Terrified and need advise

HoneyBeaw

Found out on 12-5-16 that I had IDC, at first told no lymph node involved ( Pet Scan ) but now being told 1 is showing positive. Had mx on left breast and 2 lymph nodes removed on 12-26 and sch to start chemo on 1-16-17. Treatment plan as stands is 4 rounds of TC ( Docetaxal and Cytoxan). My worry is this enough to kill what cells that might have escaped . This whole thing has got me crazy nervious and Im usually the strong one . I have been staged at 2B and as I look at profiles I see so many other woman that have had so many more rounds of chemo then what they have me doing for same type. . Im just scared that this is not enough treatment . Dr did not mention radiation or any other treatment besides another PET or CAT scan after chemo. I know I have to calm down but right now its seems everyday its just over whelming with something new added.. . Any and all advise would be appreciated .

LisaAlissa

Hi HoneyBeaw!

What sorts of doctors have you seen? I'm guessing a surgeon (for the surgery, natch) and a medical oncologist (MO), since you have chemo scheduled. But if you haven't seen a radiation oncologist (RO), you may want to get a referral to one. It's the RO who can tell you what (if any) benefits/risks a course of radiation would involve for you, given your particular circumstances.

If your docs are working together as a team, they may be discussing your various treatment modalities together. If they aren't, you may ask them if there is a local tumor board who could consider your case and make recommendations. Alternatively, you might want to get a second opinion from an NCIC-designated cancer center near you for an additional recommendation on your course of treatment.

This would be the week to sort out whether you need to consider radiation perhaps before you begin chemo. But those are questions for your MO & RO.

HTH (and best wishes!)

LisaAlissa

labelle

On the other hand, I had a positive node and no chemo was recommended based on my oncotype score. Since you are having chemo, I don't think you need to worry that you are being undertreated. Radiation is pretty much standard treatment if you've had a lumpectomy. You might want to ask about it, but I'm almost positive it will be suggested for you at some point.

HoneyBeaw

LisaAlissa, radiation has not been mentioned to me at this point, BS said because I had a mx that he did not feel it would be part of the treatment. Yes my BS and Chemo Dr are working together

Dr did order the oncotype test that I requested but have not gotten back yet ,

labelle I had not idea you could have lymph node positive and no chemo, MO and BS both said because of the size of my mass 2.69 cm that Chemo was a must .

I know my nerves are getting the best of me and I have to calm down, just seems each day brings more bad news and I just want to make sure the treatment Im getting is going to take care of this mess. While I understand there is no guarantee I want to give it my best . To top this off I have fell off the smoking wagon and hating myself for this, such a mean nasty habit ......

Nick60F

hi HoneyBeaw

I think you might be pleasantly surprised and reassured if you had a quantitative view of your prognosis. Maybe your team have already done the stats with you but if not, Google NHS Predict and use the version 2 tool. Not everyone likes stats of course but myself and my wife find them helpful. Good luck with everything

Nick

BarredOwl

Hi HoneyBeaw:

As noted by others and in NCCN guidelines for Breast Cancer, radiation is commonly administered after chemotherapy, so you have some time in the next few weeks to investigate the question of radiation therapy.

In appropriate cases, post-mastectomy radiation may be considered or recommended. This is the area of expertise of Radiation Oncologists. Factors such as the number of positive lymph nodes, the size of the tumor, and size of surgical margins are considered, although other factors such as age, co-morbidities, and patient preference are considerations.

For example, if I am reading it correctly, under NCCN guidelines (Version 2.2016) applicable to Clinical Stage I, IIA, or IIB disease or T3, N1, M0 disease, following total mastectomy with surgical axillary staging, if 1-3 positive axillary nodes are found, the guidelines indicate:

"Strongly consider radiation therapy(r) to chest wall + infraclavicular region, supraclavicular area, internal mammary nodes, and any part of the axillary bed at risk. It is common for radiation therapy to follow chemotherapy when chemotherapy is indicated."

This recent ASCO/ SSO document takes a case-specific approach to the question of post-mastectomy radiation:

Recht (2016): "Postmastectomy Radiotherapy: An American Society of Clinical Oncology, American Society for Radiation Oncology, and Society of Surgical Oncology Focused Guideline Update"

http://ascopubs.org/doi/full/10.1200/JCO.2016.69.1188

(A pdf version is available under the PDF tab)

(These documents are not a substitute for case-specific expert professional advice from a Radiation Oncologist familiar with all the details of your case.)

In light of the above, I recommend that you request a referral to a Radiation Oncologist to obtain case-specific expert advice from a person whose area of expertise is Radiation Oncology (as opposed to the MO or surgeon). This will allow for the most informed decision-making, regardless of the ultimate decision.

Re your concerns about the chemotherapy regimen, I am not sure when you were initially diagnosed (by biopsy), and that is a factor in timing of chemotherapy. You could ask your Medical Oncologist what the recommended time-frame for initiation of chemotherapy is in your case (and why), and whether you have time to obtain a second opinion regarding chemotherapy questions. If there is time, you can seek a second opinion regarding particular regimen(s) and whether you are a good candidate for a test, such as OncotypeDX (a different question from mere eligibility).

The Oncotype test is not always recommended to node-positive patients (with 1-3 nodes and macromets). Similarly, the selection of a particular chemotherapy regimen involves the exercise of clinical judgement, as well as consideration of factors such as age and co-morbidities. Regardless of whether you seek a second opinion or not, you may find it helpful to have an additional discussion with your current Medical Oncologist, regarding why the Oncotype test was not recommended in your particular case, or why TC is recommended or is seen as preferred in your case, as opposed to some other regimen, such as anthracycline-containing regimen (e.g., AC (doxorubicin/cyclophosphamide) followed by paclitaxel).

If you pursue a second opinion, regarding LisaAlissa's recommendation, NCI-designated cancer centers are listed here. Be sure to confirm in-network:

https://www.cancer.gov/research/nci-role/cancer-centers/find

Best,

BarredOwl

leftduetostupidmods

HoneBeaw,

I was a IIB grade 2 with a 3 mm tumor in the sentinel lymph node, had 4 rounds of TC, one level of lymph nodes removed, and refused radiation. I celebrated my 7th cancerversary this past October. Yes, it's not undertreatment, that is how TC is usually prescribed.

HoneyBeaw

Thank you all for your replies, Chemo starts Monday and I just have to come to terms with all this . Not sure if fear and anxiety is a normal part of the process or me going nuts......While husband has been wonderful and trying be understanding Im sure my fear has got to be getting to him

msphil

hello sweetie i was diagnosed at 42 while preparing for our 2nd marriage i found lump in the shower had 3 month chemo before n after Lmast stage2 0\3 nodes rads and 5yrs on tamoxifen and Praise God im a 23 yr Survivor thus yr. So once treatment plan in effect n you start treatment u wont feel so Overwhelm. God Bless Us All. msphil Happy Blessed New Year. Stay Positive n Never give up Hope.

Mamasha

msphil, thanks for posting. Your 23 yrs is so helpful to us just starting