Stage 2 Sisters Club
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I see my MO and BS twice a year (each). My MO said I can go down to once yearly now and continue to see the BS twice a year. This will be for 5 years total. If I stay on Femara past the 5 years, I'll probably continue to see the MO until he takes me off of it.
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I thought I'd be done after radiation and here I am a year and a half later.
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What is the purpose of seeing the BS twice per year?
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Tralph: I know, that's what I thought but the RO said nope I won't be seeing the MO again. My Mo told me after the first visit I wouldn't be seeing her again unless I was being a bad patient. I see her nurse practitioner in January for a follow-up to the Letrozole but after that she will transfer the prescription over to my GP for refills. I do see the RO again in May after the mammogram. The RO said I will need a mammo every six months for the first three years then after that once a year. I don't know if that means I will see her after each mammo or not?
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Amy - I totally get it. I was devastated when I found out that I had a positive lymph node. To top it off, i was grade 3 PR- and only 3% ER+. The only positive thing was the tumor was small. the surgeon that it would be a year out of my life with treatments, 6 months of hard chemo then 29 rads that results in a horrible skin reaction. It was hard but I got through it. I saw both my MO and RO at the end of all of the treatments. Now, I alternate and see one of them every 6 months plus the surgeon as well.
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Amy- the BS does a breast exam and checks for swollen lymph nodes. My cancer was fairly large snd I had positive margins even after a MX so maybe that’s why I need to see her - to check for recurrence.0
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ladies had a pretty emotional day at Rads today. Normally I'm the easy go lucky girl that is always friendly & polite but today I lost it & broke down & cried. I was talking to a fellow BC sister & the look of horror that came upon her face when I told her how many positive lymph nodes i had just set me off. Not sure if it's the tamoxifen that besides the awesome hot flashes makes me super emotional. I honestly wish I understood more about my diagnostic i trust my RO when she told me don't worry we got all the cancer out & it didn't test positive for this that & your low risk for this. Maybe I'm dumb for not asking for everything but I just did not want the added stress & just wanted to fight the beast. I'm tired & emotionally drained & I still have another 16 Rads to go. It's hard being the happy go lucky girl, BC is so not pink ribbons
I know we're all tired & scared but honestly I hate BC & what it does to us & all it takes from us. Sorry ladies had to let it out, i will be okay & get back into my kick cancer in the butt mode soon enough.0 -
So grateful for all of you! I see the BS in January for a 6 month follow up from surgery. I guess I will see then how often he wants to see me. I assumed that I would just be in the care of my MO from here on out. I was looking forward to my last rads in early January thinking I would get a break from cancer for a bit until I realized the next three weeks were filled with more doctors appointments. I honestly will feel better being monitored more closely.
I am glad I am not the only one with worries about positive nodes.
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I’m lurking this thread, I also have two positive nodes, Amy, for me, I think about who can say when is recurring can happen, only God would know. So al I can do is follow what the doctors said and did what we can prevent and enjoy each day. I thanks God when I wake up in the morning and pray for a day with happiness.
May God keep us all happy and safe.
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I always did a lot of research and asked tons of questions at my appointments. Shortly after I was done with 'active treatment', when I was obsessed with worries about recurrence, (which, I think is perfectly normal at that point), my oncologist said something that helped me a lot, "We have done everything that is medically advised for your diagnosis, and you are living a healthy lifestyle.....the rest we have to leave to God." (You can change 'God' to 'fate' or 'luck' if that works better for your belief system). And it is true; we can do so much, and then in order to live a happy, productive life, (however short or long), we have to let it go and get on with it.
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I don't understand how a GP can monitor you during your AI treatment but things must be different in your country. I see MO every 4 months and BS every 6. I don't see RO after TX ended. I assume MO will change to every 6 months soon and BS once a year. I see PS once per year as well to check my implants.
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Wow
So much going on reading everyone's post. OCDAmy, already halfway through rads. Seems like you just started. How are you feeling? I got very tired toward the end, and had loss of appetite. Not sure why radiation would have caused appetite issues, but I needed to lose weight. So, I lost weight, then several weeks later my appetite came back. So, I gained the weight I lost, and then some.😂😂. Are you having any skin irritation?0 -
Hi WorriedMe77
Welcome. You will find so much support and knowledge from these wonderful ladies. What you're feeling is very typical, it's a whirlwind, and all new. You will get through it. Maybe I overlooked, but what is your hormone status, and her2 status for your cancer?
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Ladies
I'm just curious, most of you had chemo with one, or two positive nodes. What I'm wondering, did any of you have the onco dx test? My cancer was so similar to so many of you, stage 2, grade 2, and one positive lymph node. I was premenopausal. With my score of 14, my onco was telling me I did not need chemo. I was prepared to have it, so was taken by surprise. I did not get a second opinion regarding that. For the last several months, I've been wondering if I should have done it. Any pain I get, of course my mind goes to reoccurance. I'm so confused, and wondering if I should have gotten that second opinion. As we know, breast cancer is such a crapshoot. It sucks. Sighhhhhhhh 😒
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HI Jaymeb!
