Thank you so much.
Looking at my last letter it seems it spread out my lymph nodes that no one has told me
Just have to wait I guess xx
Hi
Its the NPI test that they did and my score is 3.84 which falls in moderate.
No one explained this to me
Hi, I just looked up NPI test and the scores go from 2 to 6.9, which means if I was offered chemo with a score of 3.84, I would absolutely, definately, be wanting to have it. As you had extra spread outside the lymph nodes at the beginning, I would have thought it would be the best option, but then I do not have medical knowledge. I think your chances of disease free survival over 10 years, would go up rather a lot with chemo thrown in the mix. Have they actually offered you a choice of chemo or not, I mean, do they think you are still borderline for qualifying for chemo? I know you are HER2 negative and those cancers usually grow slower than the HER2 positive that I have, but with your exact set of circumstances, I would be wanting chemo. When do you see your oncologist to discuss chemo?
Hi.
Thank you for reply I havent had a date sent through yet but called Taylor one of tbe BCN and she explained the test they did. Classed as boderline as so close to the āgoodā group!!. 0.38.
Ive gone into full meltdown now shouldnt have googled survival rates.
Thank you for support, how did you keep calm and make thr choice
Oh I think you should ignore the published survival rates - these were done over 10 years, so you think how much progress has been made with new drugs and treatments in this time, so almost as soon as they publish survival rates, they are out of date! That is how I stay calm, I know that treatments are improving all the time, especially with targetted treatments and even though I think there is a good chance I may get a recurrence ( due to being HER2+ ), I also think treatments will have come on in leaps and bounds. If you have already looked up survival rates, then you are already starting to get into fighting mode 
therefore you will feel stronger about making the decision to accept more treatment. I was told that IF my cancer in my lymph node had been 0.5mm smaller, then I would have been classed as node negative, BUT it wasnāt 0.5mm smaller, so I am node positive. Being classed as āclose toā the good group, isnāt quite the same as being in the good group is it? Get as much information as you can, on your type of tumour and everything else and the more knowledge you have, the better, informed decisions and choices you will be able to make. x
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Thank you so much.
I know both my tumors were grade 1 er and pr both 8 and her2 nevative. Both carcinoma invasive which i believe is slow growing also DCIS. 2 oit of the 14 nodes
I really would like to stay in contact as every one needs a friend and I dont really have any. My husband is being such a huge support
I am trying to get my head around it without scaring myself too much x
Hi @sammy75, if there was extracapsular spread identified on your pathology report, then I dont understand why chemo is just an option. Something to discuss with them.
My report said not identified for extracapsular spread, but I had a high NPI at 4.78. The Predict tool also gave a chemo benefit of 5/6%. So basically chemo was highly recommended for me.
If you are borderline, and really not sure about chemo you can ask if you are eligible for CDK4/6 inhibitors, which is like a chemo drug, but with less side effects, taken for 2 years. If you are hormone positive then you should be getting hormone therapy anyway at some point x
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Hi @pg92 . I called my BCN today and she said that that this isnt on the new letter they are sending out.
Trying to come with terms its going to be chemo. I really appreciate you replying x
Of course we can stay in touch and be friends I am pleased you have such a supportive husband, as do I. I do think your overall prognosis will be very good, as you have grade 1 tumours, so even though it reached your lymph nodes. On this forum, there are many women who had breast cancer 10, 15, 20 years ago, with it in lymph nodes, who have never had any further problems. Chemo ādisablesā the cancer cells and stops them dividing, my oncologist said, but the radio therapy just completely kills them off. So chemo is really in case there are stray cells floating around your body somewhere, something that is almost impossible to discount for certain. There is a quote that is often referred to on this forum, made by an oncologist, who had said ā If you give me a year of your life, I will give you back yoursā , meaning, have all the treatment and then you should be able to go and live your life. Chemo doesnāt take a year, you may only need the one type, I had to have 2 types, EC, which was 3 lots, spaced out by 3 weeks a time and then a 3 week break and now 12 x Paclitaxel, which is weekly, so it will be around 5 months, but that is for both lots. I think because I have asked for as much treatment as possible, I donāt really think about having cancer, hardly at all. I just plod on with the treatment, knowing I am doing everything I can to beat it and knowing that as it was caught early, as was yours, the odds of surviving it are extremely high. You may want to look at some of Dr Liz Oāriordanās Youtube videos, she was a breast cancer surgeon, who got breast cancer herself and has now had it 3 times ( each time was a local recurrence), but she is still here and on a particular drug, to stop getting metastisis. So it just shows, anyone, even those with particular knowledge of breast cancer, can still get it and beat it! x
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I really do appreciate your replies and support.
