Post Chemo Questions PS I'm DONE!!!!!

mjfromtx

Hi everyone! I am finally done with chemo! It has been a long road but I got through it with grit, stubborness, and some very kind nurses 'carrying' me through all the dehydration, nausea, illness, and fatigue. After six tx's of TAC it is over. Since I am a triple negative I do not have to take any oral medications. My oncologist will see me in three months. I get my port taken out in the next couple weeks, and I hope to return to work next week once I get rid of this nasty cold I picked up from someplace. I have some questions for those who have completed their treatments and follow up care:

1) Since nothing came up on my PET scan in September prior to my chemo and after the mastectomy, my onc dr is saying there is no need to recheck it since it was negative before, at least not now. I see her in three months for follow up blood work and a check up. I think she said I see her every three months for the first year, then every six for two years then once a year until five years (I think). Does this make sense to you?

2) She wants me to continue to have yearly mammograms and my onc surgeon will be in charge of following that (or my primary depending on what the onc surgeon wants me to do). How do I 'check' where there is no more breast, or do they just skip that and check for the right remaining breast?

3) I am reconnecting with my primary care physician, my dentist (my teeth are in need of cleaning or something after the chemo!!), my opthamologist for my usual yearly exam, and the onc surgeon to remove the port and see what kind of follow up he wants to do with me post mastectomy.

What have other onc drs done for your follow up? I know my situation is a bit different due to the fact that I am a triple negative so I don't need the usual care one gets when they are taking oral meds. Any advice would help me a bunch as I go into the 'new' and much welcome phase of my new life. Oh and I got my prosthesis last week and wow it makes such a big difference! I feel so much better with it and am very happy with it. It fits very well and I like the new bra too Thanks everyone for all your support while i struggled through the chemo these past months too:) MJ

Marcia527

Congratulations! Doesn't it
Congratulations! Doesn't it make you feel good to be done with chemo? I saw my oncologist every three months first and then every six and then every year. They would feel my surgery site for lumps even though it was flat and check the one I had left too.

Good going!

chenheart

Congrats!
Hooooray!!!!!!! Congrats on knowing that the light at the end of that tunnel is indeed Life After Cancer!!!

Most of us have had the same post-treatment schedule as you. I did not have my breast removed, I "only" had a lumpectomy, but the 3 month then 6 month Dr visit was what I had too. I was eventually released from my surgeon who at the 5 year mark was no longer my Dr! At first, I would see her every 6 months, and after 3 clean mammograms, became a "normal" patient with yearly mammograms. At the end of 5 years, she scheduled me for a bilateral MRI~ and when that came back clear, I was released as a patient. I see my oncologist every 8 months, and I have my hopefully FINAL appointment with him on February 2nd! I will be 6 years post treatment, and I finish 5 years of Arimidex this month!!

Well, this wasn't supposed to be about me~ sheesh! Just to let you know you are indeed on track, and we welcome you to this part of the journey!

(((((((HUGS)))))))
Claudia

Chellebug

My Experience
So glad you're through with chemo. I'm triple positive. Here's my experience with your questions:

1. I never had a PET scan, but I did have a bone scan when I had consistent back pain for 6 weeks. My doctors do not order any special tests once treatments over(except for blood draws on occasion). They only order special tests if there are symptoms present. My follow up visits are the same as your routine.

2. I don't have any breast tissue left. (Double mastectomy without reconstruction). I try to feel my flat chest every day to become familiar with the contour. That way if anything peculiar shows up I can let my doctors know. When I go in for doctor's visits they palpate all around the chest area, including areas where lymph nodes were and areas where lymph nodes still are.

3. You'll love your dentist appointment!!! I'm keeping my port for as long as I can because I can't have any blood drawn from either of my arms/hands. I still have some infusions with the clinical trial I am in (Zometa).

It sounds like our follow-ups are similar, though I am triple positive. (except I have to take an extra pill of Tamoxifen everyday). I remember getting my prostheses. It was a relief to have something to put on that looked so natural......now I only wear them to church and special occasions.

mimivac

Wow!
Congratulations on your "graduation"! Your follow-up schedule sounds typical and right, but I'm still in treatment so I can't give you much advice about that. I am triple negative, too and am going through 6 cycles of TAC (followed by 33 radiation treatments since I had a lumpectomy) just like you. Good to know someone else who has made it through!

I don't know how old you are, but since triple negative breast cancer tends to occur more often in women under 40, I'll tell you what my radiologist told me. she didn't think mammograms were very useful for me. Younger women tend to have denser breasts and mammograms can miss lumps in them. She is very keen on me having follow-up MRIs instead/in addition. Insurance will fight you on it since they are much more expensive than mammograms, though.

Anyway, I hope you do something great to celebrate this milestone.

Mimi

KathiM

I'm dancing for you!!!!
OVER and OUT!!! Start living the good life!!!

I went every 3 months for the first year. Then every 6 months. Now, 3 years post treatment, my oncologist is handing me back to my regular doctor. Mammo's every year. Colonoscopy's every 2 years (rectal was 6 months before my breast). I was ER/PR+, so I am taking Tamoxifen. And Actonel for my osteoporosis. That's it.

