calling all t1A (> 1 mm but < 6 mm) sisters who are HER2+
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Welcome, Robin1234!
Yes, it can be confusing, but the good news is that you won't have rads, there is no known systemic spread, and you DO have options.
I was 49 when diagnosed and am 3 1/2 years out. 5cm DCIS and 2 IDC areas - 1 was 1.6mm and the other was 3mm, although it could have all been one 4.6 as 3mm were removed in a MRI biopsy. Mine were 90% reactive to E, minimally reactive to P, and highly amplified for HER2/neu with negative nodes and no signs of spread. I opted for tamoxifen only as both the first and second opinions agreed, and the first was provided at a teaching hospital that conferenced my case. I sometimes wonder if I should have had Herceptin, but I think tamoxifen is probably highly effective against the 90% estrogen reactivity. I also take IP6 as a supplement to boost its effects, as there is some research to support that.
My advice would be to go and get that second opinion and perhaps a third, weigh the options, and then proceed. Many women on this particular thread have chosen to do chemo and Herceptin. Less of us have chosen no treatment after surgery, tamoxifen only, rads only, or Herceptin only, but I think there are likely more women who've done those things amongst the general population of women who've had similar happen to them, if that makes sense.
All the best!
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Hi Rosamond and Tresjoli2 thank you for responding. I had my 2nd opinion on February 27th and she said the samething but she also told me that that I'm in a good place with or without treatment that there is not to many women like us out there and we are in a gray area. She is worried about chemo with me because I have IBS and after my bilateral mastectomy surgery I got c diff because I was on antibiotics for 2 weeks and that's what caused it. It's all cleared up now. I asked her if she was i. My place what would she do and she said honestly I thought about went I was going over your report and I don't know what I would do if I was in your place and she your in a good place now. So I'm so confused. I do want to treat the hormones I do know that for sure.
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Robin, the truth is you MO doesn't know what to do. My MO conferred with 5 other MO's. 2 said dochemo, 2 said don't do chemo, and one said there was no way to know. It's just super rare to catch cancer so early. So I think the decision becomes a personal one. What do you feel in your heart is right for you. Because there is no wrong answer here. Hugs
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Thank you ladies I'm glad we have a place we can talk, share, and help one another but wow this is a roller coaster. My first MO I went to see this was my experience with him: he give me 3 options and told me what he recommend that taxol + herceptin + tamoxifen so I said him if I had some time to think about it and he said yes you have time. The next day his nurse called and setting up all kinds of appts tests and chemorrhoids treatments I said to her wait he told me I had time to think about want i wanted to do and it's not even been 24 hours! She said we just like it get things started you can always cancel appointment and they went ahead and got pre approved from my insurance. I just didn't know what to make of this so that is why I went for a 2nd opinion and she was so understanding explained everything to me wrote things down answered all my questions and concerns and told me that my out come we go no matter what I decided to go home and think about it. So my 1st MO know I had a 2nd opinion and wanted me to call him and let know know what she said well I called him on the 28th of February and talked to him about what she said and wow he just got not so nice and said your taking to long to make a decision you need to make one and I thought to my self wow i just had the 2nd opinion yesterday. Then I told him her concerns and he said that why we do testing will you at least do that and get your port in at least?? I said yes I have no problem with that and never said I did. Then he said will you at least get the herceptin come on you need to get moving your running out of time!! Wow i think I've made him mad by getting a 2nd opinion or something. All I know is hot off that phone not feel good about anything and was crying. It was like I went to that 2nd opinion and she made me feel good and I took 2 steps forwards then talking to him a took 3 steps backwards. So I'm been looking at thesea boards and want to reach out to all you wonderful beautiful brave ladies. Oh and he as supposed to have his nurse call me with testing and appts here it is Friday and no one has ever called me yet. I did call my 2nd opinion office yesterday also to see if I can see herelated for treatments. I've know I want to treat the hormones and like to treat the her2 also but scared of chemo and what it will do to my ibs and the c diff I just got over 3 weeks ago. God bless all you very brave ladies.
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Hi Robin. I was in your shoes 6 months ago. After weighing my options I chose Tamoxifen without Taxol or Herceptin.
For me it came down to not wanting to put my body through the chemo for such a low chance at recurrence in my case. As of right now I am feeling great, have few side effects from Tamoxifen and have gotten back to (almost) normal life.
It is a very personal decision in this gray area. I would question why doctor #1 is pushing the chemo on you so vigorously. I would not be comfortable with that and would go to a different doctor if I chose chemo/herceptin. My gut feeling tells me he is concerned with his pocketbook more than your health.
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I think another possible explanation for some sense of urgency may be because adjuvant chemotherapy and/or HER2-targeted therapy (if elected) should be commenced in a timely manner, following diagnosis and surgery. In this case, Robin1234 was diagnosed on November 7, 2016, had surgery on December 27, 2016, and today is March 6, 2017.
