head covering desires. Glad you have a great team you can have confidence in - it makes such a huge difference! Believe it or not the 12 weeks do go by quickly - it's time to plan your post chemo celebration so you have something good to look forward to! The Herceptin only part is easy and you can celebrate again when that is done - I certainly plan to!
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Thanks, TTfan - I will check out that thread. Good to have others in the same spot.
Getting my second treatment at local hosp tomorrow - 1st there, and a friend coming in from out-of-town to help. Feel a bit awkward having someone accompany me just 10 miles from home, but if I feel pretty good, well, then, we'll just enjoy the rest of the day. :-)0 -
I will have my 3rd weekly treatment next week. I'm still very nervous and worried about side effects and I'm trying to be proactive. 12 weeks seems like a long time. Anyone have any advice for anxiety?
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Meditation. Exercise. Join a thread for chemo for the month you started so you can share with others going through the same fears. Join a support group in person if you have one. Get counseling for yourself. In short, get support, find ways to relieve stress, and be easy on yourself. It's a hard time, but you will get through!
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Peg - I had someone with me for every Taxol session. I really needed them when the pre-med included Benadryl as I was still pretty zonked out afterward, but even after that stopped it's just nice to have a familiar face there. Best if it's someone who knows how to read your cues about just sitting quietly together vs chatting and interacting. Sometimes I wanted one, and other times the other - all my "chaperones" were very good about that. Sometimes the nurses are busy, and it's nice to have someone to bring water/juice and then help unplug the IV pump when you have to go pee
.Jenphil - It seems like forever now, but it won't in retrospect. The last few weeks sped by, I think I slept through a lot of that time, - the worst for me was around week 9 when I already was more than sick of it all but felt like there was so far to go. It would be good to plan something special, but low energy, around week 9 to 10, maybe a weekend away if someone else can plan and pack etc. Actually, if you can come up with something low key but fun every week it helps. Since I felt fine right after infusion (my worst symptoms were always 2 to 3 days later) I usually had something fun to do with my "chaperones" - lunch out, a movie, a casual stroll in a pretty place, window shopping etc. etc. You know what is fun for you. The other thing that helped me so much was being sure to walk outside every day. It was rare when I couldn't, and even when I didn't think I had the energy, it always lifted my spirits and brought back my sense of perspective. I preferred being alone but others may want a companion. For me, it was my time when I didn't have to think about any one else or what they were thinking of/about me. Just me and the trees and birds who never once asked me a dumb question or stared at my scarf. And all the things dancetrancer said - it's all kinds of small things together that get us through!
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Finally got results from my second opinion MO. I'm going to pass on chemo and start Herceptin next week, as soon as I get a baseline Echocardiogram. Also will get my rads done in September. Feeling confident about this plan.
Figure I should have someone go with me to my first infusion. Any advice about the Herceptin
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Horsegirl - Your diagnosis sounds a lot like mine. I'm 59, and had a .5cm tumor with multi foci of single cells. I also has a micromet to one sentinel node (.4mm). The recommendation was no radiation, but taxol and herceptin. I chose to do the Herceptin only. My MO is fine with my decision. I just had my 12th Herceptin on Monday, and have had no SEs other than a runny nose. My infusions are over 30 minutes.
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ca55 - that's so good to hear! Glad you also found an MO who would go off the party line. Did your veins hold up ok for all these infusions or did you need a port? I'm a little concerned for my wimpy veins. Is the infusion irritating?
I also had extensive DCIS treated with LX so feel like the radiation is good protection to my breast, while Herceptin will go after anything systemic. Been in the "waiting room" a long time working towards this decision. So happy to move on to a season of action - kicking cancer's butt!
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Horsegirl - I understand the need for the radiation with a lumpectomy. I had extensive DCIS too, so a mastectomy was my only choice. No, I do not have a port, and the infusions are not at all irritating. They give you a Benedryl with the first infusion, and if there is no allergic reaction, they skip it after that. The nurses also warm your forearm with a heating pad, and that really helps if they are having trouble finding a vein. I'm sure you'll be just fine!
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Just looking through some articles on very small Her2 + tumors, and I found this study http://www.onclive.com/web-exclusives/Risk-of-Recu...
Basically, it puts distant recurrence free survival for 5 years at 98% in women who are NOT treated with chemo or Herceptin.
This contrasts starkly with the stats my MO gave me and this article by MDAnderson http://www.mdanderson.org/newsroom/news-releases/2...
The 1st study is newer but I don't see how to reconcile the conflicting data from the 2 studies and others I've seen. Anyone else want to look at the studies and comment?
Kendra
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kcat,
I'll take a look.. My tumor was 7mm and what you stated about disease free survival with no treatment was what my doctors at Cedars Sinai told me. They didn't recommend chemo despite the Dana Farber study as they're pretty conservative about treatment, however my docs at UCSF were very insistent and being a cautious person , and having done this 25 years agonI opted for both taxol and herceptin. Glad I did.
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The second study at MD Anderson looked at 98 patients who were HER2+ with < 1 cm large tumors. They reproduced their findings by comparing to a set of patients in Europe.
The first study looked at 171 patients.
These are small studies in the scheme of things.
I've seen varying results between studies over the past few years. I'd like for someone to put ALL of the data from these studies together and do a systematic review. Haven't seen that done yet...?
