Join Us

We are 224,981 members in 83 forums discussing 163,825 topics.

Help with Abbreviations

Topic: Oncotype wait

Forum: Diagnosed and Waiting for Test Results —

Share with and support others all waiting for test results from CAT scan, PET scan, Oncotype tests, Mammaprint, FISH, IHC, and other diagnostic tests.

Posted on: Nov 20, 2021 12:28AM - edited Nov 20, 2021 12:41AM by Emotional_Hubby

Emotional_Hubby wrote:

My wife has been waiting since 10-20 for the results of her oncotype and they just called and said won't be available until end of November . She is staunchly against chemo but said if it shows a great benefit she would be open to discussion .We have been reading over everything together and can't seem to figure out if she should just start preparing for chemo.

Her diagnosis was stage 2a with 1 out of 14 lymph nodes with a 7mm macromets.Nuclear grade 3 .Had 3 tumors in left breast .All margins clear .ER+ PR + 91-100% on 2 tumors with one having a Ki67 score of 12% and one with 15%.Her 3rd tumor was ER+ 91%-100 %PR + 61%-70% but had a ki67 score of 24%.She had a skin sparring BMX with immediate TE placement. She is perimenopausal but has appointment for consult on removing ovaries and uterus .Oh she is 53. We just are wondering and going crazy but at least we still have one another to go crazy with.Any insight would be helpful and we do know no one can predict these things but just like to hear others opinions or if anyone else had similar experiences.

More info just incase

SYNOPTIC REPORT: Breast - Invasive Carcinoma

Procedure: Total mastectomy

Specimen Laterality: Left

Tumor Site: Invasive Carcinoma: Upper inner quadrant

Tumor Size: Greatest dimension of largest invasive focus greater than 1 mm: 19 mm

Additional dimensions of largest invasive focus: 18 x 17 mm Histologic Type: Invasive carcinoma of no special type (ductal) Histologic Grade

Glandular (Acinar)/Tubular Differentiation: Score 3 Nuclear Pleomorphism: Score 3

Mitotic Rate: Score 3

Overall Grade: Grade 3

Tumor Focality: Multiple foci of invasive carcinoma Number of foci: 3

Ductal Carcinoma In Situ (DCIS): Present.

Positive for extensive intraductal component (EIC)

Size (Extent) of DCIS: Estimated size (extent) of DCIS (greatest dimension using gross and microscopic evaluation)

is at least (millimeter): 40 mm Additional dimensions (millimeters): 18 x 17 mm

Architectural Patterns: Solid, cribriform, comedo, clinging Nuclear Grade: Grade III

Necrosis: Present, central (expansive "comedo" necrosis)

Treatment Effect in the Breast: No known presurgical therapy Tumor Extension

Skin: Skin is present and uninvolved

Nipple: DCIS does not involve the nipple epidermis Skeletal Muscle: No skeletal muscle is present

Margins

Invasive Carcinoma Margins: Uninvolved by invasive carcinoma

Distance from closest margin: 4 mm (anterior) DCIS Margins: Uninvolved by DCIS

Specify closest margin: Anterior

Regional Lymph Nodes: Involved by tumor cells Total Number of Lymph Nodes Examined: 14

Number of Sentinel Lymph Nodes Examined: 1

Number of Lymph Nodes with Macrometastases (greater than 2 mm): 1

Number of Lymph Nodes with Micrometastases (greater than 0.2 mm to 2 mm and/or greater than 200 cells): 0 Number of Lymph Nodes with Isolated Tumor Cells (less than or equal to 0.2 mm and less than or equal to 200 cells):

0

Size of Largest Metastatic Deposit: 7 mm Extranodal Extension: Not identified

Treatment Effect in the Lymph Nodes: Not applicable Lymphovascular Invasion: Present

Dermal Lymphovascular Invasion: Not identified Pathologic Stage Classification (AJCC, 8th edition)

TNM Descriptors: m

Primary Tumor: pT1c

Regional Lymph Node Modifier: Not applicable Regional Lymph Nodes: pN1a

Distant Metastasis: Not applicable

Ancillary Studies: Previously reported

Microcalcifications: Present in invasive carcinoma, DCIS and non-neoplastic tissue

The synoptic report incorporates information from all relevant surgical material and includes all required data elements of the current CAP Cancer Protocol.



