Bother--wont be saying goodbye after all.

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Just had the appointment for the results after my WLE

well i walked in and said—do i need more surgery—answer no
—do I need more treatment----answer yes

turns out that the original cancer they found was what they thought it was, but when they got the sample in the lab they found just about every different type of cancer cell you could find in it. Invasive/non invasive. Ductal/lobular All very small though, they said there was such a cocktail there that they could not grade it. One of the invasive ones had a score of 8. but it was not at all HER responsive.

they had lost the pathology report so he was working from his notes, perhaps that is why he was more interested in his handiwork than the results.

I do not need chemotherapy, so that is good. I do need radiotherapy and hormone therapy for 5 years- Silly man kept telling me how lucky i was not to be having chemo. I nearly said “next you will be telling me how lucky i am to be alive” but i bit my tongue

when i talked about the band though they were saying that the physical activity and feel good factor would really help me cope with the radiotherapy and that there was no reason why i should stop, just plan my days to get lots of rest before rehearsals and gigs. Also do as much exercise and get as fit as i can before the treatment starts. I hope the hormone therapy is no biggy at my age,will try and find out more.

The wound has healed really well and i am now cleared to do anything that i feel like doing, so off to get a bodice gripper bra so i don’t jiggle around and will start bashing hell out of the drums and booking gigs

Was a bit of a shock and also a bit of a shock when he said when treatment is finished you are not cancer free, it can pop up in your body anywhere anytime. mmmm was that a get out clause or a very real possibility.

so off to scare myself silly researching these treatments.(not google though) Expect lots of silly questions on the forum as I start to get my head round things. Might give the help line ring though about this recurrance comment.

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HI OAL

I was shocked when I heard about reoccurence as well, I assumed if they’d got it all out and I had all these treatments that would be it.

That was the biggest shock of all to be honest, going to make me paranoid as hell for the next 5 years!

If they can’t grade it then how can they not be doing chemo? I don’t understand that…

K xxx

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Yes this was one of the worst things that I found in the first few months - the progression of “its small, we will just whip it out, maybe rads” to path reports, for me node involvement so chemo, the realisation that treatment of some form will go on for years, and there are no guarantees beyond that. Its a lot to get your head around. Hopefully on your next meeting you willbe able to properly discuss your Path results, and maybe get the percentages applicable to your prognosis, which can help to put things in perspective - likely prognosis without further treament, and with (for me the full works was a no-brainer!).
Sorry you have to stay with us, but you know we will keep right on being here to help if possible!

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OAL sorry to hear your news. The score of 8 you mention with be hormone receptor score. 8 out of 8 is good as means they can give extra treatment to help prevent it coming back or going elsewhere. If you were high risk of it spreading they would bs giving Chemo. But from what you said it sounds very small but it’s better to have treatment to minimise the risk of reference. The hormone side effects are similar to menopausal symptoms so things like hot flushes and vaginal irritation and bone aches but not everybody gets symptoms.

I’d also ask to get a copy of your path report if the doc can’t provide the answers. There should be a copy on his computer if not in your notes. Your GP may even be able to access it.

Recurrence is still not common the majority of bc patients won’t get a recurrence but they are at a higher risk than somebody who has never had cancer or DCIS. Statistically the smaller andrew aggressive the cancer the less likely it is to recur or progress than a larger more aggressive type or if you have positive nodes. But even people with 10 nodes may never get it again after their initial treatment and likewise occassionaly some tiny grade 1 cancer may pop up again in 25 years time.

They will be monitoring you more closely following bc treatment though to help detect any changes but it’s hard to be breast aware without being breast obsessive.

Love and hugs
Lulu xxx

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Ho OAL

Sorry you did not get more positive answers to your questions. Everybody with BC is different and each treatment is geared to the individual.

Glad that you can get back to the band, I expect you will hbe able to drum some of your frustration out.

Love Annexx

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i asked about getting a copy of my report. He said it should be up on the computer by the time i had my planning meeting with the radiologist and i could ask questons then. He looked a bit annoyed when i said i wanted a printed copy. when i said how do i get one he said he had no idea. Perhaps he was not cross with me but frustrated that he did not have a copy. All the time i was waiting to go in I could hear phone calls being made about my files being missing and why was there nothing on the system about me.

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Sorry to hear your news, OaL, but honestly, chemo’s just the worst sh*t ever and you are doing well to avoid it.

Good luck for future treatments.

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OAL, I know it’s not what you wanted to hear, but in there are some excellent results. Let me spin things for you in a slightly more positive light.

Clear margins - WOOHOO!!! No more surgery, terrific!

No chemo - flipping brilliant! Don’t worry about them not being able to grade it because of the hotch-potch that was in there. I was told by my onc that because my tumour was small (13mm), even though it was Grade 3 he would have ummed and ahhed about giving me chemo, and the only reason I definitely had to have chemo was because I’m HER2+.

HER2 negative - absolutely fantastic! They tend to be a stubborn little buggers and like to come back, so that’s a fab result. It also means that you don’t have to have Herceptin and you don’t have to have chemo by default. Terrif.

Score of 8 - Wonderful! As Lulu says, that’s to do with hormones, so either oestrogen or progesterone. Having hormone-receptive means they can give you more stuff to help prevent recurrences, rather than the triple-negative ladies who don’t have the additional safety net of Tamoxifen (for pre-menopausal people) or aromatase inhibitors (for post-menopausal people).

