Good to hear the nurses are good, sending big hugs xx
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Anyone had macromat in one out of two sentinel lymphâs and had radiation , letrozole and CDk therapy ? But not chemo ? My nerves are v scared as itâs lobular and I feel like they wonât be able to check for spread . Iâve been offered 15 rounds of radiation over axillary clearance . Thanks for any advice . R x
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I had positive macro spread in 1 out of 2 lymph nodes, I had a small 5mm IDC and I had 2.5mm in the lymph node. As I am HER2 + , chemo was recommended, 3 x E, 12 x Paclitaxel weekly. I think the HER2+ is what swung it to chemotherapy, if you are HER2-, I donât think they tend to do chemo for only 1 positive node. Radiation is supposed to be as good as full aux clearance as is more often recommended due to side effects of the operation. You can post your question to the nurses on this forum, they may have more information. Good luck, Jane.
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Thankyou and glad is all good for you now . I had a 6mm macro in one out of two lymphâs and itâs lobular . In my breast they found 7mm lobular , 4 mm ductal and 1mm tubular after telling me I had DCIS . Eveything they said was unlikely has happened . They have recommended radiation , letrozole ( which I started a week ago ) and cdk something . Not sure about chemo yet as am post meno . I am in such a state because the wait is terrible and I keep thinking itâs spread or will spread . It will be 11 weeks since initial lumpectomy if I have to wait until 17th for radiotherapy . My nerves are in tatters . I wish they could be more reassuring . Thanks for your response it makes me feel reassured that there are others who have gone the radiotherapy route rather than axillary clearance when they have macros x
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Hello, I havenât actually had the radiation yet, as I am still going through the second lot of chemo, but I have looked into it, just to make sure that if there were any lingering cells in the lymph nodes left, they would be killed off and they will 
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Thankyou for that , That is good to hear and I hope you are doing well and that your chemo is going smoothly⊠my mind keeps thinking what if itâs already spread .. the whole experience is such a shock and a massive adjustment for us x
Chemo is a bit up and down, I keep having issues and having to skip weeks⊠As you say, this is all such a massive shock, something you never expect to have to deal with. I too was told I only had DCIS, as it was high grade, I had a lumpectomy to remove it, then they found the IDC in amongst it, then I had to have a SLNB, just to check, but told it almost certainly wouldnât show cancer , but it did, in 1 out of the 2 lymphs. Unfortunately it is a very common occurence, the cancer hides in DCIS. The lymph nodes do catch the cancer cells though, so in almost all cases, it hasnât spread beyond ( it is quite rare to have extra spread on early diagnosis). I think all of us do worry though, even though the odds are firmly in our favour, we still think âwhat ifâ. I am post menopausal as well, so after chemo and radiotherapy I will be on Zoledronic acid infusions, every 3 or 6 months. You may get offered these, they help protect against bone cancer and some secondary cancers. If you donât have them, it may be because you are not HER2+, which is more likely to come back or spread. Cancer treatment has come on in leaps and bounds over the last few years, so our chances of it all being caught, are so much better nowadays. You will have times of worry though, we all do, but I am certain that todays treatments are the best Jane x
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You make a lot of sense and thatâs so similar to what happened to me re the having to have the sentinel node biopsy itâs all v unpleasant but you are right about the different potions they can give us 
I hope that the rest of your chemo goes swiftly and you can resume some kind of normality again ⊠well a new normal xx it really helps speaking to others because sometimes you feel like you are alone in this
Yes you are right, it is a new normal, but we will get there and this will eventually be in the back of our minds, not at the front, always wanting to have attention. You are not alone, everyone on here has the same worries, but we also laugh too. Normal life hasnât ended, it is just having a little detour x
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You are so right . Thankyou for that you have the right attitude and it is very inspiring x
Ho @springer77, hope you are doing well. I just wanted to resch out to ask how you got on with treatment, and whether you had a full auxillary clearance or radiotherapy to the armpit in the end?
