Lumpectomy Lounge....let's talk!
Comments
-
That is a great report Patsy
0 -
Good news Patsy. Breathe...... Ah! The rest is doable. We will all be here to help if needed.
Jo
0 -
The hierarchy of care, explained to me by my surgeon...
Medical oncologist is the "captain of your ship". There is only one captain if you want to sail smoothly. He will be overseeing my care for at least 10 years, frequently the first year, less the second year, until it is annual visits.
PCP is in charge of non-cancer related healthcare. She is forever.
Surgeon will be with me for at least 5 years. He will be in charge of breast exams and ordering mammograms.
Radiation oncologist is in charge during radiation. (I've already been released by him.)
I love my entire team. I've got the best around here.
0 -
dlj140,
Thanks for your comments. I wanted to hear what others have found about their team, and who manages what.
I’m going to ask my team, but what you have described sounds right, so that was reassuring.
I think the world of my team as well, so am hoping that I stay connected to them and don’t lose the benefit of their knowledge and experience. While I have a good PCP, I’d rather my breast cancer stay with the experts.
Best wishes to you as you move forward
0 -
Great description of the team hierarchy, Donna. Thank you. I have felt so confident since my primary care physician referred me to the breast care center where I went for my biopsy (2 hours away but worth the drive) that going with the surgeon recommended by the biopsy doc just made sense; my breast care center navigator recommended the oncologists I'm meeting on Tuesday. Those referrals from people I trust mean a lot. And at this point I HAVE to trust.
As much as I usually like to manage (okay, micromanage) some things, this is NOT one of those things. I have an Art History degree...not a medical degree, after all! This website and all of you have been - and will continue to be crucial for me; plus the research that I can do to inform myself. However, the oncologist will be the head honcho.
It was a cousin of mine who had Triple Negative a few years ago who told me that she decided to leave the big decision making on treatment to the experts. (She is one of the most brilliant people I know and is also a painstaking researcher but in this case, she knew she had to concentrate on getting well and taking care of herself. If she could relinquish control, I certainly can. (She's just fine, by the way, after treatment.)
Thank you!
0 -
Hi
This is my first message here. I had a Lumpectomy with two nodes removed, Radiation Therapy and Hormone Therapy. I was diagnosed last year Feb 2017. I was fine after the Radiation treatment and didn't go to the group sessions as I felt I didn't need it. Since then I have had no end of problems with my shoulder, arm down to my hand and my chest area with pain radiating up to my neck. At first I thought this had nothing to do with the Cancer treatment but I think now I have to consider this is the reason. I just didn't think the treatment could cause these problems. I thought I had a shoulder muscle problem and had exercises from the physio. Then it seemed to me that the Letrozole Hormone tablets I was taking were making me so ill that I had to stop them with the permission of my oncologist. I felt so much better days after stopping but my shoulder is still bad. I have seen another physio but they just say that there is nothing they can do because I can move my arm and although weak, I do have full use of my arm. This means there is no further help for me. My shoulder aches every day going up to my neck and down my arm. Sometimes I loose feeling in my hand and drop things. I feel my chest area is unstable and also aches. I am taking very strong painkillers. My issue is that if I try to do anything such as cleaning, gardening or even just minor movements with my arm, I have so many problems the next day because of pain. This means I cannot do anything I am supposed to do at home or for my work. Is there no rehabilitation aftercare for this kind of thing? My GP has examined me and said there is nothing she can see or feel that could be wrong. I have the feeling my arm is slightly swollen around the wrist. Is there anywhere I can go other than the GP to get more help. My Cancer care nurse has not been able to advise. I have been discharged from the hospital now. Oncologist has just said it is normal to have problems and it will get better over time. Anyone have the same and got some help for it?
Many thanks and appreciate your time and help.
Just want to add something which may help others. If you are having severe problems with Letrozole ask your oncologist what the chances are of the Cancer coming back if you don't take the Letrozole. In my case, it was not worth the tiny risk. If I had been advised of this I never would have taken them. It seems they don't advise you they just automatically give you the hormone tablets because you fall in that category. There are also other types of hormone tablets you can take which you can switch to if what you are taking is causing you lots of problems.