I had an oncotype of 10 and had chemo- I sometimes wonder if I gave myself a bunch of chemo-related problems for nothing. The side effects from chemo are no joke.
I had huge tumors, and I have 2 small children, so I went ahead with it. Had my tumors been smaller I would have skipped it for sure.
yes, total crapshoot, and yes it sucks!
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Hi Annie-B-7-14
As you can tell, I'm very much a night owl. It's 1:45 a.m my time. I know you're three hours behind east coast time. Thanks for responding. I am wondering, did your onco want you to do chemo? Or, did you make that final decision? I sure don't blame you for throwing everything at this awful disease. But, on a positive note, breast cancer has one of the best cure rates. Was chemo hard on you
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also, I just saw that a 3D mammogram missed your cancer the first time. That's scary. But it happens. Do you have dense breasts? Mine are very high density. That makes it harder to show.
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Jaymeb, I think you should trust your doctor, I know it's strange to avoid chemo with POSITIVE NODES, because the doctors usually thinking about the escaped cancer cells, if it's reach to nodes means the chances to break the lymph nodes is high . that's what we know from our doctors and articles. if you can ask 2nd opinion easily and quickly please do it. stage 2 protocols always include chemo, its hard and tough, but it's effective to beat the beast with no recurrences in the future.
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jaymeb-
I had a similar dx, “extensive” dcis, one positive node, and onco score of 14. I’m 39 with a one year old. My MO wanted to throw the kitchen sink at it, but also wanted me to get a second opinion up in Boston because she was on the fence herself. Dana Farber, pretty much the best of the best, with a doc who specializes in breast cancer in young women, recommended no chemo. It would do more harm than good.
I hope this puts your mind at rest a little. No guarantees, but we make the best decisions we can at the time.
Hugs..
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jay, my skin is holding up pretty well. Just getting red with a few little pin prick marks all over.
I got chemo because my oncotype was in that stupid gray area -18 plus I had two nodes and my tumor was larger at 4.5 cm with DCIS. I had a mammogram 6 months earlier that picked up nothing because of dense breasts. That's why I chose BMX, I'll never trust a mammogram again.
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Jay i have a very good friend of mine that did not do chemo, she has opted for the natural route. She is trying to avoid chemo at all costs & has been going to get weekly Vitamin C transfusions. She wants to have surgery & remove more nodes as a precaution & then radiation. Her doctor at first was skeptic but after doing this for half a year & seeing her tumor shrink she may not have to do chemo & her doctor told her to keep on doing what she is doing. Bottom line is we are not guaranteed if the ugly beast will come back, we all suffer from the same anxiety of recurrence, especially if you feel something hurting in your body our first thought is has it come back has it reoccurred elsewhere, i guess it will be the new norm for a while. If your doctor opted for you not to have chemo & believes you are okay with radiation & surgery & lymph node removal, not sure how many you had removed, then continue on that path, i am sure you will be getting checked every few months at first. If they believe you are in the clear & can avoid chemo then that is great, to be honest chemo was not the beast i thought it was going to be, yes it has side effects but it was doable.
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Jaymed
I had the same dx except mine was 2.69 cm so much larger with 1 positive node. My oncx test was 9 without chemo and 11 with chemo, I ended up having chemo anyway because of the size my Dr just did not want to take the chance with it being so big. I did not have rad which I though I would and worried still worry that I had the correct treatment to kill everything . Like you every little twinge I just know its came back. I have been on Letrozole ( post menp )for close to 9 mts now and while I know this little pill helps to keep it from coming back I continue to worry. Im a year out from Dx and at the time I never though I would get this far, mostly due to horrible anxiety, figured a heart attach would get me first .0 -
PVM who is your BS? I'm with Dr. McCready at PMH in T.O. but he has discharged me now as he says I can follow up with my MO in Oshawa.
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Paulette what you said "I thanks God when I wake up in the morning and pray for a day with happiness. " So lovely, made me smile and you are so right!
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Tpralph my BS is Dr Hany Sawires at Toronto East Gen that's where i had my chemo & surgery. I was transferred to Sunnybrook for rads which i am doing now & they have been really great there so far. I have follow up appointments with both my BS & MO in March & from what i gather i shall be seeing them at first every 3 months then i believe 6 months.
Paulette you are wonderful, thank you for the prayers & i am sure all other ladies agree with me we are very appreciative of your prayers.
HoneyBeaw one year post DX is amazing & you shall have many more wonderful years being cancer free. We all share anxiety of this damn beast coming back but we need to be strong & not let cancer take more from us than it already has. We deserve to be happy & i pray we all are happy & healthy.
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I am reading some stuff that is confusing me.
