Hi Fliss,

A very warm wlcome to our community, although I'm sorry to hear why you're here. I am glad to learn that your likelihood of recurrence doesn't warrant chemotherapy, but to discover that you are starting radiotherapy this week. How many sessions are you going to have?

How are you feeling after your lumpectomy - Any problems with your breasts or arms?

I have had 2 bouts of breast cancer in the past 9 years, but I am afraid that I cannot say why these tests have to go to America. Perhaps someone else on this site will be able to enlighten us both?

Do please keep in touch and let us know how you get on with your radiotherapy. This is a tough time, but it will be worth it in the end. We are always here for you.

Kind regards,

Jolamine xx

Hi Fliss52 and welcome to these forums. These were the first I came across when I was diagnosed last year in August and I found them tremendously helpful and reassuring. Those first weeks where everything is moving so fast and all the terminology is so confusing is very overwhelming.

Like you, I had lumpectomy and removal of 3 sentinel nodes and samples sent to California for the Oncotype DX test. My score was 18 so, like you, I avoided chemotherapy which was a huge relief. Radiotherapy wasn't that bad for me and I found I recovered really well.

The Oncotype DX test was developed by Genomics Healthcare in California, and they are the only people that perform the test I believe. They analyse 21 genes - 15 cancer genes and 6 of your genes as a reference, and using algorythms that have been validated on thousands of samples, they come up with a predictor of the likelihood of recurrence. The test is available across the world, but everybody sends their samples to California to be done, hence the 2 week wait. Their website tells you much more. I always click to say I'm a health professional, not a patient, at the initial screen as that gives you access to much more information www.oncotypeiq.com/.../oncotypedx-test

Best of luck with your radiotherapy. Use lots of creams to protect your skin (E45, Aloe vera) and you will hopefully get through it well. Best wishes.

I have just had a second lumpectomy, luckily the Hospital I am being treated at actually have the equipment to test lymph nodes whilst the operation is being carried out. My lymph nodes were clear, but no one warns you of the pain and discomfort from having these removed, my first operation was 26th April and I’m still suffering especially after doing exercises. I am now waiting for results and to find out if I will need a third operation or a mastectomy,  has anyone any helpful tips on how to cope with this?

Hi Tess,

A very warm welcome to our forum. I am so sorry to hear about the problems you are having requiring repeat surgeries. Do you know what type and grade of cancer you have? I am glad to hear that your lymph nodes were clear - this is always good news!

I had a lumpectomy 10 years ago and, a double mastectomy for a second bout the following year. I had 6 lymph nodes removed alongside my lumpectomy and I still have underarm pain to this day. Still, don't give up on your exercises. It is well worth trying to get as much movement back as you can manage.

I am sorry to hear that you are now waiting to see if you need further surgery. Can I ask why you have had to have so many ops - is this because your margins haven't been clear enough? If this is the case, you are as well to follow your surgeon's advice. I changed to a different surgeon for my second bout, but both my surgeon and I  suspect that the cancer recurred, because I didn't have a wide enough margin removed first time. The pathology result stated this, but my first surgeon assured me that he had noticed this at the time of surgery and had removed an additional sliver. It is certainly much easier to get it all sorted first time around instead of having to start all over again at a later stage, even though it might not seem like this to you at the moment.

Waiting for results is always a scary time as there are so many unknowns. The best thing you can do is to keep yourself busy and stay away from the internet. This will only scare you further. You don't have to rely on a frenzy of housework to keep you busy. You can also follow pleasanter pursuits.

Have you got a date for your results yet? Don't forget to let us know how you get on. We are always here for you.

Kind regards,

Jolamine xx

Hi Jolamine, luckily a mammogram etc showed I have stage 2 breast cancer 10cm I think.

My problem seems to be the surgeon didn’t see there was another tumour behind the one he took out, so the margins must have shown this, unfortunately during the second operation my skin tore so the surgeon is not sure he has removed enough tissue.

Hi Tess, sorry to hear you've had to have two operations. Hopefully you are clear now. I had three surgeries last year in order to get clear margins. The first two were 5 weeks apart, and the 3rd was 13 days later. None of the operations were difficult to recover from, although I was extremely tired after the third op, probably from all the general anaesthetics, and I was back to work within a week of each surgery. I did the exercises we are given rigorously, took lots of short walks, and slept whenever I felt tired.  It's an anxious wait, though, to find out if you are finished with surgery or there's more. People on here are very supportive and most have been through this anxious waiting for results. All the best, hope you hear good news.

Hi Tess,

You've not been very lucky with your surgeries, have you? I sincerely hope that your results will be good and that you won't need any further surgery. However, if you do need a mastectomy, please don't worry about it unecessarily. I have had a lumpectomy and a double mastectomy and I actually found the double mastectomy easier to undergo than the lumpectomy.

I hope that you don't have much longer to wait for your results and, that they can indicate that you don't need any further surgery.

Kind regards,

Jolamine xx

Hi Fliss,

I have just discovered the answer to your question. Apparently the test was invented in California and, this is the only centre in the world that carries it out. This is why it takes a little longer to get the results back.

How have you coped with your radiotherapy? I hope that all is going well for you.

Kind regards,

Jolamine xx

I think I coped pretty well apart from the tiredness. The site of the node removal is quite tender with needle-like shooting pains every so often. Finding a bit difficult to get the whole experience out of my mind though. Is anyone else experiencing this?

Hi Fliss,

I'm glad to hear that you have coped well with your radiotherapy, apart from the tiredness.

Getting the experience out of your mind is difficult. It will get easier with the passage of time. That having been said, your life will be changed and you will always be affected by a cancer diagnosis, for the rest of your days.

Kind regards,

Jolamine xx