Stage 1, grade 1 and pre-menopausal
Comments
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Della I have a low immunie system as well and started taking Astragalous. My WBC has finally come back into normal range and I did not have chemo, but did have rads. However in looking back at old blood work my WBC has always been low. I always fight fever blisters. I take Acyclovir 200mg twice a day, Mo also put me on acidophillous. I turned 50 this year so MO had me get a shingles vaccine. I really wanted to avoid shingles if at all possible. The vaccine is no guarantee but at least it is protection. so far so go no shingles. I have also had my uterus removed so I have no idea how my cycles are but my MO test my estradiol every time I go in. I have noticed that when hot flashes are not there my estrodial is low when I am having hot flashes it is high. I am seeing my MO at the end of this month so I will ask him about the DIM. He always has a strong opinion of things but always explains to me why.
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DellaHJ... Vitamin D...
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Thanks to both of you. I know that my immune system is compromised, according to my doctor; I guess by the surgery and radiation. But we were shopping for a new truck (long long story) and I got VERY stressed by it and I think that may have been the trigger.
I have Vit D; I will take more of it and regularly and order or buy some Astragalous. I was really hoping that I would have built it up with all the supplements. I guess I need to get into meditation to lessen the stress.
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DellaHJ I had a mild case of shingles about a year after diagnosis. I'm grateful that it wasn't a big deal - took an anti-viral for a week and had cream for mild skin irritation. I thought that once you got shingles, you would never get them again? Not sure what to add to boost immunity, though.
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Annice I take Vitamin D as well good to know. Do you have any knowledge on the Astagalus supplement?
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Hi sherry, it's a traditional Chinese medicine, claims to be a bit of a panacea ESP anti ageing, immune function and energy. I don't have any experience of using it but it can cause risk of bleeding but otherwise safe
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Hi, I'm new here, and having a hard time with my decision over chemo. I'm 49 and pre-monpausal. I was diagnosed mid-March and have had 2 surgeries since then (mastectomy late April). Tumour ~4cm, no nodes involved, grade 1 invasive cancer (mucinous, which tend to be larger) plus some DCIS. Highly ER/PR +ve and Her2 -ve. Oncologist leaned towards no chemotherapy, preferring to rely on tamoxifen, until she realised I had a family history of breast cancer. My tumour type is not typical of BRCA but I haven't been tested yet. I'm waiting for oncotype dx report but time is ticking and my head is spinning! What to do?!!
Any idea why the family history would influence the decision about chemo, given the biology/prognostics are ok?
One niggle - on the path report it indicates the initial lumpectomy showed 'evidence of LVI'. Eek. There was no evidence of it following mastectomy.
I am grateful to have had a grade 1 tumour, but it makes the decisions so much harder :-/.
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Mumofone, this is a toughie and of course your head is spinning. I don't really know about how the family history would help with the decision except what you can also think of, that you have a higher chance of feisty BC if you are BRCA +. The OncDX is a very good test. My guess is your OncDX score will not be sky high, since your tumor is grade 1. I had an anxious wait for my OncDX results too (and then my original MO made me feel badly about saying no to chemo even though my score was 13--subject of another thread here). I wish someone had told me that it's unlikely to have a low grade and a high score. My new MO told me yesterday that such a combination would have made her think there was a clerical error in sending the sample--that's how unlikely it is. However, your score could be in the middle range. If it's middle range, maybe you do the BRCA test next if you're still stuck? Time is not really ticking, I mean in terms of the biology of all this. You've had your MX, your nodes were clean, the grade was low. Have you had other tests, like a breast MRI? Was the LVI into the blood vessel or just in the wall? Your MO knew about the LVI, however definitive it was, and was still saying no chemo. Tamoxifen treats cancer elsewhere too. It's not really so time-sensitive except it's all scary, and you might want to get on with it if you know you're going to do chemo. But you do have time to make a careful decision. Good luck and keep us posted.
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My Dx score was 34 and I'm low grade, MO says grade has nothing to do with. It's based on the mass they removed and every individual cancer type is different.
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Hmm LorAll, that's puzzling then. My MO told me this just yesterday. She didn't say impossible, just unlikely, because the biology of the tumor as measured in the grading is the same mechanism that lies behind the score. AnniceMD, can you clarify?
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The Oncotype DX score is based on the genetics of the tumor. While it is uncommon for grade 3 tumors to have low Oncotype DX scores as well as uncommon for grade 1 tumors to have high Oncotype DX scores, it does happen. That is the whole idea behind the Oncotype DX Score...it is impossible to predict which ER positive tumor will have a high or low score. While one would EXPECT a low grade tumor to have a low score, there is no certainty.
Likewise, pathologists are highly subjective when screening tumors. My understanding is that there can be as much as 20% of disagreement among reports. The Oncotype DX score is more definitive.0 -
Thank you everyone, for your replies - it's as if my brain is stuck in a loop at the moment and I'm sure you all know that feeling :-/.
RunFree16, your post did a lot to calm me down, thank you. My husband has been telling me pretty much the same thing but it helps to hear it on here
.I understand that there will be exceptions to the general oncotype dx scores, which is why all the information needs to be taken together I guess. I need to be comfortable with any decision that is made and I am the kind of person who needs to know everything possible. I don't fully understand the LVI aspect of the tumour so am exploring that further, for instance.