My gut tells me it is still a gray area, but I've been leaning towards thinking the smallest of tumors don't need treatment. Exactly where that cut-off is is still controversial. I feel I was overtreated with TCH, but it was my choice. There wasn't as much data at the time for my case. I'm happy they now have taxol+Herceptin and that some are even offered Herceptin only for t1a tumors.
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I'm sticking with the Dana Farber data and shooting for spectacular...give it to me baby....
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ha ha ha, love it tresjoli2.
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for what it's worth dancetracer I had 1.5mm of cancer and 1 area of microinvasion in my dcis to go with it
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Suladog and dancetrancer, thanks for your thoughts. I do question from time to time if I was overtreated with the AC/TH chemo regimen that I got. I did have a few other factors that influenced my MO's decision regarding treatment (age, grade--turned out to be 3 at surgery, ki67 of 61% and oncotype score of 54). The oncotype was done before we had my FISH results back on the Her2. Even though it would have been nice not to have done that nasty AC chemo, I'm ok with the treatment decisions I made at the time.
Kendra
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kcat,
At the time I was diagnosed the recommended treatment had changed to Taxol/ herceptin for 12 wks then herceptin alone for the rest of the year. My Dr at UCSF was Laura Esserman and she wanted me to do the Attempt trial there which would have been TDM1 / herceptin but since I'd had cancer before 25 yrs ago I was ineligible for the trial, so instead I got the new T/ H protocol. The reason Dr Esserman suggested the trial was TDM1 was a targeted antibody like herceptin so no hair loss, instead at their suggestion I did Taxol,and cold capped so I kept my hair.
The big thing I got from what they said was with people with HER2 below 1 cm and no nodes, she told me they didn't want to treat me too much, nor too little. Without the new Dana Farber report I'm sure I'd have been given some other combo.
25 yrs ago I was triple negative and they gave me CMF even though there was no nodal involvement, it was grade three and I was in my 30's taxol was a lot tougher, I'm glad I never got the harder stuff I would have gotten say a year earlier, this time I was grade 2 . I don't regret being treated as I was, since I'd be too nervous to do nothing
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There's no question that treatment is a moving target because of research. I'm hoping the for future for others will be much clearer. For me, it comes down to HER2 biology rather than size of tumor (plus those cells already getting out to a lymph node.) And since we are in such a grey area, having peace with the decision plays a much stronger role in decision.
I have my first Herceptin infusion tomorrow.
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Just wanted to check in and let everyone on this unique circumstance board know that I had my 2 year mammogram on the "unaffected" breast as well as my breast surgeon exam this past Monday. All went well, and I am celebrating the start of Year 3 Cancer-Free. Still on tamoxifen with no recognizable side effects. Good health to all!
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Congratulations Rosamond!!!
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so happy for you Rosamond
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Had first Herceptin infusion. Experienced severe chills & low grade fever that night. All better with 24 hours. Now I know what to expect, although thinking it will be less in the future since the first was a loading dose. I can handle this
Feeling good about my decision.0 -
Yay horsegirl! I think you likely will indeed find the following infusions to be tolerated better than the first loading dose. Also, if you still have symptoms, you can ask them to slow the infusion. Several women told me it reduced their symptoms, seemed to work well for me, too.
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Hi!
I wrote a long, detailed history but scrapped that for this briefer synopsis.
September 2014. A 'spot' is found via a CT scan in my mediastinam. Doctor says follow up immediately with Pulmonologist.
March 2015. Pulmonologist orders a PET scan. PET scan shows slightly illuminated spot in chest and a very bright spot (3x illumination) in right breast. Pulmonologist tells me spot in my chest is an enlarged Thymus gland and not to worry about it. Says bright spot in breast is probably cancer. Tells me to followup with oncologist and primary. Primary orders a 3D mammo.
April 2015. Had mammo and ultrasound of both breasts. Suspicious features seen only in right breast. A core needle biopsy is ordered for right breast. Results of core needle biopsy: DCIS, Grade 3. Comedo necrosis cells. ER+ 90%. PR+ 15%. Non-invasive. Radiologist thinks an invasive component exists despite biopsy findings. Nurse tells me HER2 testing of DCIS is not standard.
May-June 2015. Received 3 BS opinions. After receiving the opinions and having my fear of rads, lymphedema, slow recovery, etc., addresed, I selected a BS and settled on a UMX with one SNB.
August 2015. Age 45. Had UMX with 2 SNB's. Preliminary pathology reports that nodes are negative. Later path. report states that margins were negative. DCIS was 5 cm and extensive and multicentric. Also found was multifocal invasive ductal carcinoma. No special type. Nuclear grade 3. Ranging in size from 0.1 cm to 0.3 cm in greatest linear extent. Stage 1A.
September 2015. Saw a new Oncologist who stated that no further treatment was necessary due to having a mastectomy, negative nodes, clean margins and IDC less than 1 cm. Ordered a CEA and a CA 27.29. Both test results were normal. Addendum to the pathology report is finally released and finds the following regarding the IDC:
ER+, 90%. 1-2+. H score: 120
PR+, 70%. 1+. H score: 70
HER2 by IHC: Positive. Score 3+
Ki67: high proliferative index 87
MO will present my case to tumor board next week.
Felt hopeful because I thought I was done. This is definitely a blow as I've been pulled back into the frightening and uncertain world of risk vs benefit ratios and potential hormone and/or chemo treatment.
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