Honeybeaw, it is my understanding that Oncotype is given on the assumption that you are taking hormonal treatment, not chemo. My Oncotype did not come with two separate numbers, one if I took chemo and one if I didn't. I had only one Oncotype score. There might be a percentage of survival with or without chemo, but those do not change my Oncotype score. My score is the number that helps determine if I have chemo or not.
Hope99, I am stage 2, grade 2 with a 2.5cm tumour and chemo was not part of my protocol. I was offered the Oncotype because I fell within certain parameters and the test helped decide my treatment path. I think my tumour size could have put me in chemo range. But I had no LVI, no necrosis, no family history and the one node they could find was clean. But I have wondered if I didn't miss out on a chance to beat the beast by not having chemo? I also see so many women who have permanent effects from their chemo and think they live daily with the price they paid, and a high price it is.
There are other tumour factors that help paint an overall picture of a situation, like LVI and necrosis and family history. As well, tumour size seems more and more to be related to long term survival. So even low grade tumours that are large can pose a risk, just because of their size, some studies seem to be saying. Add in younger women with kids have more to lose. Which is NOT to say that any of us wants to die from this disease. But oh my god, when I hear about women raising kids and going through this, my heart breaks for them! That was my worst nightmare, dying before I was done raising my daughter. Pure hell. I think this is why sometimes aggressive treatment is taken in younger women ... they are leaving no stone unturned to make sure kids have their moms as long as they can have them.
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Thanks Cpeachymom, Hope99, PVM, and HoneyBeaw for your responses. It helped put my mind at ease a little. I will still wonder, hmmmm, should I done chemo, and would have done everything I could. I have lurked around on other forums, and as we all know, women who have done chemo still can have reoccurances, and women with DCIS, or Stage 0 have it come back. I have also seen women with Stage 3c and are many years out, and that is with many lymph nodes!!!! Breast Cancer is just such a mystery.
Cpeachymom, I'm familiar with Dana Farbar. It is one of the best. Also Sloan Kettering, MD Anderson, and Mayo Clinic. If I got a no from them, I would not have done it either. You're young, and I'm assuming premenopausal. I'm 48, and premenopausal as well. I'm glad you did radiation, as you know, that brings your chances down quite a bit for local reoccrance. I'm glad I did radiation as well. Tamoxifen is going to be our best friends for a long time. How are you doing on that? Any side effects?
HoneyBeaw, if your tumor was smaller, would you have skipped chemo? Also, I'm a little surprised you didn't get radiation. I got two opinions, and due to my positive node the onco wanted radiation. Since you had chemo, maybe you didn't need it.
PVM, your friend is brave. What is her stage, and hormone status? You said she wants more nodes taken out. Does she have positive nodes? I wish her well, and hope it all works out. But you did hit it on the head, absolutely no guarantees.0 -
jaymeb-
My husband was very glad he came to the Dana Farber appt because he said he would have a hard time believing they said no chemo if he hadn’t been there!
I see the Tamoxifen as my 5 year insurance policy, though I know there’s no guarantee. I think I’m doing well, lots of hot flashes after the first 6 weeks or so. Also have monthly Lupron injection to suppress my ovaries.
My MO still wanted to do Some chemo even after the second opinion, but why make myself sicker for nothing? Poison all my good cells when those cancer buggers are just hiding and laughing? That’s how it played in my head!
Radiation was a good choice, but went horribly wrong, now I’ve got radiation pneumonitis that is taking months to heal and a bunch of meds to take because of it. Those are the risks we take
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Runor
I was also very surprised about the two different scores, talking to my Dr he said Chemo has its own demons and that is why the different scores. It reads Tam alone 9% , Tam and Chemo 11%, . Dr said because of the size and the 1 node he just could not strongly recommend chemo. and I was on my second chemo by the time we got these results. From the time of Lumpectomy: which confirmed cancer and where they did not get good margins to first Chemo was right at a month,, left mx in between. The fear was because they did not get good margins they had disturbed the cancer and it would spread
Jaymed . Yes I would have taken the Chemo, I went into this with a Throw the kitchen sink at this monster attitude. While I was terrified of the chemo from seeing friends go through it , I can honestly say I got through it with very few issues besides the normal SE. as for the Rad while I ask and wanted the Drs said NO they felt that the chemo had done its job. So while I do worry I have to have faith in my Dr that they gave me the correct treatment .
PVM, I always heard people say cancer changed me and I always wondered how . Well I know how now . I wake up every Morning and thank god for a new day, I have become a much calmer person where I do not sweat the small things anymore , I an care less if my house is a little messy or what people think. I have also found that I have a very low tolerance for bullies and gossip and attention seekers, I have had to remove people from my daily life due to those behaviors. I gladly spend more time with my family, worship my time with my kids and grandbabies and after 37 yrs of ups and downs with hubby I no longer question his devotion cause he was by my side every step of the way and still is . Yes we married very young
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Honybeaw, can you explain the diagram please? most of the doctor said the chemo kills the cancer cells ever, and the recurrence is low with er/pr+ and her2-/+ .
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