Log in to post a reply

Page 1 of 1 (30 results)

Posts 1 - 30 (30 total)

Log in to post a reply

Nov 20, 2021 04:32AM Sabbymama wrote:

I'm so sorry that you and your wife are facing this difficult decision. From my personal experience, it took about 5 weeks to get my Oncotype score back, which was super frustrating since I was initially told it would take 2 weeks. I also had IDC/DCIS, but with 4+ lymph nodes (3 micrometastases and one micrometastasis). My tumor was grade 2, KI-67 of 10%, and a low Oncotype of only 12. However, due to the 7cm size of my tumor, my age (50 at time of diagnosis), and the number of lymph nodes involved, my oncologist felt that chemotherapy was necessary and I reluctantly agreed at the time. I also had radiation therapy upon completion of the chemo based solely on the number of lymph nodes and the LVI/ENE involved. My rad oncologist said if I had less than 3, he wouldn't necessarily recommend it, but in my case, he thought it prudent.

If I'm being honest, I don't regret my decision to throw every possible treatment at this cancer. Chemo was tough, but I hope it worked. I'm on hormone blockers for the next 10 years. Ultimately I still worry that it has spread and I lose sleep most nights with worry, but at least I know that I have done everything medically possible to halt its progression and that is somewhat comforting. Given her intermediate Ki-67 scores and the fairly aggressive nature of her tumor, they may recommend chemo and that is a tough decision to make. If your wife is lucky enough to have a caring husband there to support her through the difficulties of chemotherapy, she will do well and recover better. Whatever happens, having you by her side through makes all these changes easier to deal with. Should she choose to pursue chemo, joining one of the chemo support groups on these community boards is a real lifesaver too. They are so informative and it is so helpful to have others at the same point of their journey to chat with. Best of luck to you both!

Cheers,

Sabbymama

Dx 3/2/2020, DCIS/IDC, Left, 6cm+, Stage IIIA, Grade 2, 4/22 nodes, ER+/PR+, HER2- (FISH) Surgery 4/10/2020 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy; Reconstruction (left): Tissue expander placement Chemotherapy 5/25/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 9/14/2020 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 10/12/2020 Arimidex (anastrozole) Surgery 6/10/2021 Prophylactic mastectomy: Right
Log in to post a reply

Nov 20, 2021 07:53AM - edited Nov 20, 2021 07:56AM by Emotional_Hubby

Thank you for the reply. The biggest tumor I believe was 1.9cm . I try to get her to come on here and talk or just let out her frustrations but she is not ready, she tells me to post or ask and I would never pressure my wife to do anything in these trying times as letting her cope and come to terms on her own time just feels right.She was so glad October is over and also almost hates watching tv with all the commercials about BC.She won't even say cancer so she calls it the cooties .The MO did tell her it would be only 4 rounds of chemo if the oncotype comes back high because she fits into the category of the Monarch trials so she only would need 2 chemo drugs can't remember which two off the top my head. Her radiation oncologist already said 5 weeks of proton beam radiation and the appointments are already scheduled for it but we are stuck until onco score comes back as I drive her 12 and 1/2 hr one way to receive her treatments.So it's just frustrating cause I don't know if we need to get hotel for 3 months of chemo plus 5 weeks of radiation etc.Also how long after chemo before you start radiation.The MO try to convince my wife that chemo isn't a specialty and any BC center can administer it and she became so distraught she straight up told them if they don't do it at the current facility she would just stop everything treatment wise. After the MO and the fellow listened to why she was so upset and why she has so much distrust in the facilities around were we live they apologized and agreed she needed to get it done there if score comes back high.It just sucks cause like you we were told 2 weeks for test results and now we waiting 5.Sorry for rant

Log in to post a reply

Nov 20, 2021 08:06AM kathabus wrote:

Its really so hard to know in these situations without the oncotype score. My diagnosis was the same in SOME ways. I only had one tumor (2.5cm) and I was grade 2, but I had 8mm macromet in one lymph node and high ER/PR. I was 43, premenopausal:

I would have had chemo if my oncotype was high, but it wound up being low. We went with hysterectomy/oopherectomy, aggressive radiation and an Aromatase inhibitor. Personally, with the positive lymph node and my young age I 💯 prepared for chemo before the test came back. I hope you get the results soon. Good luck to your wife as she navigates through everything

Diagnosed at 43 Years Old, Oncotype DX 10 Dx 2/17/2020, IDC, Right, 2cm, Stage IB, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 3/23/2020 Lumpectomy; Lymph node removal Radiation Therapy 5/14/2020 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 7/20/2020 Prophylactic ovary removal Hormonal Therapy 8/20/2020 Femara (letrozole)
Log in to post a reply

Nov 20, 2021 09:19AM - edited Nov 20, 2021 10:19AM by wondering44

Emotional_Hubby

I was diagnosed at age 44. The Oncotype took approximately two weeks to get back.

