Do people have chemo?

Tricia38

Hello,



I was initially diagnosed with DCIS and ended up with a mx and immediate reconstruction in June. Following the mx the biopsy found micro invasion of app 2-3mm which tested HER2+. My breast surgeon and oncologist have recommended no chemo as I am well under 1cm and the 5mm rule where they would recommend chemo but have left the option available for me.



I am considering taking chemo to reduce my risk or recurrence. I am 38 with 2 young children and do not want to regret not having been aggressive in my treatment now should I end up with a secondary recurrence. I am getting a second opinion tomorrow but know I will get the same opinion.



I am just wondering what other people with a similar diagnosis have done and if I am being over concerned and should take my oncologists advise. I do know it s my decision but welcome any other peoples experience.



Thank you all for any help you can provide.



Tricia

paloaltomom

Hi Tricia --

I was also initially diagnosed with DCIS with a stereotactic biopsy, but a 3mm x 2mm IDC focus was found within a large DCIS region in the tissue removed during the mastectomy. I received a total of 4 opinions from medical oncologists. The UCSF HER2 specialist (who practices outside of my HMO) recommended adjuvant treatment and 2 other oncologists (within my HMO) recommended no further treatment.

I weighed my options carefully and decided that I wanted to err on the side of caution (i.e., seek treatment). The 4th oncologist (who is in my HMO) agreed to chemo + Herceptin as long as I understood the trade-offs between benefits and risks. She has since read through recent journal articles supporting chemo and biologic therapy for us patients with very small invasive HER2+ tumors and believes mine is an appropriate treatment plan.

I had asked about TCH and Vinorelbine/Herceptin as possible therapies, but she recommends 12 weekly Taxol/Herceptin + Herceptin every 3 weeks for the rest of the year.

As with many others here, I arrived at my decision after considerable deliberation. An engineer by trade, I even drew up a decision tree to more thoroughly take into consideration risks and benefits with and without treatment.

I will try to ameliorate the side effects as much as I can through dietary supplements, cold caps, and perhaps fasting (though I haven't yet figured out that last piece yet).

 Good luck!

Tricia38

Susan,



Thank you for your advise. I saw a different oncologist today who is very familiar with HER2+ cancers and is also like me with 2 young children and my age. She recommended chemo (TCH) and Herceptin. She said if were her she would definitely do chemo and more recent articles supports chemo and Herceptin even for Stage1a.



Glad to have made my decision. I just want to get on with it now!



Tricia

paloaltomom

Hi Tricia --  So glad to hear you resolved this very important decision and that you are in sync with your oncologist.

The UCSF HER2 specialist gave an interesting argument for adjuvant treatment.  In a case with a large DCIS lesion, it is impossible for a pathologist to exhaustively examine the entire specimen on a microscopic scale.  I had 3-4 pathology reviews.  In the original, slices were taken at no more than 1cm in thickness.  When I requested another pathology look, additional slices were cut so none measured more than 0.5cm in thickness.  A total of one invasive focus was found, but if you think about it, there could be more lurking inside of any one of those 0.5cm thick slices.

Carrying this logic further, you could easily have an additional but obscured tumor with thickness <0.5cm but width or depth >0.5cm, which would automatically kick a T1a tumor up to a T1b or greater.  And both NCCN guidelines and Eric Winer (Dana Farber) recommend (at least) considering treatment for T1b Her2+ patients.