Robin1234: If you are not sure by when you need to reach a decision, please contact each of the medical oncologists that you consulted with to inquire. Be sure to remind them of your dates of diagnosis and surgery, and ask for their advice regarding by what date you should commence such treatment if you decide to elect it, as well as what steps or advance appointments would be needed before then to ensure reasonably timely commencement of treatment.
General Information re Time to Chemotherapy ("TTC") in the Adjuvant Setting:
There are various studies in this area. See for example:
Chavez-MacGregor (2016): "Delayed Initiation of Adjuvant Chemotherapy Among Patients With Breast Cancer"
http://jamanetwork.com/journals/jamaoncology/article-abstract/2474437
They concluded: "Given the results of our analysis, we would suggest that all breast cancer patients that are candidates for adjuvant chemotherapy should receive this treatment within 91 days of surgery or 120 days from diagnosis. Administration of chemotherapy within this time frame is feasible in clinical practice under most clinical scenarios, and as medical oncologists, we should make every effort not to delay the initiation of adjuvant chemotherapy."
I do not know how this guidance would be applied in the individual case, and expert advice should be obtained.
Most studies in this area are retrospective and have various limitations. In addition, the results of various studies in this area are not consistent with each other in all aspects, and there are some important differences between sub-groups (e.g., triple-negative). Thus, regarding time to chemotherapy, patients should always seek current, case-specific expert professional advice, to ensure the complete body of evidence, including the most recent and reliable data that is applicable to their particular situation and diagnosis, is considered.
Patients experiencing larger delays should not assume any window has closed and decline treatment, but should instead seek case-specific expert advice regarding initiation of treatment / the potential impact of delay.
BarredOwl
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Thank you Joyandpiece I was thinking the samething. Hi Barredowl My 2nd opinion I just had February 27th and she told me I had 12 weeks after surgery but my first MO said at first he would like to start treatment before 6 months?? But then I called him letting him know what the 2nd MO said he said you know you have to start treatment before 12 weeks after your surgery right. I said I do now because the 2nd MO just told me that!! And my nurse navigator and fiance heard him say that too So going to see the 2nd MO Wednesday to get something started. I pray it's not to late to do anything because I know they have to do blood work and heart echo and port.
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Checking in
9 years out today. Very small HER2+ 1.2 mm. No Chemo no Herceptin, No hormones, Bilateral Mastectomy
...Back then I asked for Herceptin alone- which was unheard of & it kind of made my 2 Oncos think outside of the box...Unfortunately it was unheard of...So insurance wouldnt have covered any of it. I was told it would cost me $140,000...I found out exactly 2 months after my DX that I had a hole in my heart (a PFO) that had caused a mini stroke 10 years before And would again 6 months later- before I had it repaired. In hindsight my Ejection Factor was already 50...So I couldnt/wouldnt have done it anyway
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Congratulations Dejaboo!
BarredOwl
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Hi Robin1234:
I agree it would be best to start sooner, if treatment is elected. In your appointment on Wednesday, remind them of your dates of diagnosis and surgery, so that they can prioritize your appointments as possible / appropriate.
Best,
BarredOwl
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Whatever you choose, moving forward with that choice should bring you some peace, Robin1234.
CONGRATULATIONS DEJABOO!
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Thanks BarredOwl & Rosamond!
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Dejaboo - huge congratulations!!! 9 years - AWESOME!!!
Robin yes I would agree with the others; obviously if you are going to do treatment, the sooner, the better.
I was late starting my chemo (6 months post BMX), but this was because I was misdiagnosed. I would have preferred to do it sooner if I had known.
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Hi Ladies it's been a long few weeks but I went to my 2nd MO and she said no chemo or Herceptin to just do tamoxifen and Zoladex so I went with her she wanted me to do. Next day she called me say she has weekly meeting and she brough my case up and her 2 colleagues told her that they would of had me do taxol and herceptin. So i called her back and she is out of the country until this Monday to see what is she thinking now. I went back to my 1 MO and got my bloodwork done and echocardiogram and everything is normal, port in this Wednesday and Taxol and herceptin next friday. Went to chemo class today and scared. I'm not a persin that takes meds at all so all this pre meds and the meds they are going to give me is causes me anxiety. Can you guys tell me your experience. Thank you
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Hi robin! Are you doing the weekly herceptin and taxol? If so, be assured it is a relatively easy protocol to tolerate. Ask for a numbing cream for your port to apply prior to your infusion. I had no reaction to taxol, so the next 11 infusions, I only got half of the steroid dose and did well. The steroid can cause loss of sleep and make you a little hyper, plus skin issues like pimple breakouts. You can ask for the reduced dose. I also iced my hands and feet during taxol to prevent neuropathy, plus took glutamine powder 30 grams daily and vitamin b6 100mg daily. I had no neuropathy or nail issues. I continued to exercise everyday (lots of women can work throughout the treatment), eat lots of protein and drink plenty of water / fluids. I really had no other side effects except for hair loss and my red and white blood counts went down, but never to level that required treatment. I finished my 12 weeks, had 33 radiation treatments, and get herceptin every 3 weeks now. I played tennis 3 days this week, and feel great. Best of luck to you, and let us know how you're doing.
