Stage 1, grade 1 and pre-menopausal
Comments
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Hi Im in a panic. Feel like a mosquito bite type of tiny bump on my left underarm a little distance from where my lymphnodes were removed. Though my lymph nodes turned out all negative Im worried this might be a reccurence? Going to call my surgeon tom. Since my Onc is out of town till tuesday.... What does a recurrence look like? Any idea? Im barely 2 months past my first lumpectomy and about to start my radiation next week due to my onco score of 13. Help pls if anyone has an idea on this...
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Hi Lav. It seems very unlikely that you would have a recurrence so soon after your surgery with your type of tumor and profile. I'm glad you're having it checked out, but this bump could be many things unrelated to cancer. I had a MX, but also had various bumps and my surgeon and onc were confident that it was swelling and/or scar tissue. Your nodes might be inflamed from the surgery too. Try not to panic (I know, easier said than done)! Fingers crossed that you have positive news soon so you are able to relax. Hugs!
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Thank you Nan54. I normally would not panic? Its just after being diagnosed with bc that I guess Im being paranoid. I took an anti inflamatory last night and I feel its gone down a bit. Still there though but dont feel it as big as yesterday. Your right its probably something else. I have an appnt soon will show it just the same but if it reduces in size then it shouldnt be what I think it is right? Thank you for your reaasurance. It helps alot with everyone here knowing more than I do since Im a new bee.
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Lav, even if it is a lymph node, there are lots and lots of benign things that can make them swell. I am jumpy too so I get it--but I hope you can stay calm until you can get it checked out.
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Just finished "The Big Squeeze" basically in one sitting. I'd love to pass it on to someone. Just PM me your address and I'll pop it in the mail to you. It is a nice library bound hard cover copy. Maybe when you're done with it you can pass it on.0
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farmerlucy.... I am so glad you enjoyed reading Dr. Reynolds, The Big Squeeze. That is so nice of you to offer sharing your copy. I hope other sisters read the book as well. I emailed his wife, Marilyn Reynolds and told her how much I admired her husband. She , too, was glad to hear from me. If you google her name, you can find an active email for her. I hope other sisters will contact her too after reading his book...0 -
I will email her. Thanks for the tip. This weekend I also skimmed Bathsheba's Breast (too many dust mites in the used book!), and I'm about a third of the way through "The E of M". I've always been, well, a voracious reader
, but I haven't been able to concentrate on any books since my dx (1 1/2 years). I figured I may as well try to read about cancer. Et Voila! The block is lifted. Thanks so much for all the great information. 0 -
Lav hope you received good news regarding your recent concerns above ...I am keeping my fingers crossed for you .0 -
hi ladies-- it's been a while since I've been on this thread, and may have asked this before, but for those that went through OS, did you get all the side effects that they warned about? How long did you stay on it? I'm 33 and going to get my first Lupron shot today and have started freaking myself out. I'm going to do this until either the SOFT results come out and say otherwise or if I can't bear it anymore.0 -
Hi Cuetang. I'm 37 and have gotten 3 monthly shots of zoladex so far (due for the 4th later this week). I am also on tamoxifen and, honestly, it hasn't been that bad. I get some hot flashes - mostly at night which can affect my sleep, but not awful. I have the dryness, but also not unbearable. I have noticed that I'm a bit more emotionally unstable than before! Tears come more freely and I tend to have what I'm guessing are occasional panic attacks. But, honestly, that could be part of the PTSD from my totally unexpected diagnosis a few months ago. So, my point is that - for me - I have been pleasantly surprised by just how tolerable the treatment is. My doc says at least 3 years on the zoladex, but I might choose to have my ovaries out in that time-frame. We are watching my bone density and cholesterol, both of which are very good right now. Good luck with your Lupron shot!0 -
Thank you Nan54 for sharing your experience! Had my shot today, we will see how this goes!0 -
Cuetang, I had a waterfall of a period before going into menopause from the shot. They warned me it could be heavy, but holy heck! I've still got the hot flash issue--they are not too bad, but interrupts my sleep at night.0 -
