Lumpectomy Lounge....let's talk!

LovesToFly

I am so scared of rads. Starting May 24. Had my mapping Friday.

Lovinggrouches

Lovestofly, nothing to be scared of. I didn't get too uncomfortable until week two. Mostly zingy pains at times, extreme nipple sensitivity, and now after 15th rad, extreme itching, but lotion the RO sent me to get that is a special blend of his, helps with applying 3 times a day. I have had to forego bra into second week, and use corn starch now since under my breast is uncomfortable when I sweat. It's doable, not fun, but doable!

Grazy

Thanks Peggy and Molliefish! It's so great to hear from those who've been through it. I love to hear everyone's experiences.

HappyHammer

Jill- Rads was tough but...I found that taking my own music and headphones was such a help. Also, used my oldest bras and sports bras- and, then, none whenever possible. Also found that raw cabbage leaves (washed and dried and stored in the fridge) were the best help of all to remove itching and the heat caused by rads...hugs to you as you begin this new chapter. (The winter rads thread has so much great info)

tbalding

Dorothy, sorry to hear about the onco score. Will be thinking about you tomorrow.

Molly, hope the soreness is something easy to treat.

Hugs!

createdonpurpose

Getting ready for my surgery and just gotta share...visited my mom in a neaighboring state this weekend and she sent a cooler full of pre-made meals home with me! All together I have 15 ready to cook meals! What a blessing!

molliefish

Created what a great gift from Mom! That is such a wonderful thoughtful gift. All the best .

Kokomo26

Grazy, just to clarify they said cream was to be fully absorbed before tx so I usually used it 21/2-3 hours before. (they had said at least 2). Each center/RO has their own instructions.

Jill, I was very scared too but the techs were just wonderful and patient with me and answered any questions I had. I had to use the snorkel and nose guard to protect my heart which was hard to get used to but slowly I did. Now I am extremely scared to find out if I am to have chemo which you have already aced---hope you are feeling much better from your last treatment. PM me if I can help in any way.

HappyHammer

Created- what a great gift and such support from your mom. Happy for you! You WILL get through this!!

froggie

I'm way behind in reading posts. I read the last 2 pages and will try to catch up later.

Dorothy, sorry to hear about your oncotype score. I feel for you. Mine was not as high as yours but the MO originally didn't want to do it because she expected it to come back in the single numbers on the right and in the mid to low teens on the left based on the pathology. I was primed for these low scores based on her years of clinical experience and was gobsmacked when they came back in the mid 20's - to be fair she was gobsmacked too. I agree with everyone else - go in with your list of questions and see what she has to say. Hopefully the very small size will be factored in to her recommendations.

LG, glad you had good biopsy news and were able to made a decision about surgery that you are at peace with.

HH, congratulations on finishing up your herceptin treatment.

froggie

Created, what a thoughtful gift. That's one thing less you'll have to worry about while you are trying to recuperate. Sorry, I forget but isn't your surgery this week?

Molly, fingers and toes crossed that the sore ridge area isn't anything serious. Does massaging it help at all?

Geez, moondust sorry to hear about the dental problem. Hope the procedure goes smoothly - you need to catch a break. Glad you finally have an appointment for your 2nd opinion. Here's hoping it will be a fruitful appointment.

tbalding, glad you are feeling better. Best of luck with the upcoming surgery. Fingers and toes crossed for clear margins and negative nodes.

Grazy, good to hear that your mom is recovering nicely.

Peggy, hope you are feeling better and your allergies ease up. I feel for you - year round allergies suck.

Kokomo26

Moondust...sorry to hear about your need for endodontic surgery...best of luck on Friday. Glad you have your date now with your second opinion..very interested in hearing what they say.

HappyHammer....wow!..such a wicked infection from a splinter!. Yes, those chilled cabbage leaves were a great relief.

LG, good luck with your remaining rads...like HH said..lots of great tips on the winter rads started by Mary.

Kokomo26

Tbalding...thanks for your kind comments..hugs back to you.

Created....how thoughtful of your Mom...Wishing you the very best with your surgery and recovery.

Froggie...thank you and yes "gobsmacked" applies to me as well. Bringing my journalist daughter with me who is great at taking notes...still working on my list of questions.

froggie

I'm almost done with rads and it wasn't as bad as I thought it would be. I have one remaining on the left side and 3 on the right side.

The RO couldn't do boosts as originally discussed so she added an extra rad to each side. I was fully expecting boosts and I am really disappointed in the change in plan. She was aware of the size of the tumor bed, etc while she was designing the plan so I am annoyed that she didn't say anything before rads actually started. Had I l known, I would have went for a second opinion at Kettering to see if they may have had a work around.

For what's its worth, I used miaderm twice a day for a full week before starting rads as their website suggested. I was told not to apply it 4 hr before Tx which was in the afternoon. I applied it immediately after treatment and before bed. My skin was lightly pin after a treatment but seemed to fade to normal by the next morning. My skin started to look sunburned after 12 rads (on a scale 1-10 - I'd say a 3 or 4). I haven't had any shooting pains in either breast. They both started to feel tender 2.5 wks in and I'd say similar to how they felt just before a period. The left one has finally started to itch and since I only have one left on that side, I am hoping for the best. I will try the cabbage leaves as HH suggests - thanks HH.