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Hi Germangirl16 I'm having weekly taxol with herceptin x12 and after that herceptin every 3 weeks for 9 months. I ask them if I could ice because that's what I read on here that works and they looked at me like I was crazy or something and said you do need to do that. Then I asked about if I can take any keep of vitamins like B and they said I would have to ask my MO. They have me on my first and second infusion taking steroids the night before. Thank house so much for the helpful info Germangirl16 I so appreciate.
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Hi Robin:
I am hoping you tolerate your treatment well!
By the way, I think the tumor size information for the IDC is incorrect in your current profile. Wasn't your tumor 2.5 mm? (i.e., less than 1 cm)
BarredOwl
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Robin1234, wishing you all the best with your treatment! It seems to me that most of the women who have posted about Taxol said it wasn't too harsh. Hang in there!
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Hi BarredOwl thank you I didn't notice that keep until you said something ( I had 2 IDC one 2.5mm and 1.5mm) Imy praying I do well too. I seen 2 MOs and now they both are recommending chemo/herceptin and then tamoxifen. With both MOs it went to a tumor broad. I'm so nervous because I don't like taking meds. After my surgery the healing went great but they was giving me 1000MG tylenol and can to find out it was making flushed but was fine with 500mg and them I was take antibiotics for 2 weeks and then got c diff then do cotton put me on another antibiotics for 14 days and could only take it for 8 days and get had to any side affects so my doctor told me to stop it and I've been fine. I don't seen to do well with meds so that why I'm worried. Thank you dancetrancer I've heard people say that as well.
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C-diff sucks...I got it, too, when on antibiotics after surgery. Scary stuff! Glad you recovered ok from that. I am sensitive to meds, too. Listen - you do what ya gotta do. Put your head down and push through! Sending good vibes your way!
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Thank you dancetrancer I'm glad glad someone understand what I'm going through and yes Cdiff is not fun and some nasty stuff. I'm happy you pushed through this and doing great. I'm so happy to have the support of all you wonderful brave beautiful ladies. Thank you for the uplifting.
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I'm 5+ years out and feel fantastic. You can do this, and there is a light at the end of the tunnel.
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congratulations dancetrancer and many many many more years!! Yes we are strong women and can do this 😊🤗💗
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I had bmx and hyster/oopher. Had intestinal abscess after hyster. C-Diff after many months of antibiotics.
Dx -First time 2007
Dx- second time 2017
I was told to do TCH /rads 6 weeks five days a week, herceptin 12 months every three weeks/ AI 10 years
Second opinion - told Taxol and herceptin weekly12 weeks, rads the same/ herceptin every three after TH completed/AI 5yrs
I went with second because I have been hospitalized several times for intestine after abscess. Taxotere is very hard on intestines so to avoid those complications I went with Taxol.
Mine current infir is below but to sum it up
Triple positive high grade 3 IDC/ILC/DCIS/ADH all this in less than 1cm. I found a hard lump at the sternum area right boob. Residual tissue after mastectomies was where cancer grew.
ER + 98.8 PR + 78.8 ki-15% HER2+ high grade 3
Lymph nodes clear
Hope this helps.
Daniella
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Daniella, you have had a rough road. Recurrence after 10 yrs despite BMX. CFS. At least you caught it and nodes were clear. Wishing you well with your treatment.
I'll say it again, CFS.
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We all have it hard! Yes, CFS!!!
Thank you for your support and post
Daniell
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Thank you danix5 I'm so sorry you got it back but I glad you caught it early. Are you in treatment now and if so how is it going? I know my MO told me I can do herceptin without chemo but no one knows if it works because they never been a study on it.
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I know before I found out I have BC I was having horrible panic attacks and anxiety. They was so bad i was house bond. I never had it that bad in my life. Does anyone else have anxiety and if so does treatment make it worse? I've been doing great with my anxiety up until 2 days ago but it just a little bit not bad.
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Dani- I am sorry to see you back here
I remember you from when I was 1st DX0 -
I'm a two time cancer survivor. Mine came back after 9 years NED. First time 3 mm and Her2+ and ER/PR-. Second time 4 mm and triple positive. First time no chemo or Herceptin. This time Arimidex and Herceptin without chemo. Will keep you informed!
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