The issue with timing is that my surgery started just over 10 weeks ago and it's 6 weeks since my mastectomy. I've read that chemo is best started within 12 weeks (of the initial surgery???). There have been delays with the oncotype testing --- I'm in the UK and the pathologist didn't send enough of a sample and the error wasn't recognised for over a week due to the weekend/Memorial Day and so on. So frustrating!
Anyway, I'll stop before I panic myself some more!
Actually, while I'm here, does anyone know anything about taking tamixifen prior to (or alongside) chemo? My doctor is pushing me to take tamoxifen while I wait but I have read it can raise the risk of blood clots, particularly in combination with chemo?
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Thanks VR you beat me to it
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Mumofone, it's usual to delay tamoxifen until after chemo if possible. When will you get your oncotype result? I am in Uk too, which centre is treating you? There is no need to panic, you have a slow growing tumour and the most important thing is to find the best management plan for you, no need to rush. Sorry you are here but you will find so much support and information on this site, best wishes,
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Annicemd, thank you for your reply. I am in the NW too
. I'm being treated at Macclesfield Hospital, while The Christie (where the oncologist is based) deals with the pathology samples.I'm uncomfortable taking tamoxifen before chemotherapy - it seems like it would be a lot for my body to cope with at once. I don't know why my GP was so insistant, except that I was obviously anxious to hurry everything along when I saw her recently. I haven't started taking the tam, infact I haven't even picked the prescription up...
I feel a little bit calmer today. Maybe it's because of the nice weather?!
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I know the Oncotype Dx is based on patients who are taking tamoxifen.
So for those patients for whom tamoxifen does little or nothing to prevent recurrence, is the Oncotype Dx result the same as if they were not taking any tamoxifen, since Oncotype Dx only is accurate if one is taking tamoxifen?
???
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AA... No. When the Oncotype DX score was developed, the researchers were able to draw comparisons with those patients' tumors who were diagnosed BEFORE Tamoxifen was discovered. So even if you have a very low Oncotype DX score, the score reflects how much benefit you would receive from Tamoxifen. However, for those with the lowest of low scores, the risks of taking the Tamoxifen might outweigh the benefit. With respect to exercise, diet and weight, no one knows for sure exactly how much benefit one might derive from keeping recurrence at bay. Interestingly, the patients who benefit the most from Tamoxifen are the ones with the higher Oncotype DX scores. Likewise, it is also true that patients with higher Oncotype DX scores benefit more from chemo. It is not uncommon for patients who require aggressive treatment to get their recurrence chances down to numbers similar to us Grade 1 Stage 1 patients who require less treatment. The bottom line is that the Oncotype DX score is very precise in determining whether or not Tamoxifen would be beneficial because they can make that comparison to those patients who went untreated.
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Thanks VR. The reason I ask is because my tumor was HER2+++ and as a patient on tamoxifen I might have done worse with tamoxifen.
A.A.
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I had my first Zometa infusion Thursday and it made me sick as a dog (I don't think I slept that night; next day was exhausted and nauseous). Was warned this could happen (experience flu-like symptoms). Slowly getting my appetite back. Anyone else have this experience? (Annice?)
I talked w/my onc about my sleep issues (due to hot flashes), and she rx Effexor, which is supposed to reduce hot flashes.
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Renee... I am sorry you had a rough time with your first Zometa infusion. So did I! I managed to do well with the rest of them! I wish you well.
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Why r u guys doing zometa infusions?
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Renee the first Zometa infusion I did really well with, my MO has me take claritin and pepcid for three days and drink lot's of water and no cafeine or alchohol. The first time I did really great with the water. The 2nd time I did not do so well with the water and I felt like I had the flu. Learned my lesson and I am very good with the water now. The more water you drink the faster it flushes through your system.
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Renee, sorry you had a rough ride, I had really bad side effects for about 3 days with first zometa but no ill effects with my subsequent infusions. This is very commonly found with zometa I.e. the side effects tend to occur on "priming" and then subside. Sherry your experience is unusual!
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Shari....According to one study lead by Michael Gnant, MD:
...there seems to be evidence that premenopausal patients, over age 40, who are doing ovarian suppression along with Zometa appear to do well.
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What about premenopausal women under 40?
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Thanks voracious I just want to do anything and everything... My onco said no to zometa... Very sad for that
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Shari,
There is some evidence that younger women who are very pre menopausal may not benefit from zometa so that might be why you were not offered it if you are in your 30s0 -
Thanks annice ... I am 31.. Maybe that's why and she mentioned something about osteocranosis.. Something like that.. Sometimes it rattles thei mind to see people treated so different medically.. It thanks that makes me feel a little better
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Renee - sorry to hear about your experience with your first Zometa infusion. I had my first infusion in January and did not have any side effects. My MO did not tell me to take anything prior (or even up my water intake), but I may at least make sure I'm well hydrated for my next one in July. I hope you're feeling better today!
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Ah Anice and I just thought the whole hydration thing was normal since infusion clinic really stressed that to me and when I did not I could tell.
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