HER2 Support Group Forums - View Single Post

JessicaV · 08-28-2015, 07:56 AM

Hi, Here in Australia, most of us get a bone scan and a CT scan of torso before any surgery to help them get the staging right. I had no node involvement and my IDC was 2.2cm. They do these tests to see if there are any visible tumors in liver, lungs, bone, but generally can only measure those over .5 to 1cm. So they generally cannot know for sure, but they can see if the disease is systemic rather than just in the breast, in which case they may provide different treatment options. But she's got it at a really good time because the treatment options are so good these days.

A problem with HER2+ cancers is that they are aggressive and fast growing and prone to shed cells even before surgery, that can spread through the body in an innocent form and find a suitable niche, and grow into new distant cancers. So the primary tumour has ofter become Grade 3 before it is diagnosed, (i.e. very aggressive and fast growing and prone to metastasise).

However, we are very lucky that some very clever scientists put their all into developing a way to effectively treat HER2+ cancers and stop them spreading and often(it seems)even to cure them, developing the range of treatments that began with Herceptin. And even if the cancer does metastasise, there are good ongoing treatments that often seem to allow a person to live out a full life despite having breast cancer as a chronic illness. My oncologist said to me that 10 years ago, without treatment after surgery, I had a 45%chance the cancer would be back within 5 years in a form that would almost certainly kill me. Now, with the TCH treatment, I have about 8% chance it will be back within 5 years, and then there is a good chance it will become a permanent fixture not a death sentence. So do not despair.

If she has any node involvement, even "micromets" I think they call it Stage 3. Be aware that whether or not her cancer is found to have entered the lymph system, and whether or not all the original tumour was completely removed by surgery, this is a cancer that does tend to seed and spread and to try to grow back elsewhere in the body, mostly within about 3-5 years. So this is why the chemo and radiotherapy are so very important: they will do a good job of mopping up any tiny mets that start before or during her treatment period, which is the time when the risk is probably highest. It is scary to live with this reality, of not knowing for sure whether you still have any seed cancers somewhere that may start up. Learning to monitor vigilantly without living a life of fear is a skill. Learning to leave death and dying until it is really happening, which could be at the end of a very long life, is hard to do after confronting the truth of having a potentially fatal disease.

So value her and love her, and know she has a pretty good chance of having a good long life if she is able to find the courage to make it through chemo and radiotherapy and hormone treatment to control the ER+ environment. Which I am sure she will.
What relation is she to you?
best wishes
Jessica