My experience was similar to yours (and at the same time it turns out). All my nodes were showing normal on ultrasound, MRI, CT scan. SLNB done during lumpectomy surgery, and 3 out of 3 nodes positive & macrometasis. It was a huge shock. Advised chemo, followed by auxillary clearance and then radiotherapy.
Iâm currently undergoing chemo, but thankfully due to finish soon.
I am questioning why auxillary clearance when it has greater risk of lympodema, and why not radiotherapy to armpit instead. Apparently trials are showing the long term outcome of both is similar.
I wondered how you got on and what you decided in the end? Thank you & best wishes.
Hi..
Can I ask how you are finding chemo.
I have a boderline score and waiting to see if I have to have it. I am so very scared
Hey. Sorry for delay. I had full axillary clearance and am now having chemo (almost finished) and then radiotherapy will follow. The axillary clearance was fine and no lasting effects so far, just a slightly numb armpit. The worst thing about it was having the drain for a few days, couldnât wait to get rid of it! X
Hey Sammy. Itâs been tough, I wonât lie, but there is a lot of respite between infusions. I had 4 AC and unfortunately got hospitalised with sepsis for the first and the last one. But that isnât very common. Iâm about to have my last docetaxel and that has been slightly easier than AC. AC was every 2 weeks whereas docetaxel is every 3 weeks so by week 2 Iâm feeling almost normal. Iâve worked all the way through (from home) with just a day off for each chemo appointment and a few days off when I had the sepsis. Hopefully you wonât have to have it but if you do, youâll be fine. There are loads of drugs to help with side effects. I lost all my hair but itâs been quite liberating tbh, Iâve loved wearing some gorgeous wigs! X
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Thank you for your reply.
I am just very anxious. Trying not to google and wait to see what they say when I get the appointment.
Just havent coped very well as had to wait 6 weeks after full node clearance so had to go on diazapam for a month.
Trying to be positive been preparing for them to say chemo. Hence Im trying to reach out. Thank yoi
Hello, I have completed 3 x EC chemo, I am allergic to many, many things and although I was initially fine after completing dose one, later on in the evening, I took one of the anti sickness tablets and my blood pressure crashed, heart rate went odd and I felt terrible. I was taken to hospital in an ambulance and kept for a few hours under observation, but picked right up. Next day I was fine, took other tablets, but as soon as I took that other one, the exact same thing happened, but I just rode it out. I had my dose of EC reduced to 75% for the next 2 doses, just in case it also had partly caused a problem. I think it would be highly unlikely anything like this happened to you I was sitting eating pizza, feeling fine, up until taking the tablet! During EC, I was only sick the once, through all 3 doses ( other than the night at the hospital), I felt nausea sometimes, but the anti sickness tablets usually keep it in check. You need to drink a lot, then you feel better. EC is usually harder, as you can get tired as well. I am now on Paclitaxel and have 9 out of the 12 rounds. This is much easier as apart from a bit of tiredness ( oh and I have developed a rash, which can be itchy - this can be quite common) I feel almost completely normal, most of the time. This may be because the weekly Paclitaxel you get a smaller dose, than when you have it every 3 weeks, so I would highlly recommend asking for the weekly dose. I have looked at masses of medical studies and long term outcomes, so I could see the benefit of various treatments. In some of the studies I looked at, the borderline patients who did not end up having chemo, often ended up with cancers coming back, in higher numbers than those patients that had had the chemo, so I was adament at the very beginning, that whatever happened, I wanted chemo! I would prefer to put up with this for 6 months and worry far less in the future. My surgeon told me I did not need chemo and it was unlikely that this would trouble me at all in the future ( meaning no recurrences), however, I pushed for Oncotype scoring and it was high, so I was referred to the Oncologist. Almost his first words to me were âI canât guarantee it isnât anywhere elseâ. Something I had already assumed for myself. So I asked for a CT scan, got one and it was clear, but if you have a few cancer cells floating around in your blood or anywhere, a CT scan cannot pick these up, as they are too small. Luckily the oncologist thought chemo was definately best as I had had cancer in 1 out of the 2 lymph nodes removed and he wrote a letter to my surgeon saying that that âchanged everythingâ and therfore chemo was required. Obviously if you are being given a choice, they may feel there is no chance of any stray cells, but having