Angela
0 -
hi Angela. I have experienced some issues on the affected side. Not like yours but a lack of strength and I had cording in the beginning. I took physio that resolved the cording but I believe that my weakness and soreness are due to the damage to the muscles and nerves right at the side of my chest wall during the lumpectomy. I can't offer any advice other than to keep trying to strengthen the muscles and take massage if you are able for the soreness. All the best. Nikki
0 -
Thanks Nikki, I hadn't thought of damage occurring during the Lumpectomy. I had no Radiation on my armpit yet there is no hair growth there anymore which is strange. Perhaps, the Lumpectomy affects more of the surrounding area then I realised. I did have a lot of soreness and aching of the ribs after the Radiation treatment and have the idea that the Radiation has just skimmed over my ribcage and chest causing further problems which then has affected my shoulder and arm. I am a bit scared to do exercises. Last time I did them with a tin of beans as suggested, I put my back out although that was the time that the Letrozole hormone tablets were doing there worst. I guess the best thing to do is try again with the exercises and without the weight of the tin of beans.
Thanks for getting back to me so quickly Nikki. All the best to you, Angela
0 -
Angela, you might check to see if there is a physical therapist in your area who specializes in treating and preventing lymphedema.
Some of the pain is likely due to the healing nerves from your surgery and some may be related to your limiting your use of your arm. It can be a "Catch 22" -- it hurts to use your arm and it hurts when you don't use it. Try restarting the exercises you were doing but start slowly so your can rebuild the function of your arm.
I'm finding that when I feel the lousiest it is exercise that helps the most. Darn! All those articles recommending exercise were right!😊
0 -
6 mos post op diagnostic mammogram tomorrow. Told me it will take about 3 hrs and I will get results before I leave. Inhale and exhale , not to excited about getting smashed as I am still somewhat sore. I also have oncology appt in the am; following up on me 3 mos after beginning tamox.
0 -
gigibee - may the force be with you tomorrow! I saw RO today for last follow up, delayed due to FL time. RO thinks I'm good until Sept for mammo; MO thought July. I see MO 6/5, won't know until then.
0 -
gigibee, your breast center must be abuzz with patients if it takes 3 hrs. from the diagnostic squashing to the radiology results. Mine has never taken more than an hour from "please check in" to "see you in 6 months." (Even the first dx spot compression mammo, followed by the ultrasound, talk with the radiologist, and making the biopsy appt., took under 2 hrs., though it felt like time was standing still).
0 -
thanks Cindy NY and ChiSandy I agree and hope they are just over estimating on the time.
0 -
The only bummer about going to Evanston Hospital & Kellogg Cancer Center instead of Skokie Hosp. is that Evanston/Kellogg charge for parking. If they charge for parking, ask for a discount coupon. If they don't offer discounts, then appeal to them to get you out faster.
0 -
Gigibee, each of my post-bc mammos has been followed an hour later by an appointment with my surgeon. Perhaps this is the reason they've posited three hours? He walks into the room and says, 'I've looked at your imaging and it looks perfectly fine to me." He follows, of course, with a remark about the radiologist being the final authority and we have to wait for him to pronounce the official all-clear. Also, the six-month mammo was explained to me to create a baseline record of what's what in the new post-surgical world. Not only is it nice that their expectation is that they won't find anything scary, but they are able to squish a little less aggressively, so still-tender areas are not agitated.
0 -
It seems like everyone is having their first mammogram 6 months out. I am having my first one a year later. Kaiser. Are they cutting corners to save money? I also had one three month check up and then the checkups are scheduled six months apart. It hasn't even been a year yet for me. I asked if the mammo would be diagnostic type with ultrasound and my oncologist said no, just a normal screening mammogram. Is this standard?
0 -
Shockedat48- saw my RO yesterday, she said my yearly mammo already scheduled for 10/1 is good. She said if I had one at 6 months after rads it would only be of the left LX breast. I'll see my MO on 6/5, see if she agrees or moves it up to July for 6 mths after finishing rads. I'm assuming I'll also have an ultrasound, as I have had every year, but its yet to be seen.
