Not seeing a medical oncologist until after surgery

Well this is my story. I had a PET scan and my tumor was found, no lymph node involvement. I had a consultation with breast surgeon first, she felt confident there would be no lymph node involvement since there was no indication of cancer on the PET scan, however she would take one for biopsy. She recommended radiation and chemotherapy. No reconstruction, I smoke. She told me that my nipple would be puckered and droop a little, minimal scaring and breast would remain intact. I did have a follow up with the medical oncologist that insisted on chemotherapy. It was my personal decision to not have chemotherapy, after lots of prayers, consulting with friends that had cancer and the fact that I am a small woman, 110lbs, I felt that chemotherapy would not be the best choice for me. Chemotherapy destroys any cancer cells that may have traveled beyond the breast area, lymph nodes etc. Trust me she was NOT HAPPY with my decision, so be prepared for any opposition to your decisions, its your life, your body. I had the surgery, margins clear, no lymph node involvement. I had 21 treatments of radiation and the 22nd treatment concentrated on the tumor bed (area where tumor was). I have had my radiation oncology follow up for skin check. Mammogram in January 2023. I just found out I was supposed to have a check up with surgeon in November. I am not happy that they did not ensure this happened. I am transferring my care to a treatment center closer to home. I don't know if there is a set procedure on what doctor you see first. My advice is to ask as many questions as you can. Take someone with you during your appointments and a note pad to write everything down, including your questions, expected results of treatments and side effects.

I hope this helps.

Hi Liz,

I'm had pretty much the same DX as you, its in my other posts. I didn't get a Oncotype Score and I don't know what it is. I had 21 treatments of radiation and the 22nd treatment concentrated on the tumor bed (area where tumor was), I don't think I had entire breast radiated. I could be wrong, they machine rotated around a few times and beam sent at different angles. So I don't have an answer for that. I did not get burned. The doctor will prescribe a cream, to use. I did get pink but it cleared up. I don't know if is the norm and no one told me but the area that was radiated is now dark brown. My last treatment was July 13, 2022. I have olive skin and tan easy. The area is fading some, however, I wish it would go back to normal pigmentation. I don't know if that will ever happen. I did have sharp shooting pains, the doctor told me this was good, it meant my nerves were regenerating and that is a sign of healing. I don't get them as often. Cold and rainy days make me sore. I did go to PT since my range of motion in my arms was limited due to the lymph node removal. I have to be careful how I pick up heavy objects with that arm. I will continue a fitness program starting in January. I found out I prefer to sleep on my left side so if I sleep wrong, I'm sore. It does get better over time. I can't say you will have the same experience, I understand it is different for each of us. To be honest? For me radiation knocked me on my butt which lead to my legs and hips to atrophy. I fought to get PT to get them strong again. Eat lots of protein, get muscle milk and stay as active as you can. Again, some woman raised children and worked during treatment. I'm not where I want to be but than God, I'm not where I used to be.

Terri

You're welcome, Liz,

I just wish the doctors had been more upfront with me and I would have felt more prepared. I really had to deal with a lot of fear of the unknown on own. I hope this helps other women.

Terri

Keep using the cream they give you, the dr will give you regular skin checks. Trust me I have other health issues as well and the doctors want another CT Scan and a PET Scan, I'm putting my FOOT down, (I would really like to put my foot somewhere else but this a public post, LOL) I have had my yearly CT scan, I had a PET scan in March of this year. I have told the doctors NO. They want this doctor to look at the test, this doctor to look at the SAME TEST! How many doctors does it TAKE??? We wonder why health care is out of control and the system milks the insurance companies or drives the poor patient into bankruptcy. Ok, I'll get off my soap box, but it fires me up!mmThat and the fact that I doubt if the insurance will pay for more then one a year. I am fortunate and understand medial terminology, I worked in health care administration for 25 years. I question every thing a doctor does, why and what for. If I don't understand, I ask until I do. Don't google ask the professionals! BE your on adovcate, its your body and your life! Remember this, surgeons are trained to operate, physicians run tests and prescribe medications, radiologist read x-rays, counselors listen and give suggestions, psychiatrist prescribe medication. The best advice I can give any one in regards to any health care, educate yourself and stand up for yourself. I have friends that just say I do what ever the doctor says or I don't do what they want etc. That is their choice. As for me? I want to know everything, the who, what, when where and most important WHY!!!!

