Lumpectomy Lounge....let's talk!

mustlovepoodles

LTF, could it be that your cold symptoms are actually allergies to pollen? I don't know when the trees bloom in Canada, but here in Georgia the pollen is killing us. It's over 4000 parts per million--anything over 100 is high. Everything is covered in yellow dust and you dare not sit down on a bench or chair out there, or your whole backside will be covered in yellow.

I also had a runny nose from the first week of chemo in Oct until late Feb (PFC late-Dec.) A question about your bone pain: Did they mention anything about taking Claritin? A lot of MOs recommend taking Claritin for 5 days post each chemo. They don't seem to know why it helps with the bone pain, but those who take it do seem to have less pain. I did. I still had some, but the only time it was severe was the first time, when I didn't get the Claritin. And it was really severe, like 10 out of 10.

Happy Hammer, I work with adults who have developmental disabilities like Down syndrome, autism, chromosome disorders, etc. All of them have some degree of intellectual impairment from mild to profound and for whatever reason can no longer live with their families (parents are elderly or no longer living, client has severe behaviors or mental illness, siblings uninterested,or care is extreme). My agency finds them homes where they can live as a family with the homeowners, rather than having to live in a state institution. I do the caregiver and staff training and I absolutely love it. My youngest son (age 21) is actually in our program; he lives with a lovely couple who are younger and stronger than us about 45 min away from us.

While I'm in San Diego I'll be able to take the certification exam to become a Certified Developmental Disabilities Nurse (CDDN.) Crossing my fingers that I pass the test. If I don't, I will be doing the walk of shame when I get home. My boss is spending $$$$ for me to go out there and I don't want to let him down.

PontiacPeggy

BeachW3, my thought on Tamoxifen and the Aromatase Inhibitors is: I want to do everything possible to help ensure that my BC does not come back. I've been on Arimidex for nearly 1-1/2 years with no issues. But everyone has to decide for themselves the risks and benefits of any treatment.

LTF, I didn't have any trouble with radiation. I don't recall hearing anyone having to take time off because of fatigue. Some people do get tired but work everyday. I was caring 24/7 for DH during the 1st 2 weeks and then at the hospital while he was recovering from surgery and then pneumonia and still getting my rads and no addition to my exhaustion (which I had before being diagnosed). Just plan to rest a bit more and slather on the Aquaphor or preferred stuff to keep the skin good. I didn't do anything until after 17 sessions and had very mild redness (I hadn't even noticed). Hopefully you'll be the same. Good luck with your chemo today. You've done great!

HUGS!

LovesToFly

Thanks everybody! Good feedback about the radiation, I don't mind being more tired and needing to go to bed early every night, I just don't want to take an extended leave afterwards!

Have been taking Claritin since I started chemo. When I was on the first chemo (FEC) I did not have any bone pain with the Neulasta, it's worse with the taxotore however I do continue the Claritin, and I have heard from many people that the taxotore bone pain seems to not be as bad after the first infusion, so hopefully that will be the case.

Over the years I have experimented with different anti-allergy medications in early spring when I can to get so sick, it has never helped. What did help was going off gluten, for reasons I don't understand when I am on gluten I am very prone to tonsillitis, and get it every time I got a cold. Now I still get the cold but I don't get tonsillitis ( and if I slip up with gluten, I got tonsilitis every single time!)

I have been told that zinc is OK to take on chemo and with er+ breast cancer, so I am trying that instead of my usual vitamin C plus oil of oregano, and hoping that it helps me avoid a cold this cycle. Runny nose is probably the chemo but that's not what's killing me, it's the headache/lack of energy/sore throat/low fever.

iammags

LTF- good luck. I hope that your chemo session goes well and that you don't get sick.

Wow, it seems like if the cancer doesn't kill you the treatment will.

Sloan15

BeachW3 and LTF - I was in 40 mg/day of Tamoxifen (DOUBLE the normal dose you will get) and I had no SE's from Tamoxifen. Like Peggy says, most people don't have SE. The ones who post usually do, so it scares people. Expect no SE's, and if you get them, the doc can do a reset (where you stop for 2 weeks and try again) or change meds.

LTF - Walking really helped during radiation. I think that's what kept me going. There we 2 days when I was walking with my son and told him I had to cut the walk short because I was tired. So that meant we went 1 mile instead if 5. You can do it. Just trust your body to tell you when to rest.

LovesToFly

thank Sloan!!!!

beachw3

Hi everyone, my breast is swelling after one radiation treatment...is that normal?

Also I work full time and going to grad school at night but it is online....I keep hearing about fatigue...anyone experience that?  I hear exercise is important too...do you all agree?