0 -
My first followup BS appt. & dx mammo of my R breast was supposed to be at 6 mos., but my BS was so heavily booked I had to wait 8 mos. 6 mos. after that, bilateral (L screening, R dx); 6 mos. after that, R dx; and now annual bilateral screening,
0 -
They ended up doing both breast mammos yesterday as I was only 2 months away from my annual on the left. I really appreciated that as I live quite a distance from the hospital. Holy wow was that uncomfortable. The did more extensive magnifications on the cancer side. Then I waited for results. She came out and said they want a few more pics, ugh, wth, then I go in and she asks me to take the left arm out so now we are talking about left breast and I am panicked, she says there are 2 radiologists looking and they saw something they wanted her to "turn into nothing" so she smashed me again and took a few more pics. Then I waited again and she told me she hoped to bring me the good letter, some time later she came out with the letter. It said I was good for 1 year on both. I go back tomorrow for my 6 mos surgical follow up and after that I think I am appt free for 4 months.
0 -
gigibee- such great news for you! HUGS
0 -
thank you Cindy NY, I heard a women crying in the dressing room, assuming she received bad news and I felt I had come full circle, my heart ached for her.
0 -
Great news, gigibee! It's always so awkward and quiet in the inner waiting room, all of us in our pink bathrobes; some waiting to get squashed, some waiting for the verdict, some for the next step.
0 -
Gigibee thanks for sharing wonderful news. When you were saying about your pain, my breast started acting up i kid you not. My appointment is next week with BS for follow up, and my breast is still pain/sensitive, let's see what the consult will achieve. Glad you are over this for now.
0 -
Gigibee - Yippee for the good news!
RE: Timing of 1st post surgical mammo - Surgery was 12/21/16 & mammo was not until 1/17/18 - almost 13 months later! Not sure why they waited so long, but it was all clear & no worse than any other mammo. Radiologist read mammo & gave me the good news & then had BS appointment immediately afterward.
0 -
Congratulations for everyone who has been getting all-clears on their follow up mammas.
Six months after the mammogram that sent me in to see the breast surgeon int he first place I had a second set of L/R mammos . It was right before surgery and after chemo; I had a dye enhanced mammogram which they are considering my new baseline. I had my lumpectomy in March 2017 and am not scheduled to have another set of mammos until February 2018. From here on in they will be dye enhanced.
I have appointments to see my MO, surgeon, and RO for follow up appointments over the months before these mammos. My hospital overall doesn't believe in too many scans after initial treatment if it is proved successful. They prefer to keep track of you by hands on exams by your onclogy team members. I get that and am going with it. At first I was a little nervous, thinking I'd want a PET scan every six months "just to make sure"! However, I've calmed down a bit, not unlike my initial reaction to diagnosis being "I want an immediate DMX" to praying that I'd be able to get a lumpectomy.
Good luck to everyone having their follow ups soon. I hope your anxiety is to a minimum and that all your results are CLEAR!!
0 -
Hi everyone, check up with BS was uneventful. Yes, he said it could take up to a year at least for the pain in the breast or sensitivity for the nipple to subside. Whatever. Def better, but it's there. He advised me to see a geneticist due to fam HX, the name he gave me also is a preventive MO. Probably in the summer. And images at the end of the summer. Wishing you all a peaceful weekend.
0 -
I met with my BS yesterday. She says everything looks great. She's good with mammo on 10/1; if MO wants me to have it sooner, she's ok with that as well. BS will see me again in a year.
I must have been relieved by the visit, as I got dressed and left the office. I had to call there today to get the appointment for next year! Such is life.
0 -
Hi just found the board,,,I have ductal invasive and just had my savi scout yesterday and will have surgery lumpectomy tuesday...Doctor says radiation to follow...not sure about anything more at this time. Tumor is 0.8cm....glad I found this board,,,support is everything.
0 -
Zarah57- it seems you're moving fast. Lumpectomy was my choice too. Your tumor at .8 is small; surgery should have you home the same day. You should bring with you on Tuesday an easy shirt to get into, button up, as you won't be lifting your arm up over your head for a while. And if you have a small pillow or even a travel blanket to roll up - to protect the area operated on from the seatbelt. Pick up pain meds before going home; easier to stay ahead of pain; even if you only use it for a day or two.
You will get through this. I'm sure others will chime in with more info before Tuesday, a lot of supportive women & men are here for you. Best wishes to you.
0 -
Hi, Zarah. Good luck luck with your procedure. I second everything that Cindy just said above.
One thing I'll add is if your doctor gives you a routine of gentle arm exercises to do after surgery, it's really helpful to do them faithfully and as soon as the doctor says you're up to it. (Mine wanted me to start the day after surgery!) It will really help in the long run so that you get full range of motion back asap.
You've got this - and we're all here for you!
0