Hi Pooh612 by the time I got to the oncologist it dissapeared by itself. Thank God! I wouldnt have normally panicked but after reading about others having to go thru it all over again I panicked. I start radiation on Monday and feeling nervous and anxious about it. Cant even sleep well at night. Ive got butterflies in my stomach. My rad. Onc says not to use anything else but aquafor. I had such a hard time here in Panama actually finding wireless cotton bras. I asked a friend who had recently gone thru chemo n rad and she just used a regular wireless bra. My breast is so sensitive post surgery as it is. Please pray for me and if any of you have special tips for me do let me know please. Loves to all of you. You have helped me and taught me more about what im going thru than my docs not that theyre bad. But they just seems to say its not that bad u wont need anything else. Thanks once again.0 -
Lav, some people breeze through radiation--I was one of those. Pleasantly surprised. I know for some, the machine itself is intimidating, but I didn't find it so. Although I'm fair-skinned, I did not really burn, just got kind of pink. I'm saying this only to let you know that rads isn't automatically bad. There's a big range of possibilities, so you might as well try to hope for the best. Easier said than done, I know. It is wonderful news that your little underarm lump slunk away on its own!0 -
Lav, I'm echoing what Runfree said. Radiation was a breeze for me. One of my favorite parts of my treatment. (Yes I said favorite!) because the technicians were so pleasant, always had a smile for me. Every day I imagined the radiation killing off any remaining cancer. It feels a little funny the first couple of times, laying on a table, topless, alone. At my hospital, they played popular music through a speaker, so I tried to focus on that, humming or singing along. Only 1-2 songs and the radiation is over. You will get through this!! :-D0 -
Hi Cuetang
I just had my 5th zoladex shot and like Nan54 its not so bad .
Small side effects kicked in at week 7 and they are basically just
mild hot flushes that last about 60 seconds . I get one or 2 during the day and maybe 3 at night. The nighttime ones are a little worse ...but manageable ....i just flip the covers off and i cool down in no time and can manage to fall back asleep ....I was terrified at first but now i am okay with the whole idea....no personality changes either but yes ...low libido....I too am waiting for the results of the SOFT trial .....!!!
I go to the gym and work out 5 days out of seven and i find that it really helps ...i think sweating it out for half and hour reduces the amout of hotflashes and i stay away from sugar.
LAV ...glad things went well!!! ...0 -
saw my MO today... Hasn't heard anything regarding SOFT trial. However, he added, since the chance of recurrence is very low for this group, he didn't expect anything earth shattering this early... Hmmm...never thought of that before....but it sure makes sense....0 -
VR ~ my onc seemed to have the same attitude towards it.
I have a question that I'm having a hard time finding the answer to... In honor of MBC awareness day, I've heard several times people saying that 30% of BC will metastasize to Stage IV. But isn't that misleading? Wouldn't it depend upon what stage you started with BC? 30% must be an average between people starting with stage 1 and stage 3? I can just imagine people (unnecessarily) freaking out with a stage 1 diagnosis.0 -
hi ladies
im neither grade 1 or or stage 1 but I am pre-meno and it was suggested by another member that I post Lupron questions here since many of you ladies are on these shots
I just stopped them with the ok from my second opinion onc at DF in boston. She said tamox alone is enough for me. I was her2 so I did do all the chemo/Herceptin etc.
my question is there a possibility that the 9 months of Lupron sufficiently fried my ovaries and maybe my periods wont come back?
also - when are the SOFT trial results being released ?0 -
SusansGarden - interesting question. I was told my my docs that my risk of mets was no more than about 2%, given my diagnosis (small DCIS with small micro-invasion), so I would assume that the odds change as your stage gets higher, with the 30% being an overall average, but don't know for sure.0 -
I have a question too that might tie into rozem's question ..Why is there no credibility being given to the Zipp trial or the ABC Ovarian ablation trials... that seem to confirm that the combination of Ovarian suppression and Tamox is the same as tamoxifen alone ........
I am on both for 5 months now and like Rozem would like to just stop the OS and continue with just Tamoxifen. We all seem to be waiting for the SOFT trial results but how come no one mentions the Zipp trial results or the ABS Ovarian Supression results .0 -
SusansGarden, thank you for posting this question. I've seen that statistic myself and always found it scary. I even watched a video on YouTube by a doctor who said, "You have to realize that 30% of breast cancer cases will have metastases." HUH??? That sounds impossibly high to me. The overall mortality rate from BC is not nearly that high, I don't think, so why would the mets rate be that high? I know some people live a long time with mets and die of something else, but not enough people to justify the 30% mets figure.