Peachy2

LTF, if you were back at work a week after surgery, you should have no problems with radiation. A co-worker in one of our company's remote offices and I were diagnosed around the same time, and she didn't have chemo. We compared notes when she was finished with radiation and I was just starting. She described being so tired in the evening, then not being able to get up in the morning. I waited for this to happen to me, though it didn't. I asked the RO, and he said that often patients who have had chemo don't report fatigue as often as those who haven't, because by comparison it's not that bad. I stopped in for treatments in the morning on my way to work, and adding that to my routine was really the only disruption in my schedule. Hope you find the same!

Molly50

beach, you are already doing rads? I had to wait 6 weeks post op to start rads. You might have a seroma. You need to talk to your RO right away. LTF, I worked all through radiation. It is so quick after the first appointments for your SIM that it is literally on and off the table in mere minutes. The fatigue didn't hit me too hard but I have heard that ladies who had chemo first get hit harder with radiation fatigue. YMMV

LovesToFly

Think I will plan to start working while I'm doing it, with an hour or so a morning off to make sure that it's not too much a rush from the appointments, if the fatigue starts kicking in I will recinsider, I've heard it takes a huge couple weeks anyway for the fatigue andskin problems to really start if they do

beachw3

Thank you Peggy and Sloan!

MLP3

beach- welcome! Ditto to everything that Peggy and all have said. Research is finding that for most breast cancers, there's little difference in risk between lx and mx. Most mx stories I am hearing are prophylactic. It's a very personal decision. Genetic testing also plays a role. And I don't think that dcis would be the ideal reason for an mx. At first we all say "get rid of both of them!" as soon as we hear our dx. But after researching and getting the plan from our doctors, breast conservation is now the most current plan of attack.

Moondust- I am missing the forest more than you know!

Gami- I don't work, so I can't really weigh in on that. But, I can say that I admire everyone who does... I don't know how I would get through this AND work. I'm so tired and in bed a lot.

Sloan- Can't begin to tell you how happy I am for you!!!!

Grouches- I'm thinking second opinion...

HH- what a rewarding job! And must be nice to know that your son is getting the best care;)

LTF- I heard rads can be taxing on you. I read Dr Loves excerpt on how it has to do with certain proteins that run around your body that zap you of all energy. I agree with you on the Tamoxifan. I'm 100% ER positive with ovaries intact. We gotta do what we gotta do!

Chemo number 3 yesterday and I was sooooooo sick. Much worse than the last two. I finally took zofran and compazine together and my son put on the anti nausea wrist band.... I'm feeling much better today than I anticipated. Could also be the acupuncture because I was miserable for days after my second tx. Probably shouldn't speak so soon!!

On another note, my son was accepted to a boarding school in Maine! He was also recruited by the freestyle program and has a spot on the team. I'm so happy for him but so sad that my baby won't be here every day. But I have to put him first. He's at an all boys private day school now and the stress on his academics is just eating away at him. He took my diagnosis very hard and it affected his grades. And to add college visits and sats and applications next fall... Way too much for him. He will repeat his junior year at the new school and a successful one will look great on his college resume. I mean... He has a pretty valid excuse and a good topic for his college essay😉

beachw3

Hi Molly,

What is seroma?

I had my surgery on 2/17 and just started rads yesterday 3/29....you think that is too early?  and by SO you mean surgical oncologist right?  I asked the tech today and she said no worries and you will see radialogist oncologist tomorrow so you should be ok.

i'm not sure what to think, but it seems odd

beachw3

thank you MLP!

PontiacPeggy

MLP3, sorry you felt so rotten yesterday but glad today is better. Very exciting for your son. Is he looking forward to going away to school? Probably wise of him to repeat this year. It will be difficult letting him go but it might give you time to rest and heal.

BeachW3, No, it isn't too soon to start your rads. But I had several appointments with my BS, MO and RO before I started my rads. My impression is that you haven't been seeing your oncologists much. Not saying there's anything wrong with that, just different from my experience.

HUGS!

MLP3

Peggy- he wasn't keen at first going away so soon. But now he's excited for it. We have a revisit day Sunday and Monday that I'll be able to go to. I'll be able to get a good feel for him and the school. The last visit day I was too sick from chemo to go:

LovesToFly

OK I have a stupid question, I am er+/pr+. Everybody always talks about estrogen, but what about progesterone? Where does that come from? How do we limit it?

MLP3

good question LTF! I'm 100% ER and 50% PR.

Sloan15

LTF - I read that the more PR+ you are the lower your risk of recurrence. You might want to ask Moondust because she was 40%. Her Oncotest called 40% a PR- and might be why she had a higher Oncotest score than me. So, PR is not a bad thing as far as I can tell in the reading.