read so many of the medical studies and there is also a lady on this forum, who was told a few years ago she was low risk and dinât need chemo and is now here on this forum as it came back and she has to have chemo. She was lucky as it came back as a local recurrence and could still be treated. I donât want to frighten you, but I feel you may worry much more in the future if you donât have the chemo. Yes you will get side effects, some people have hardly any, others have many more, but they can always give you things to help. I will be having radio therapy shortly, after finishing the chemo and then various other drugs. Breast cancer is more likely to come back in the first 1 or 2 years, so I have asked them to throw the kitchen sink at it! My thinking is, if I have everything they can offer me and it still comes back, then I canât regret anything and that is life. If I turned down any treatment and it came back, I would struggle to cope with thinking that it may not have happened if I had accepted x,y,z treatment, but that is just me. If you have chemo, you will still have a life, you will still laugh and have more good days than bad and it only goes on for so many weeks. Please come back to me with any more questions, any questions are fine On the very first day of chemo, I shed a little tear as the cannula was put in, I had got myself so worked up, but now I wander in happily, laughing and joking with the nurses and enjoy chatting to the other patients and never worry or feel frightened. Good luck with your decision, let me know what you decide and your treatment plan, only if you want to of course. Sending you a big hug, Jane x
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Thank you so much Jane.
Chemo has really scared me and been on diazapam for a month.
I just thought being grade 1 I would be fine.
But the more I think about it the more I dont want regrets. Im due back to work in two weeks after 3 months off. Long story 3 surguries. Just want a bit of normality before whatever happens happens.
It would be nice to keep in touch if you didnt mind x
You are very welcome. I ended up with 2 surgeries. I am grade 2. I think if you go for the most treatment, you will feel more in charge of the situation and gain strength from doing something positive. I know they often talk about the increased benefits being 1 or 2%, but as I said before, having looked at many long term studies, I question that! I am pleased you are getting a break though and if you can try and think of chemo as a really good, positive thing to do, as I do, the fear will probably start to go ( well I hope so). I would rather go to hospital for a session of chemo, than go to the dentist anyday! Yes of course weâll keep in touch, you can message me anytime and ask anything. Good luck on your return to work, I work from home as I am an artist, so I am lucky and have just carried on working. Speak soon, Jane x
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Hi @springer77, thank you for the reply, and glad to hear that auxillary clearance has proved all fine. I have a feeling I will have to have it done too, although Iâm worried about lympodema and shoulder stiffness, and coding.. I had coding sfter the SLNB, and I found that bad enough. Iâll speak to my team about it. My Oncology nurse just advised to do whatever the MDT advise, and not think about too much.
Hope youâve coped okay through chemo. Sounds like we are going through a very similar experience sadly. Yep I had a drain after the lumpectomy, and it was annoying more than anything else. Take care & best wishes x
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Hi @sammy75, I can understand your anxiety, as I felt the same, last thing I wanted. Iâm now nearly due to finish, and no itâs not been pleasant at times. I had 4xEC and then weekly Paclitaxel, which is 12 weeks, but Iâm only having 8, as fell ill for a bit. With EC, feeling nauseous is a big thing, but there are many different anti-sickness tablets these days. Plus ginger buscuits, sweets, tea all help. I found the first 7 days rough, feeling more normal by day 10, and then having about 10 days of normality, which was bliss before the next cycle starts. So it isnât a case of feeling ill all the time. With weekly Paclitaxel, thereâs been hardly any nausea but I did suffer muscle pain and breathlessness, so much so that the dosage has been reduced. The Oncologist can adjust the dosage if needed.
Iâve been lucky, with no vomiting, & bloods fine each time. Overall Iâve only had mild toxicity issues.
I did cold cap during EC, but still lost a lot of hair, and it was proving tough then. I stopped it then, and shaved any remnants. Itâs starts to grow again during treatment tbh.
Feel free to keep in touch should you have any questions, need advice, tips. Happy to help. Best wishes with your decision. Weâre all going through similar, so not alone. Sending lots of love xx
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