Did you say you are towards the end of your treatmemt (sorry if ive already asked)
You seem so strong and together. I am just falling apart
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Aww no worries. Feel free to get in touch should you require any advice to deal with chemo side effects. Youāll get through it!
Iām about to finish chemo, and trying to get my head around the next stage, so Iām a bit all over the place too. They advised auxillary clearance as I had 3/3 positive lymph nodes. But im so worried about long term effects such as lympodema, pain and stiff shoulder that ideally Iād prefer radiotherapy to the armpit. But like @bellbert has said maybe I should be throwing everything at it to make sure. I know treatments these days are better than what they were x
I had full node clearance and 4 weeks later have full arm movement. No pain and fine
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I have 3 more Paclitaxel weekly chemo sessions to go and then I will be having radio therapy. I have Phesgo injections in my leg,every 3 weeks, due to being HER2+. I will also be on acid infusions every 3 months, for 3 years I think and I will take anything else they have on offer! In response to @pg92 , there are a lot of studies that have shown that radiotherapy has the same overall results as full node clearance, BUT I am not sure if that is in all cases, or not. Usually drs are keen to steer you away from full node clearance unless it is absolutely necessary, due to possible future complications, so if they are recommending surgery above radiotherapy, I would ask why. If the answer comes back that they are worried that they may miss some cells in your armpit, as the targetted beams are quite small, then you would know that it was worth the risk of surgery, to be certain that no cancer cells would be left behind.
Ah thatās good to hear! Thanks for sharing, gives me confidence. Iām writing down questions to ask the medical team. Nervous because it took a while for my arm to settle after the SLNB, and cording was awful. Even though I gained full arm movement about 8 weeks later, I sometimes feel some stiffness in that arm x
Thank you @bellbert. I am writing down questions to ask, as I feel Iām a bit on the borderline for surgery or radiotherapy.
I did put my questions into AI with my particular case, & it spat out that the trials done to compare auxillary clearance with radiotherapy were on women with only 1 or 2 positive nodes. It said when itās 3 or more nodes, then surgery is usually preferred.
But I will ask the questions. It may be that Iām only eligible for CDK 4/6 if 4 or more positive nodes are involved, and that is one of the reasons for clearance x
You sound like you have it covered, once you know the answers to your questions, then you will be able to make an informed decision. I too had cording and a seroma, after SLNB. I too also get a bit of stiffness in my shoulder, but I do do the exercises every day ( not the stretching up the wall ones, just the others). Good luck with your meeting. x
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Thank you @bellbert. Iāll see what they say. Still got a lot of treatment to go. Iām still doing arm movements daily too after the SLNB - its needed. Best wishes too with remaining treatment x
Good luck with your treatment too, we will get there in the end. Jane x
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Thank you all for sharing your stories. Iām going through something very similar. Was diagnosed with Grade 2 Invasive ductal carcinoma Er8/8 Pr8/8 Her 2: Low in the left and grade 1 in the right breast and have had two surgeries since. My lymph nodes were clear on all the scans but after the first surgery they found something on the sentinel lymph node on the left side after all (greater than 2mm) They only took out the one so I was recommended a full axillary removal because of my age (37, pre menopausal) and to see how many others are involved. Now waiting for the results of the tissue analysis, again. Iām feeling physically good after the surgery, some stiffness and pain in my armpit but comparable to muscle ache after a work out. No lymphoedema at this point but was told that can happen much later. Itās more mentally exhausting and Iām terrified that I may never get off the rollercoaster of bad news but reading your stories and take on chemotherapy is helping coming to terms with the fact that chemo is actually something that could put my mind at ease in the future. Wishing you a speedy recovery.
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Thank you for sharing @fj8 and glad to hear youāre doing okay post surgery. I am scared about long term effects of auxillary clearance, I canāt deny.
Yep chemo is a terrifying thought, and perhaps the thought is worse than the reality. But if you are due to have it, you will get through it. And knowing you are doing everything possible to beat it.
Best wishes with resultsā¦.. it may be a case if no more nodes effected, you can have an oncotype test to see what benefit chemo would provide, and this avoid it xx
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