HER2 Positive-anyone 10 years out?
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my post from 2 years ago. now I'm 14 years out!
Jun 5, 2017 03:58PM lkc wrote:
just back from my twelve year Onc visit, orig dx stage IIIC dx, 12 out. of 14 pos nodes, her 2pos. Lymph & vascular invasion, no clear surgical margins, Paget's of the nipple, blah , blah,blah. Really really sad faces and rotten prognosis...
I am well, living and laughing every day... Eternally grateful for the life I have.
Only advice.. Fight the beast with everything you have and live fearlessly
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lkc - Congratulations on 14 years! It is inspiring to read these posts.
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is anyone with her2 positive tumour after undergoing chemo and mastectomy avoided radiotherapy?
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hi threeTeens- in your treatment historic did not see radiotherapy. I em wondering if you could avoid that step. I am triple positive had chemo and bilateral Goldilocks mastectomy. I am wondering if there is chance for her2 positives avoid radiotherapy if nodes are negative ?
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In my experience, RADS is not needed if lymph nodes are negative and you had a mastectomy.
Remember, you do not *have* to have any treatment. You can decline or accept any treatment you choose. I made It VERY clear that I would not do radiation regardless of final pathology, my body my choice. My physicians were supportive if my choices.
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Hi Margun!
I was stage 2B with 1 positive node. I went to 3 radiation doctors for opinions. The 1st said I would have “1 foot in the grave” if I DIDNT do rads, the 2nd said either way he felt id be fine, and the 3rd was a world renowned specialist who advised me to NOT do rads! I chose NOT to and I am nearly 12 years out! Get opinions and then decide what’s best for you.
Something tells me you are gonna be just fine
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TracyZ- thanks for your answer. I hope it will be my case also. I have to take Herceptin and hormon pills as you did for sure. I heard already that hormon pills in particular have a lot of Se ( joint paint, Stiffness ..). I have still some occasional bone pain and toes numbness left from Taxol, so I would like avoid at least rads. I heard they are easier than chimo but can have long lasting Se
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Why not do rads? So easy and an extra measure of protection.
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One of my best friends was HER2 positive, and just celebrated her 13th year out last month (and is doing GREAT!).
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Denny, I had the same thought. After chemo, I found radiation to be quite doable, even though some of my left lung had to be radiated because the tumour was close to the chest wall.
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I think rads are easy for some, but not easy for everyone. I was happy to be able to avoid rads cause I've heard about possible SEs, such as heart damage. (A tech who did one of my echo-cardiograms told me that she sees women who develop heart damage from rads years afterwards. Of course this probably doesn't happen to most, but it can happen.)
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It's true radiation can have side effects. I was lucky to be able to have all but the last four "booster's treatments in the prone position which minimizes damage to the heart and lungs.
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hi Pipandor- in your treatment history you mentioned lumpectomy. I learned here that with her2 positive tumour rads are amust if you get lumpectomy but you have some chance to avoid them if you have mastectomy. All the treatments I am sure give some extra protection but docs weigh pros and cons to see What is the optimal solution.
Some people on this thread did not have rads because the doc advised them so. I guess you had rads because your doc advised so or you wanted to have them (despite your doc did not see significant improvement in lowering recurrence)to be on safe side?
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Hi Margun. That's right. My oncologist explained that the radiation would treat any remaining cancerous cells in the breast and I think that is the standard of care for most lumpectomies.
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I am glad that I had rads, even though I had a recurrence 10 years ago in my anterior mediastinal and hilar chest nodes. They could have been worse I guess. Both nodes were under my left radiated breast.
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I was very lucky and only had 19 rounds of radiation. It was very doable and I didn't have any skin problems. I was 10 years out in June.
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hi l’aviron- did you have lumpectomy or mastectomy
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My tumor was gone with chemo, the surgeon took a lot of tissue an nodes, he called it a partial mastectomy, and it all came out clear. I had 36 rounds of radiation. Check with your doctor, my cousin had a mastectomy and no radiation. I think it depends on your particular cancer and stage, each person is different and what each person chooses is different.
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Mistyeyes- was your cousin her2positive as we are? I had bilateral Goldilocks but I do not have path report (initial results show no lymph node involvement). I do whatever docs decide to do. I will never say no if docs decide that rads will improve survival rate but I do not insist to have rads due to fear if docs decide that it would be over treatment.
What kind of side effects you experienced with rads?
I am 5 weeks post taxol but still have occasional lower leg and arme bone/joint pain. What was your experience ? Is this continuing occasional pain is normal
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No, my cousin was not HER2+, she had the cancer gene, so she got double mastectomy and hysterectomy. Radiation was not too bad for me, it was like a sunburn, I used gobs and gobs of lotion and would wrap my breast at night with soft cloth. I was tired with it, but I was still tired from chemo and was still getting the Herceptin. I really didn't think about things too much when I was going through it all, I kinda just did day by day. I worked all through chemo and radiation, I did the radiation on my lunch break every day.
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Cowgirl - do you know why Arimidex was prescribed to you instead if Tamoxifen? Any side effects on Arimidex? What makes the decision on a type of the pill? Which one is more easy to handle. I heard a lot from f negative stories on these pills and soon I will be one of them
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Margun, I was prescribed Arimidex because I was post menopausal. Tamoxifin is prescribed for pre menopausal. More later tomorrow...
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I’m one Month into year 10. 4 positive lymph nodes. LVI invasion. Two of the four lymph nodes had visible cancer in them at surgery-not microscopic. I also had pagets.
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Cowgirl -any side effects with Arimidex
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Kathleen196 - Whoo Hoo!! 10 years. Thanks for posting, your amazing!
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I did have side effects starting about a month after beginning taking it. I had a lot of muscle, leg stuff. It could have been a coincidence that all that went away at the same time I cut sugar out of my diet. My mood has been better since I've been off. I'm very glad I'm off. Was on about 7.6 or 8 years and my onc stated that it was fine to go off then. I think my side effects would have been much more manageable if I had exercised and had really cleaned up my diet. I hope this helps.
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I was diagnosed in 1999 with ER-/PR- HER2+ (+2) when herceptin was just about coming out of clinical trials and it was not part of my treatment plan I had a lumpectomy, chemo, and radiation. I had a few benign biopsies over the next 13 years. In 2012, was diagnosed with DCIS and decided to have a bilateral mastectomy. I consider myself blessed and in January 2020,will celebrate 21 years since being diagnosed.
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I'm 10 years out and was just diagnosed with a recurrence. But I came on here to say that when it happened, my doctors were utterly shocked and kept saying how strange and unusual it was for me to get a recurrence this far out. So you know they just never see it!
In fact, the tumour was ignored (although very visible on my mastectomy site) for a year because nobody thought it could be cancer. My oncologist thinks they just didn't remove all the tissue the first time, and a bit of DCIS was left behind, which then went into shock from all the chemo and herceptin, and didn't wake up for years.
I'm now in light chemo (they have a lot more options on how to treat you if you get a local recurrence) and herceptin. My tumour is shrinking, and I feel fine. Speaking only for myself, I did feel it was less terrifying the second time around because I know what to expect. And 10 years later, so much has improved for the better in terms of cancer treatment. Doctors really have a lot of confidence they can shut down her2 cancer with all the different drugs available. Back then, it was just herceptin.
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Brooklyn, I'm sorry that you've had a recurrence.
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Brooklyn, so sorry you are facing this again, though glad you are finding the treatment bearable. My first diagnosis was much like yours so I was wondering. What chemo did you receive then and what are you receiving now?
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