Not seeing a medical oncologist until after surgery

twoguns

I saw a breast surgeon, a plastic surgeon, and a radiation oncologist in that order. Based on the info they provided me I opted for a lumpectomy with a lift and inter operative radiation. During surgery they discovered that not only had the cancer spread to the lymph nodes but that the tumor was too large for intra operative radiation. I will now need six weeks of whole breast radiation and will meet with a medical oncologist. Is that typical? Should I have met with a med oncologist before any of the other docs?

Truckincrazy1

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.

LNezhat

Hello, I am new to this group.

I had a lumpectomy and reconstruction on November 2. I just started 16 days of whole breast radiation this week. I am 65 years old. I had stage one with clear margins and nothing in the lymph nodes. My Oncotype score was 7.

I would really appreciate any and all advice that anyone could offer.

I am worried about radiation burns and side effects from radiation on my left breast.

Please send any tips,

Best,

Liz

Truckincrazy1

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

LNezhat

Terri,

Thank you for sharing with me. It really helps me to hear what others have experienced.

You had several great suggestions for the path to better health.

I hope you are feeling well,

Happy Holidays,

Liz

Truckincrazy1

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

LNezhat

Hi Terri,

It is so frustrating as there are so many things to consider and it seems to me that I deal with one issue and the doctor says how great and then refers me to yet another doctor for something else.

Sometimes I wonder if I should have had a bilateral.

I am worried about burning with radiation. I wish I had a better idea of how burned I will be and what others experienced.

bye,

Liz

Truckincrazy1

https://csn.cancer.org/discussion/comment/1702425#Comment_1702425

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

Annie_Hall

Terri, I have been reading your helpful comments to others and want to thank you for sharing. I had lumpectomy November29, 2022 for early stage 1 invasive BC. Pathology showed clean margins and no lymph node involvement. Just to be safe in case some onery cells decide to turn bad, I was approved for a somewhat newer form of radiation therapy called "Savi Brachy" which I start this week. It is a vastly condensed procedure in which a catheter device is inserted within the void left by the lumpectomy, through which radiation therapy passes through tiny tubes localized to the area where the cancer was found from the inside rather than through the entire breast. The sessions are brief, I am told 2 sessions two times per day, likely no more than three days. I am very frightened but I hate the idea of chemo and this seems to be my best option in terms of preventing a recurrence. Do you have any inside information on this? I start this coming Wednesday December 28th, 2022. Again many thanks for your insight and helping of other women in this forum.

Annie Hall

rachellynn99

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!

Truckincrazy1

https://csn.cancer.org/discussion/comment/1702591#Comment_1702591

Annie, sorry I didn't get a email notice of your post. Glad I was able to help. I don't know what "Savi Brachy" is. I finally got my CT Scan results, was scared breast cancer went to my lungs, long story short and after 2 days of hysteria I got my reports on my own and the radiologist compared the current scan to a 2 year old scan. I am beyond frustrated with medical care. I have my first follow up mammogram on 1/11/23 and I am terrified. I am with you, I didn't want chemo, I'm a small person and felt that chemo would just not be the right choice for me. I realize that somehow I will have to come to terms that cancer will be a shadow looming over me the rest of my life. I don't know what I will do if it comes back. I would like to learn more about Savi Brachy, I asked the oncologist about the type of radiation I had and unfortunately she didn't provide me with the answers I wanted. Keep in touch and let me know how this treatment is working for you. I had the same, lumpectomy, margins clear, however I had 22 rounds of radiation and for me it knocked me flat. I will see breast surgeon and oncologist for my 1 year check up. I just don't know what I will do if this comes back. I honestly don't. I am thankful for this board to get my thoughts out of my head and try to take one step at a time. It really gets difficult sometimes to do that, since I have anxiety as it is. Hope your treatment went well.

Terri

Annie_Hall

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

Truckincrazy1

https://csn.cancer.org/discussion/comment/1702728#Comment_1702728

Annie, thank you so much for your reply for some reason my anxiety is off the charts. I thought about stopping visiting this site as so many woman I are in a worse situation then I am in at the present moment. I agree 100 percent with you, this "shadow of fear that it will come back"is what the health care system is about. I swear if they don't stop sending me for more scans I'll scream. The last straw was last week. I get my yearly Lung CT scans, cause, yes I smoke. BC is not caused from smoking the oncologist told me, she said if they knew what caused it, they could prevent it. Anyway, the radiologist compared my current scan to a scan that was 2 years old. The pulmonologist had me terrified, said there was a shadow, if its cancer they will take good care of me. I couldn't get my records online like the last hospital, for 2 days I was hysterical with worry. Then I had to finally go to the hospital to pick up the records, no one on the phone told me I could go pick them up myself. When I realized their error I was like a volcano erupting. I had scanned and emailed the new pulmonologist my records 2 weeks prior to the current scan. HOW THE HELL CAN A DOCTOR MAKE THIS KIND OF A MISTAKE?? Sorry for my rant. I am so over this medical care and doctors chasing me around with as you say 'their protocols" and you are correct they are keeping me in the "medical industrial complex". I am at the end of my rope. Thank God I worked in the health insurance industry for 23 years, I understand medical terminology and I know how doctors and hospitals worked, I know how to read records and test results. I keep paper copies of all of my records and I challenge everything the doctors tell me. I research. I now keep all of my information with me in a folder and trust me when I see the next doctor I will be armed and prepared. It is now time for me to apologize for this long post.

I guess the bottom line is my advice is to stay on top of your health care, read, learn, don't take what the doctors tell you at face value. It's sickening what we go through. Thank you for your post, I am in rural Virginia, however UVA teaching hospital is an hour from me. I feel confident that I got the best care, just wish the doctors would have prepared me more in regards to side effects of radiation. As for now I am doing ok. Just dealing with the fall out of all of this medical care.

A friend asked me to ask God, he has a purpose for me on this earth, what is my purpose? She fought cancer years ago, it was all over her body. She is now 75. I hope my posts to help others. I am so angry, scared and tired.

After all of this, do you think one doctor said I'm sorry for the mistake? How many of their mistakes cause unnecessary medical care, stress or even death? Its heart breaking what we go through to keep our health.

Terri