Tuesday I see the MO for my AI script. Femara is the first line of AIs on my insurance plan. She prefers to start with arimidex but I will ask for femara and see how it goes. I've been using vagifem and I expect there to be a ruckus over that. I am printing out the info from Sloan Kettering to take with me.

For those interested they have a clinical studying going that looks at serum estradiol levels in women who have had breast cancer that are using 10 mcg 2x/wk that will end in Sept 2016. They currently have posted the following on their site:

Estradiol vaginal tablets (Vagifem^®) are small, vaginal suppositories that are put inside the vagina nightly for 2 weeks. After that, they are put in twice a week. Very little estrogen is absorbed into the body. Estradiol vaginal tablets are a good option for women with a history of breast cancer. However, large studies looking at estradiol vaginal tablets in breast cancer survivors have not yet been done, and the information that comes with estradiol vaginal tablets says that women who have had breast cancer should not use it. A recent study here at MSK showed that the estrogen levels in the bloodstream in women with breast cancer who were taking Estradiol vaginal tablets stayed fairly low. While this was not a safety study, it made us more comfortable continuing to use it. Talk with your doctor to see if this medication is a good choice for you. - bolding mine

https://www.mskcc.org/cancer-care/patient-education/managing-symptoms-menopause

https://clinicaltrials.gov/ct2/show/NCT00984399

ChiSandy

HH, I’ve decided to fly into & out of Charlotte & rent a car in order to minimize the number of days I must spend at high altitude as well as shorten travel time at both ends. (Today I didn’t wear compression--hadn’t even occurred to me--and had brunch on the 95th fl. of the Hancock Center, 1800’ above sea level--got some arm swelling). This way I can fly to my conference on the 18th, drive to Hickory on the 22nd and fly home the 23rd or 24th. (And I’ll be home by the time Bob’s scan results are in). But because I can only check 2 pieces of luggage (one of them my double dulcimer case--I can carry on my guitar), I won’t be able to bring the folding keyboard stand I use so I can play dulcimer standing up. (At the conference, my singing partner will have the one he keeps for me in his car, but he needs to head for home in WI Sun. morning). Is there any way to scrounge up either a folding keyboard stand--or even a waiter’s tray stand--I can use at the Alehouse? Worse comes to worst, I can sit down to play dulcimer, but I sound better singing standing up.

Moondust

Dorothy, I'm dismayed to hear your onco score, and I hope you get a clear answer from your MO tomorrow. Hopefully the small size of the tumor will be enough to reduce your recurrence risk to a "no chemo" answer. But even if chemo is the best option, it is not the end of the world and you'll get through it. We are cancer warriors and we'll do okay! Chemo sucks but it is doable as many of these wonderful women have told us. Great idea to have your daughter take notes! In fact, you have given me the solution to a problem I was having -- my cousin, whom I'll be staying with in San Francisco, wants to go with me to my appointment. I was feeling uncomfortable about it because I've always gone to my appointments alone and don't really want another person to distract the doctor with "beginner" questions. But now I will ask my cousin to take notes! That should keep her busy (and quiet). I will tell all as soon as I get back from my second opinion!

Froggie, thanks for the info on the vaginal tablet studies. That will be a great boon to women on AI's if they turn out to be safe. Have you read anything on which AI affects joints the least? That is the one I'd like to end up on. Right now I'm on generic arimidex.

My rads experience was pretty mild compared to some. I used Miaderm and was told to apply it at least 2 hours prior to the session. I also applied it right after rads and at bedtime. It is not greasy. For the first couple of weeks, my breast would feel warm after treatment, but was back to normal by the next morning. I actually wore a soft bra 24x7 during rads to keep the bad girl as still as possible so that there would be no chafing or pulling of the skin. I did not have much discomfort. My skin under the arm got red during the last week of regular treatment and was the worst a week afterwards. My breast itself didn't get red until boosts and a week after. I'm pretty much back to normal one month post rads. I could not wear headphones because I had to listen to the tech's instructions for when to hold my breath and breathe. I didn't feel any type of emotion about having rads except it was very nice to be done and not have the time taken out of my day any more.

Thank you everyone for the much needed sympathy and support with this stupid tooth surgery coming up. I am starting to worry about it more than I did about my lumptecomy! I hope he does not stretch out my lower lip so that I look weird with a droopy lip and jowl for days afterward! The purpose of saving the tooth is cosmetic, so it bothers me that my face might look strange due to the procedure. I don't want to go to my second opinion looking weird! Of course I don't know that this will happen but I've been thinking about it. The tooth is on the bottom right, fourth from the center of my mouth.