Radiotherapy - fry any little blighters the surgery didn’t get rid of! Radiotherapy is an extremely powerful treatment, and while it’s tedious to have to go, a month is a darn sight more doable than some of the other treatments you’ve managed to avoid.

Wound has healed well - great stuff!

Take a look at the publications section of this site, and also at the Macmillan site, they have some very good and clear info on there.

The recurrence comment is what we’ve all been saying - that there is no such thing as an “all clear” with breast cancer, because those of us who’ve had it once have a much higher possibility of getting another primary, and of it deciding to come back elsewhere. The best any of us can hope for is No Evidence of Disease, or NED. If you are able to get any statistics from your surgeon that might make you feel a lot better.

And write to him requesting a copy of your path report so you have something to refer to when doing your research.

Finally, have a great big hug to help you get over the shock of it all.

CM
x

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I know this isn’t the best news but it really could have been a lot worse. No chemo, no more surgery has to be good news. Get you hands on the path report so you can keep a copy.

I think most of us with treated primaries can never be sure if they will reoccur.

Good luck with the radiotherapy.

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I’ve not heard anything about pathology, by choice. I’d already started chemo before I asked the size and I know that it won’t respond to other drugs after, so guess i’m TN. I know it was 5.5cm so not a little thing, and it’s much smaller now.
Somtimes I wish i’d have asked, but in my eyes they know best so I let them get on with it.

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Hi OAL

Like CM I think that ,if you have to have BC, and none of us want it, your results are good.

The recurrence thing, well it could come back but it also could NOT come back, we’re all in the same boat with that one but I agree it is a shock when you are first told.

Back to the drums, brilliant. You can bash until your heart’s content, and back gigging.

I did 25 sessions of RT. Found it tiring, I don’t know whether it was the treatment or travelling to hospital every day. It does tend to take over your life. I had to pace myself with gigs. We only play weekend gigs so I used to make sure that I rested as much as possible when I wasn’t gigging or RTing.

Just a tip start slapping the E45 or similar cream on the ares to be RT’d. If you start now your skin will be in good condition and will cope better.

Love to you

Jan xxxx

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Sorry on the AREA to be RT’d not your rear portion!!!

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It’s not nice knowing that there’s no such thing as “all clear” from BC and that it could pop up again, but hopefully with time we get used to living with that and can push it to the back of our minds.

As most of the others have said, I’d ask for a copy of the histology report. Some consultants are better than others at giving you a copy - some do so automatically, some wait to be asked, and a few are really difficult about it.

Enjoy the drumming!

Sarah x

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hello OAL, what a bummer, i’m so sorry about your result. There’s nothing i can add to the superb advice from Lulu and CM, but wanted to send love and hugs. as one post said, that realisation that there is no complete and forever ‘cure’ is gut wrenching and takes some thinking through - lots of us here to support you through that, hon. as far as rads is concerned, that is very doable and again, lots of support for you. this forum is so good - practical advice, considered info and emotional support, all with cyberhugs!
i got a print off of my path report from my bcn, it should be on the system as part of your records - a quick call to your bcn could fettle that.
take care of yourself, thinking of you
mon xxx

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i think the problem is that they have lost it. It was not on the system this morning.

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My notes were always missing. Last appt with oncy they had no record that i’d been admitted for three days during that cycle.
Sometimes I find missing notes a god send. I like having my head in the sand at times.

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I phoned my breast consultant’s secretary to get a copy of the histology report. She had to get the OK from the consultant for that so it took a few days, but I did get it. I’ve heard of other people having to threaten all sorts of things so they can get a copy of their report - but luckily that seems to be a small minority.

And then again, some, like elttiks, prefer not to know. I’m in the want to know EVERYTHING camp!

Sarah x

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Hi OAL I was just on your other thread re: Rads, sorry you didn’t get what was originally thought, I agree with the others about the path report, this does happen they do get lost in the system sometimes but it will turn up, call your BN to get it chased up so that it is defo ready for you when you have your planning, you have a right as with all medical records to have a copy nowadays.

I would also ask about the grading ? was this the surgeon you see today ? you should have a meeting with an oncologist before rads start he will definately know more about the grade. I see a plastic surgeon when I had my results he just realed off the facts to me but couldn’t advice about treatment as he said only what was discussed in the meeting (thats the oncologists department) not the surgeons, any worries you have will be made clear when you see the onc.

I think Sarah made a good point about the path report some just dont want all the facts & take in mind there is stuff on there that might worry you as its how they put it & code things (scientific stuff)I got my knickers in a twist when I 1st read mine but my onc soon put my mind at ease.

hugs
Mekala x

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there is a realy good bcc book on how to read a path report so i was raring to see it.

Grading-- i specifically asked about this and he said there were so many different types of cancer cells–invasive/non invasive, lobular/ductal etc that they could not give me a grade. It was the surgeon that spoke to me and they had had their meeting the day before.

I think he was probably frustrated cos the report had been lost and perhaps he did not know the answers to my questions and instead of saying, sorry I did not make a note of that, he waffled. Anyway it cannot be a high grade if they are not talking about chemo i suppose.

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Hi hun yeah could be that he didn’t have it infront of him, but your onc will be more in the picture when you see him. Mine was grade 3 I thought id need chemo but onc said nope not in my case … so much depends not just grade / stage / margin/ nodes but other factors that my onc explained to me, seems yours was tiny too which in itself is a VERY good thing & only doing rads because you got few different ones there. Write all the questions down on your note pad for your onc next week I think your going to feel much better once you’ve seen him/her

Big hugs
Mekala x