Hugs and congrats!!!!

Hugs, Kathi

Eil4186

can't keep the apts. straight....
I see my onc every three months for 3 years, then every six months for 5 years and every year for the next five years after that. I am in a clinical trial being supervised by my medical oncologist though and being followed more closely.

However my onc said that even without the trial he would have wanted to see me for several years.

Separate from the trial I saw my radiation onc 2x a year for 2 years and now have started yearly visits with her and I still see my surgeon 2x a year because I am still having yearly MRIs. He sees me once after my mammogram and again after the MRI.

I don't mind though because the doc. visits give me a sense of security.

mjfromtx

Eil4186 said:

can't keep the apts. straight....
I see my onc every three months for 3 years, then every six months for 5 years and every year for the next five years after that. I am in a clinical trial being supervised by my medical oncologist though and being followed more closely.

However my onc said that even without the trial he would have wanted to see me for several years.

Separate from the trial I saw my radiation onc 2x a year for 2 years and now have started yearly visits with her and I still see my surgeon 2x a year because I am still having yearly MRIs. He sees me once after my mammogram and again after the MRI.

I don't mind though because the doc. visits give me a sense of security.

You are all great with your
You are all great with your feedback!!! This helps me to feel more comfortable and on track with follow up. As for celebrating, I had one of my closest friends come here for 10 days during my last chemo and we had a chance to catch up since we haven't seen each other for about seven years. One of my other friends is coming for a week over the President's Day week so we get to visit too! Those are the big celebrations, but I am 'celebrating' everyday I feel better and am cancer free and done with the chemo! I love my work so I am really looking forward to getting back into a 'normal' routine again. When I went for physical therapy to get some help with very early stage lymphadema, I discovered that this particular office has free aerobics classes, and Tai Chi/yoga, specifically for women who have had breast cancer. They also offer a specialist in body massages for women who have lympademia (I discovered that if you want to get a body massage that it is best to work with a lymphadema massage specialist so they don't counteract the massage that one does to manage lymphadema). They only charge 50.00 an hour for massages which is about 25.00 less than the going rate here. I thought it might be worthwhile to 'rediscover' my new body through exercise, massage, yoga and Tai Chi. I am also rejoining Curves which I was involved in prior to coming to San Antonio and it is right across from where I live and work. So those are some of the 'celebrations' I am going to do, and also have made a pledge to not worry as much about work, and have more FUN!!! MJ

mmontero38

MJ, glad to see you posting
MJ, glad to see you posting again and done with chemo. You've had a really hard time with it and am glad it's over for you. I echo what everyone has said, the oncologist sent me for a mamo of my remaining breast and will schedule an MRI when it's my 1 year anniversary post chemo. For now, I'm on Tamoxifen for 4 more years and then we'll see. Hugs, Lili

inkblot

Congtars MJ!!! It feels so
Congtars MJ!!! It feels so good, doesn't it??? Enjoy the high to the max! Treat yourself as much as possible.

I had lumpectomy so was a bit different. Also, I was hormone neg, as you were, but Her2 +3. Meaning, an aggressive little lump. I saw my medical onc every 3 months for the first 2 years. My breast surgeon every 4 months for 18 months. My rad onc every 6 months for 2 years.

The time between visits became increaasingly longer and now I see my breast surgeon annually, my rad every 2 years and my medical onc annually. Initially, mammo's were every 6 months for the first 18 months. Now they're annually. I'm 7 years out...soon to be 8. So far, so good. In my experience, attitude and getting control of the fear was integral to my peace of mind, post treatment. It can feel strange not to be seeing the docs so frequently as when we were in active treatment, but it can also feel pretty darn good too. I enjoyed not being poked and prodded and questioned and having needle sticks! Initially though, I felt a bit strange and adrift. Seems most docs aren't much help in advising us in coping with the aftermath. LOL Makes sites like this all the more important in our recovery and healing process!!!

Like some others here, I never had a PetScan. I did have an extra set of magnified mammo's on the affected breast, for the first 2 years...done at the same time. Seems to be the typical protocol here in the Northeastern US, for mammo's.

None of my docs did labs, except for my medical onc. She did initially and still does a CBC, CMP, CA 27.29 (tumor marker test) The tumor markers...some docs don't utilize them as they're not 100% reliable and they can rise and/or fall due to causes other than cancer. They're a good tool in conjunction with other laboratory indicators and/or physical symptoms. On the flip side, with no other indicators of recurring cancer, mets or new cancer, a lot of expensive tests can be ordered, based solely on an increased CA27.29/ Like so many other things in medicine, there's the positives and the negatives. Just depends upon your doctors and your own preference.

Celebrate, enjoy your renewed health and bask in the sunshine of having treatment behind you!!!

Love, light & laughter,
Ink

RE

SO HAPPY FOR YOU!
WOOOOO WHOOOOO!!!! I am ever so happy for you and your completion of therapy! I am sending you a HIGH FIVE!

The schedule you listed as your post treatment plan is pretty much the same as mine was. I have only had a pet or mri if I had a problem or something seemed wrong.

Now that you have finished it all it is time to get back to enjoying yo life. I wish you many, many, many more years of a happy and healthy life!!

RE