Sloan15

I think that is why some docs call for chemo if PR is low.

MLP, did you get an oncotest? If so, it will show on a continum if your % is considered PR pos or neg. I'm 90% ER+ and 90% PR+, and the Oncotest gives me aI 10.1 positive on ER and 8.9 positive for PR. I think scores under 5.5 are negative, but that is not a percentage. I think this is why some docs get the oncotest and decide on chemo or they see the grade, size and hormone status and decide chemo.

Sloan15

Darn. I forgot to wear my Fitbit on my long walk today. Ok, in my heart I know I met my goal!

PontiacPeggy

MLP3, I'm glad you're going to be able to visit the school with him. You'll get a much better feel for the school and how he seems with it.

My Oncotype test has my PR at 8.4 on a scale of 10. One would think that means 84% positive. My ER score was 10.7 out of 12.5 - that would seem to work out to 83% positive. My recurrence rate with Tamoxifen was 9% (I take Arimidex).

HUGS!

mustlovepoodles

Mine was ER 60%, PR 0% Her2 neg. Oncotype 23. PR negative cancers are more aggressive. Probably the main reason my MO advised chemo.

LovesToFly

my PR and ER are both 95%. I never did onctype testing, I keep planning to ask my MO about it, but I figure it's too late now hippie way my tumours probably been disposed of.

MLP3

my oncotype score was 27. Where do I find the other info on pr and ER? My test results are downstairs and I'm too lazy to take the trip... It's nap time;) I'll check in later to let you know what it is.

Just told my son he was accepted and I haven't seen a more genuine smile like that from him in a while:)

stellamaris

LovingGrouches - to clarify, the 1st re-excision was at the recommendation of the BS. Because there were still positive margins, it was decided that I would have a right mastectomy with immediate DIEP recon. This decision was made on Dec 2. Unfortunately, the BS and PS could not align their schedules and the surgery was scheduled for March 24. I was very unhappy about the time lapse, so I requested a 2nd re-excision in a last ditch attempt to get clear margins. My intent was partially to avoid major surgery, and also to speed up the treatment plan. It was a gamble on my part. I was comfortable with trying because I had tolerated and healed from the lx and re-excision very well. My BS agreed to do it. Unfortunately, the 2nd re-excision did not clear the margins, and also confirmed that the cancer was multi-focal, so the March 24 surgery took place. The tx for cancer are unique and tailored to each woman according to the characteristics of the tumour, family history, etc. Of course you should trust your surgeon and between the two of you and your MO you will land on the tx right for you, I'm sure. My cancer is ILC and was larger and had a growth pattern other than what was initially expected. I do not have to have chemo, for example, because ILC does not respond well, and the benefits of chemo in my case would not outweigh the side effects.

Keeping my fingers and toes crossed for good results!!. Take care.

stellamaris

MLP3 My onco score was 27 as well. The ER/PR info is on page 2 I think. There is a scale provided.

Moondust

Sloan, don't you just hate forgetting your Fitbit? I know I do!! It's like it gives us credit for our efforts.

LTF, my PR was 40% on the path report and was shown as being in the negative range on my Oncotype report. Here is a good article that explains the receptors well, and tells about new discoveries. Here's another article about the role of progesterone in breast cancer. They found that tumor control was better when they gave the mice tamoxifen plus progesterone!

I am concerned about having low PR receptors and also concerned that my MO did not mention this as a risk factor. That's probably the main reason I changed my mind about having chemo. AI therapy will probably not have the same benefit for me as it will for Sloan with her higher ER and PR (my ER is 80%), although I'm hoping it will have enough benefit combined with my low body fat and consistent exercise. Maybe in 5 more years they will have a new strategy for women whose tumor is ER+, PR-. We can always hope!

Another interesting thing about my progesterone is that when I was trying to get pregnant in my mid-30's, my ob gave me progesterone boluses in my first trimester after I had two early miscarriages. She said that my progesterone levels were low. That pregnancy was successful (and I skyped with it last Saturday). If my natural progesterone is low, perhaps that is why my cancer doesn't have more PR receptors. That's a totally out-of-the-blue guess, but who knows.

MLP, my Onco score was only one point lower than yours, and that's with your Grade 3 vs my Grade 1 tumor! Chemo, here I come!!

stellamaris

Moondust - great article! Thank you:}

Molly50

Sorry beach, my phone was wonky this morning. It looked like your surgery was 3/16 not 2/16! I meant RO if you are swelling. A seroma is fluid that fills into the cavity after the tumor is removed. I know ChiSandy had quite a time with her seroma. I had one but it was a non issue after my mx.