ChiSandy

I had a relatively easy time with radiation--though each session was essentially as strong as a boost, it was aimed at a small area and there were only 16 sessions. I was told to come into each session without any creams or lotions on my skin (though because my underarm wasn’t radiated, I was allowed to wear any kind of antiperspirant or deodorant I wanted. I was given samples of Aquaphor, which I applied every time I get back into my street clothes. At night, I found alcohol-and-fragrance-free colorless 100% aloe vera gel (Fruit of the Earth) plus calendula cream were the best combination. I started getting pink after the first treatment and red after the third--but never got any irritation, skin breakdown, itching or fatigue. I was even able to wear underwire bras--but by the end of the 3 weeks I had to go up a size (from 38 I to 40 I) because my mammary seroma grew and the area over my lumpectomy scar swelled and the skin tanned and fibrosed. (Several months of wearing a Swell Spot in my sleep bra, plus alternating weeks using a prescribed triamcinolone ointment, has faded the red to light pink and the fibrosis softened. I can get back into some of my 38 I bras again). I got none of the fatigue I was warned about. Currently, I use CeraVe lotion (Curel Extra in very dry weather).

PontiacPeggy

Created, What a great Mom! She knew what you needed!

HUGS!!!!

Grazy

Created, a cooler full of prepared meals from your mom - now that's what I call the gift of love!

MJS1266

LG/Sissy,

Haven't gone through all the posts, but I was over 207 lbs when I had my hysterectomy and it was done laprascopically with vaginal assist. The Gyn never mentioned an issue about my weight for surgery and when I scheduled surgery I was a lot more. As to weight loss on Tamoxifen or post menopause it is just has hard as before but can be done. I've lost around 45 lbs since starting to take Tamoxifen about half before and half after hysterectomy. I am still working on the remaining 30. All the best, Mary-Jo

Moondust

Mary Jo, congratulations on the weight loss! Yes, it can be done, even on AI's or tamoxifen.

Created, it is wonderful that your Mom came through with all those prepared meals for you! I hope you can continue to be in close contact with her, because she seems very supportive!

I re-scheduled my tooth surgery to be the day after my second opinion. I feel better now!

PontiacPeggy

Moondust, glad you re-scheduled the tooth surgery. Very smart.

Mary Jo, way to go on the weight loss!

HUGS!

HappyHammer

Sandy- glad you are flying! We will work on getting the equipment that you need and it worse comes to worse we can use a tray stand.

MaryJo- Yay on the weight loss!

Moondust- glad you changed your dental work until your 2nd opinion.

FGodmother

I hope this is the right place for this: I am having a lumpectomy with SNB this Thursday, May 12, and I am wondering what you were able to do post-surgery, We have tickets for a four-hour flight two days after my surgery to visit my inlaws. BS seemed a bit hesitant to let me go, but made me promise to get up and walk every 30 mins to 45 mins to avoid deep vein thrombosis. What did you feel like two days after your lumpectomy, and what were you able to do? What restrictions did you have?

LovesToFly

2 days after my surgery I was still very very tired from the anesthesia. I wasn't in a lot of pain but I would have wanted to be at home.

Molly50

Welcome FGodmother. Two days I still had my drain in and I was icing my incisions every couple hours. The other risk for flying that soon is lymphedema. Is there anyway to reschdule your flight?

Molly50

Jill, Did you say you are starting rads soon?I found reading the thread of the rads group before me was very helpful. I ended up using miaderm, aquaphor, CVS aloe vera with lidocaine (the green stuff) and udderly smooth. Later RO gave me a rx for EMLA cream because my under arm area was purplish and peeling. Over all though my experience wasn't bad because once things started looking bad RO gave me a break to allow my skin to heal. You can ask for breaks. Speak up if you are in pain and ask to see the RO or nurse if you want something looked at. My team was really, really good.

Grazy

FGodmother - two days after surgery I would not have wanted to fly anywhere - I was sore and tired, and I couldn't lift anything at all with my right arm or I got zinging pain shooting down my arm. I was also still quite uncomfortable in bed at night - propped up my arm with a pillow and stayed on my back to be comfortable. I was out driving around and doing errands, taking my daughter to practice by day 4 though - still a little low-key but pretty much back to normal low-energy activities by then.

Z317

I'll be starting rads in the next week or 2. I've heard the skin will be tougher and often the radiated breast might be perkier......not something I want!! I didn't want to do rads but since it's infiltrating I guess I should.....but I might have rather one day had a reduction and BS says radiated skin is harder to work with. None of this is making my day.

Moondust

FGodmother, maybe you could get a refund on your tickets. I just learned that my credit card provides travel insurance which will refund the complete ticket price for sickness and medical emergencies such as yours. If you paid via credit card, please look into whether they will cover a refund. I would be worried about lymphedema along with the DVT.

Z317, it totally depends on your individual skin and breast as to how it will look after radiation. Mine is not perkier. I still looked fairly matched on both sides. The skin does not seem any tougher, just tan. Since you probably don't have a good option, why don't you just wait and see. It may be nothing to worry about, and if you don't like the eventual result your insurance will probably pay to have the two sides matched.