Terri

I think that is common. I had my first lumpectomy before I met with my medical oncologist. She had the information from the tumor they removed and was able to give me information based on that. Before the lumpectomy she wouldn't have known what we were working with.

One step at a time. One day at a time. You can do this!

Terri, I'm so thankful for you! Happy New Year! Please do NOT fear: Anxiety, and fear are part of the "plan" to keep us in the mainstream of the "medical industrial complex". Though they are mostly caring and believe in what they prescribe, I am hearing an echo chamber of scripted protocol, which I do not appreciate. FYI: I live in the far N. Dallas area of Texas. Here I am given statistics: "50% chance of BC not coming back without post-op radiation BUT 80-90% chance of NOT coming back WITH radiation post -op, BUT now I am supposed to see a Chemo Doc".

My treatment thus far has gone very well. However: I no longer accept many of the traditional protocols as I learn more through very careful research. Most Drs. are good and genuine, but they were taught mainstream, traditional methods, which very slowly evolve - such as use of the Savi Brachy reduces radiation, and less toxic or non-toxic forms of chemo. Some Drs. & Oncologists fortunately are moving towards more conservative ways of treating BC to conserve/preserve patient's quality of life. The "shadow" that is used to hang over us is fearing the "cancer will come back" if we don't follow the prescribed protocols... God did not give us a spirit of fear and I am praying for all going through this nightmare. NOTE: I am not qualified to give specific advice; my opinions are my own. Please do your own research and even under tremendous stress, ask the Lord (or friends if you're not a believer), to help you with critical thinking. Your life and future health and wellbeing are important .. There are literally 100+ forms of cancer. Some amount to nothing, some like BC or PC (in men) are scarier because they are hard to detect until they become symptomatic and may be harder to cure.

You asked about the "Savi" system: Just in my own words and experience in the last week:

The "Savi Brachytherapy" is a method of using a catheter device to deliver concentrated radiation into the breast only where the tumor once was, intending to kill off the cells that may have been "in transition" left behind after surgery. (Look up on DuckDuckGo if you want more detail) Qualifiers for this procedure are mostly Stage 1 or Stage 2 BC, where no lymph nodes are involved, very early stage. (Terri, you may have qualified for the procedure BUT it may not have been available in your area - has only been around since 2008-2011-(trial) approved but not yet everywhere in the US).

The applicator device (catheter) is implanted in an invasive office outpatient procedure, not pleasant- but the idea is to spare patients from having to endure so many rounds of radiation and reduces the "knocked me flat" effect of having 22+rounds by concentrating the radiation to a small area over fewer sessions. With the Savi system you get 2 rounds of radiation per day for no more than 2-5 days depending on MRI scan with a radiologist, at least 6 hours apart. Radiation "seeds" travel through tiny tubes in the device for approx. 10 min. then the seeds return to the small cart connecting to the implanted tubes. No radiation seeds are left in the patient and the patient is NOT radioactive whatsoever. The sessions are mostly pain free. I was fortunate enough to only need 3 rounds over 2 days, finished last Thurs. I am feeling exhausted and slight loss of appetite but I'm 68, otherwise healthy so should not last more than 2 weeks I am told.

After the last session the device (catheter)is removed, there is a small wound left where the catheter was, which will eventually heal, but has to be kept clean with a bandage antibiotic ointment, may drain slightly but it heals from the inside out so you don't want stitches or surgical tape to close it.

Bottom line: For me, I will likely meet with the chemo Dr. just to hear what he says. Now I feel like a mama bear, because I met several women while I was going through treatments who looked like a deer in the headlights. If my experience helps only one other person, then God has used this experience well.

Terri, please stay in touch and please keep up your excellent outreach to this community. PS Sorry this is so long.

Annie