08-28-2015, 07:56 AM	#11
JessicaV Senior Member Join Date: Apr 2014 Posts: 206	Re: Relative with Breast cancer Hi, Here in Australia, most of us get a bone scan and a CT scan of torso before any surgery to help them get the staging right. I had no node involvement and my IDC was 2.2cm. They do these tests to see if there are any visible tumors in liver, lungs, bone, but generally can only measure those over .5 to 1cm. So they generally cannot know for sure, but they can see if the disease is systemic rather than just in the breast, in which case they may provide different treatment options. But she's got it at a really good time because the treatment options are so good these days. A problem with HER2+ cancers is that they are aggressive and fast growing and prone to shed cells even before surgery, that can spread through the body in an innocent form and find a suitable niche, and grow into new distant cancers. So the primary tumour has ofter become Grade 3 before it is diagnosed, (i.e. very aggressive and fast growing and prone to metastasise). However, we are very lucky that some very clever scientists put their all into developing a way to effectively treat HER2+ cancers and stop them spreading and often(it seems)even to cure them, developing the range of treatments that began with Herceptin. And even if the cancer does metastasise, there are good ongoing treatments that often seem to allow a person to live out a full life despite having breast cancer as a chronic illness. My oncologist said to me that 10 years ago, without treatment after surgery, I had a 45%chance the cancer would be back within 5 years in a form that would almost certainly kill me. Now, with the TCH treatment, I have about 8% chance it will be back within 5 years, and then there is a good chance it will become a permanent fixture not a death sentence. So do not despair. If she has any node involvement, even "micromets" I think they call it Stage 3. Be aware that whether or not her cancer is found to have entered the lymph system, and whether or not all the original tumour was completely removed by surgery, this is a cancer that does tend to seed and spread and to try to grow back elsewhere in the body, mostly within about 3-5 years. So this is why the chemo and radiotherapy are so very important: they will do a good job of mopping up any tiny mets that start before or during her treatment period, which is the time when the risk is probably highest. It is scary to live with this reality, of not knowing for sure whether you still have any seed cancers somewhere that may start up. Learning to monitor vigilantly without living a life of fear is a skill. Learning to leave death and dying until it is really happening, which could be at the end of a very long life, is hard to do after confronting the truth of having a potentially fatal disease. So value her and love her, and know she has a pretty good chance of having a good long life if she is able to find the courage to make it through chemo and radiotherapy and hormone treatment to control the ER+ environment. Which I am sure she will. What relation is she to you? best wishes Jessica __________________ 1997-2004 many cysts, many MG & U/S: polycystic breasts. Sept 2013 found lump,Cyst?? forgot lump. Dec 2013 GP check, Referred for U/S, MG,FNA. 7 Jan 2014 Radiology: Radiologist turned screen away from me. When asked she said "Not a cyst, very suspicious.See your GP asa results avail." Cancelled my psych clients for the week. 8 Jan 14 GP: 2.2cm IDC in 6cm DCIS field. FNA=malignant cells. Referred to Surgeon. Cancelled my psych clients for the month. 13 Jan 14 Surgeon said L mastectomy not lumpectomy, offered neoadjunctive trial, agreed adjunctive chemo after surgery a good choice for me. Booked Body scan and bone scan for staging (both fine) Surgery for16 Jan, 16 Jan 14 Surgeon also agreed in preop meeting to also remove 6cm fatty cyst in job lot. Good job done. 19 Jan 14 discharged home with 1 drain. 22 Jan 14 drain partly pulled out overnight, serious seroma (600 ml reducing removed every 2 days for a month) Serious staph infection because nurse said wait 3 days for yr surgeon appointment. 26Jan 14 pathology: 2.2cm Grade 3(3,3,2)ER-, PgR-, HER2+2 so to be confirmed by Sish test. Node negative. No vascular or lymphatic involvement. No metastases in scans. 30 Jan 14 HER2+ high amplification, 13 gene copies per cell. 21st Feb 14 Began 3wkly TCH adjuvant treatment at The Mount Hospital Perth, with 3monthly MUGA heart tests +Oncologist or Surgeon full physical check-up. Cancelled my psych clients for 6 months. Feb 14 First MUGA test: 71%, First C15.3 test: 20 7th March 14 began Neulasta self-applied injections 24hrs after each TCH treatment. Bonepain helped by spa, heatpacks and Claritin, reflux/indigestion helped by Somac. July 14 completed docetaxol and carboplatin, ongoing herceptin to 12 months. Severe cognitive deficit/fatigue after 1pm daily. Sept 14 Second MUGA test: 69% Cancelled my psych clients for 2014 Dec 14 Third MUGA test: 70% Second C15.3 test : 20 Cognitive fatigue delays return to work. March 2015 Tachycardia pulse 168, night in hospital. Cardiologist says no heart disease, ALIVE ECG attachment for my mobile phone now regular monitoring. July 2015 Worktrial, up to 8hrs per wk. Fatigue ongoing Aug 2015 Heart good, no evidence of cancer, just Fatigue. May 2019 Melanoma 1.5cm Stage 1 by right collarbone(was present as large freckle in 2014 and cut through by breast surgeon to remove fatty cyst at same time as mastectomy.) Melanoma removed leaving scar from shoulder to breastbone. In hospital twice for IV antibiotics. Told catagorically this could not be BC mets. Dec 2019 Still NED, still fatigue in late afternoon, but have my brain back in the early mornings. So most days I watch the sunrise and hear the birds morning chorus in my bush backyard and am glad to be alive and to be me still.