While we're on the subject of scary stuff in the media, I read an opinion piece by Cate Edwards (daughter of John Edwards and Elizabeth Edwards) last week advocating for more funding to research advanced breast cancer, by which she meant Stages III and IV. She said that advanced cancer is always terminal and never goes into remission. DOUBLE HUH??? That's just flat wrong, particularly for Stage III. I know it was offered in the spirit of trying to increase support for research, having of course lost her mother to the disease. But she's now put something out there that is untrue and alarming, which makes her less of a friend to the BC community than I think she means to be. Here is the piece I'm talking about.
http://www.cnn.com/2013/10/08/opinion/edwards-breast-cancer/index.html?iref=allsearch0 -
Yikes. I would not be wanting to read that article if I was just diagnosed Stage III. Like you said, I'm all for more awareness and education about the cold hard and scary facts of BC. But they need to be accurate!!
I'm still searching the web (with no luck) regarding this 30% statistic.
This one was as close as I got. Click Here, It basically says 1 in 5 (20%) of early stagers will recur within 10 years AFTER adjuvant therapy.
HOWEVER, it goes on to say that it does vary by stage.
I still would like to see more info on where people are getting this 30% of early stagers will metastasize. Even SGK is publishing that number now.0 -
Rosem the closer you are to natural menopause the more likely the Lupron into tip you into permanent menopause but there is a lot of variability and often the periods do return after stopping Lupron0 -
Susan don't panic, you are right those stats are very, very general, they don't apply to individuals, that's what the adjuvant online is for -to give individualised statistics on recurrence rates and for most early stage BC long term survival is much better than 30%! Stage 1 usually less than 10% recurrence after 5 years of tamoxifen. Did your onc never do the adjuvant online stats for you?
It is true that the more advanced the cancer is at presentation the greater the risk of recurrence, but it's also true that the stage III sisters can still be cured and early stagers can recur.
I tortured myself just after diagnosis with these stats but soon realised that the stats are always 10 years out of date because they are usually 10 year survival statistics and treatments have improved so much in that time so we can all rest assured that the stats are likely to exaggerate recurrence risk. Equally survival with stage IV is also often much longer than the stats suggest because of the progress with treatment of advanced disease.
I hope that answers your question concern
Hugs
Annice0 -
VR thank-you for info- does that mean that we will not get any early info on SOFT this year??
Annicex0 -
Thanks Annicemd. Yes, I do know my stats are much lower. I was just concerned for other new stage 1 patients having unwarranted anxiety. It seems this 30% stat is going around a lot right now. It got some controversial notice when posted on the Susan G Komen facebook page. The soundbite is misleading because I'm seeing it several places just saying "early stagers" without clarifying that "early stage" includes stage 1 through stage III. I don't need my mother seeing it on the news and misinterpreting it in my case...she worries enough already about me for the fact that I even had cancer at all.
Interesting, because it's been usually the opposite for so long. With all the pink washing you would often hear that "women don't die of bc anymore" or "catching it early saves lives". Which can also be misleading and/or downright false.
Sigh. I guess there isn't really a happy medium when it comes to the media.0 -
Annice...once again, I read that collection of the preliminary data was to begin in Sept of 2013. The researchers also hoped that the results would be available in early 2014. If the data was collected quickly, there was some hope that the results MIGHT be available at the December San Antonio meeting....this was mentioned in an email to me from one of the collection researchers.
Stay tuned...0 -
Annice, thank you very much for that point about how obsolete survival and recurrence statistics have to be. I hadn't thought of that. SusansGarden, exactly--first the media swings toward too sunny, then too alarmist. No happy medium in the media--very well put.0 -
anniecmed - im almost 45 so I don't think Im near natural menopause yet - I am hoping my periods don't come back. The Lupron was awful for me and if I had a consensus from my oncs to stay on it I would suffer through but 2/3 tell me tamox alone is fine. I know it depends on the overall treatment plan (I had a lot of chemo) aswell
I was hoping the preliminary results would be in for the end of the year...VR...I guess not?
pooh - can you post links to those studies0