Take care 

Lmont79

I am a new member and I am having a difficult time figuring out what topic/group to join. I am 33yrs old was diagnosed with large DCIS stage 0 in my right breast in April 2012. Based on mamo, MRI and ultrasound my tumor seemed Iintact and I had no lymph node swelling. My core biopsy came back with the following diagnisis: nucleur grade 3, ER + 14 perc., PR-. Because of the size on the DCIS and my age I opted for a skin sparing bilateral mastectomy with SND. My left breast and 1 left side lymph node came back completely negative, no sign of cancer. On my right side I hade 5 lymph nodes removed, all negative. The DCIS was 7 cm with very small margin .5mm on both the posterior and anterior side, my O'S took the top layer of pectoral muscle to help with the small posterior margin. All margins were clear with the exception of 1 microscopic DCIS evident in one of the path slides. My pec muscle and nipple and ariola skin were all negative. I have a centrally located (within DCIS) 2 invasive components: 1.6mm plus focal micro invasion .8mm. My invasive component is Er+70%+2, PR+10%+2, HER2+(3+), Bcl-2-, Ki-67 30%, p53+ (3+). My FISH results: HER2/CEP-17: 5.83, HER2 signal count:19.53, CEP-17 signal count:3.35. I have been told by 3 radiologist to do 50 g of radiation over 5 weeks. 3 MO's have said no chemo with 5 years tamoxifen. 2 MO's have said based the aggressive component of HER2+ the size is of invasive cancer is not as significant as the biology of the invasive cancer (triple positive) and they would recommend TCH chemo with a year of herceptin. Getting 3 more MO options in the coming week. The OMs that reccomended chemo feel very strongly that there is a good chance, even with neg nodes, that the HER+ has gotten into my blood stream and a reoccurance in the next year or 2 would be fatal. Taking TCH and herceptin puts me at a 1-1500 risk of development leukemia 10-15 years post chemo. On a side not I am super healthy, mom of two small boys and breast fed both. Having a really hard time sorting out the right decision regarding chemo!

hopeful123

There are a couple of topics in her2 positive threads about <5mm tumors. One is by dancetracer you might want to look at those.
<br />Good luck

GIOSGIRL

Hi Susan,

Your situation sounds similar to mine minus the children which I hope are learning to cope. How are you doing now? I loved how you too deliberated and weighed your options. I have recently been diagnosed and although Stage 1a it's grade 3 and HER2+ so they are suggesting the "Full Monty" if you will - Chemo - Herceptin & Radiation followed up with 5 years of Tamoxifen. I am 49 and otherwise very healthy. Did the cold caps work? any supplement or dietary suggestions? I really would love to bypass the chemo and just do try the Herceptin and Radiation. The idea of Tamoxifen also seems like such a frightening thought - it seems so unfair to us as still youthful women to have our bodies just 'shut-down" internally and by a pill! 

Thank you for any feedback or insight which you feel might help me with my descion. 

Lori 

SpecialK

giosgirl - the poster you are addressing has not posted in a long time so may not see this - I would recommend that you post in a forum that matches your diagnosis, that is active, so you can get the feedback you are asking for.  Based on your post you might try "triple positive"  or some threads in the Her2+ forum.  I have linked the triple positive thread, and also the TCH thread, for you:

http://community.breastcancer.org/forum/80/topic/764183?page=622#idx_18656

http://community.breastcancer.org/forum/69/topic/578284?page=537#idx_16084

There are many of us on these threads who can answer/comment on your questions.

Poke

Giogirl: I was Stage 1a, Grade 3, ER/PR/HER2+ and had the same recommendations, and I sought advice from three doctors who all said the same thing. It's the HER2+ that tips the recommendations because it's considered aggressive. Hope this helps. You can get through this.

paloaltomom

Hi Giosgirl -- I haven't checked this board for a while so this reply might be a bit late for you, since you are likely already in the middle of treatment. I am now 2+ years post diagnosis, 1.5 yrs post Taxol, and almost one year post Herceptin. I am happy to report that all follow-up mammograms, MRIs, and physical exams have been negative.



I tolerated the 12 weeks of TH and 9 months of Herceptin very well. The only notable downsides for me were that I lost my body hair and that my skin was super dry. I had a hair trim maybe a month after the Taxol was over and I had to grin when the hairdresser complimented me on how healthy my hair was.



I kept up a steady regimen of calcium, glutamine, and I can't remember what else right now. I did also faithfully chronicle the entire experience from diagnosis to chemo and beyond, with details on cold caps, supplements, side effects, etc. So if you or anyone else might find it useful, I'd be happy to share the URL. I even took weekly photos of my face and hair throughout chemo ... Objectively, I'd have to say there's no discernible difference in my hair bur you can see me age over the few short months!



Of note, my MUGA scans were all very high throughout (mid-70s, if I'm recalling correctly), but I'd have to say that my #1 coping technique throughout chemo and surgery was exercise. I never skipped a day. I was even walking the halls of the hospital less than a day after my TRAM reconstruction. It boosted my energy, eliminated any GI issues, helped me avoid the need for painkillers, and more. The most important thing that exercise did though was to keep my spirits up. If I started to feel blue, I put on my walking shoes and headed outdoors. Worked every time.



Best,

Susan