IDC 8.5 cm in greatest extent with EIC - DCIS major component within the area solid and cribriform types with central necrosis

Microcalcifications: Present in invasive carcinoma, DCIS and non-neoplastic tissue

PR+ >98%

ER+ >95%

Her2 negative

Ki-67 Unfavorable

nodes negative - 0/3 nodes

Oncotype score 8 - Usually done with pathology from MX. I requested mine done with biopsy that confirmed diagnosis done on 07/08. The BMX was not done until 08/18 which had the Oncotpye score ordered. I thought it was unreasonable to wait that long. The BS said I had to wait until the MX. My MO ordered the Oncoptype from my original biopsy at my request. She explained that is it typically done during the surgery but said no reason not to do it from the biopsy since I asked her to do it. I got the Oncoptype back before the BMX surgery.

Treatment plan:

BMX - nipple-sparing with existing implant left in place for later reconstruction.

Radiation six weeks

Perimenopausal - MO opted to do monthly shots to shut down ovaries rather than removal. Letrozole for five years.

No chemo due to Oncoptype score and no node involvement.

The waiting for results is torture. It is expected to think through every scenario while you wait. My husband kept a smile on his face through each wait to alleviate my stress. I asked him to join a support group to help him through the process of going through my cancer. He worries every day about treatment and recurrence. We reached a point that we roll with the cancer and talked about what decisions to make throughout each part of treatment with the turns in the road that came with a new result. He completely changed our food intake to Organic only to help with my diet change from the hormones put in foods. He gained weight and I've lost 23 pounds. We make time to travel together since I was always too busy to do it before cancer. We dance together like we did when we first met (no music needed). The positive in my cancer is that we now understand the importance to truly appreciate each other and have as many "good" days as we can while we have days to do it. He has been invaluable to help me get through the hard days and the good days.

The challenge you two face is difficult. Going through the "what if" scenarios while waiting on results is terrifying. The emotional and physical effects of the cancer rollercoaster ride are harsh. It does eventually get better once all of the results are in and a firm treatment plan is in place. I send warm thoughts to you and your wife to get good results from her treatment plan.



"I don't get to control my cancer. I do get to control how I choose to live each day with cancer." - Me Dx 7/8/2021, DCIS, Right, 1cm, Stage 0, Grade 3 Dx 7/8/2021, IDC, Right, 2cm, Stage IB, Grade 2, ER+/PR+, HER2- (FISH) Surgery 8/18/2021 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right Dx 8/23/2021, IDC, Right, 6cm+, Stage IIB, Grade 3, 0/4 nodes, ER+/PR+ Dx 8/23/2021, DCIS, Right, 6cm+, Stage 0, Grade 3, 0/4 nodes Radiation Therapy Whole-breast: Breast, Lymph nodes
Log in to post a reply

Nov 20, 2021 09:57AM - edited Nov 20, 2021 09:59AM by Emotional_Hubby

Thank you for the replies.Yes the one silver lining in all of this is how much closer this has made my wife and I.We we're always close and outgoing and always made time for vacations but now it just seems different.I now appreciate every second of the day I have with her For instance on vacation I would sometimes spend mass amounts of time watching sports and playing on my phone I now see that was not what I shoulda been doing.I have also came to realize how much stuff she did for me before all this.I never realized the workload my wife had before diagnosis and treatment.She had a job ,cut the grass ,did laundry ,cleaned house, took care of pets ,cooked,etc.Now that she struggles to do anything because of neuropathy well they actually leaning on a different diagnosis like buergers or reynauds I have to pickup everything.I have new admiration for my wife who never complained about doing any of it but now complains that she can't do it and keeps apologizes to me for me having to do it. It sucks it took this for me to see this but I now know how much my wife really helped me .I always remember to thank her for anything she does and also not only tell her how much I love her but I make sure my actions also show how much I need her and love her. We are jokesters and try not to dwell.Even at the appointments all the nurses and Doctors and staff love when they see us.She calls me her ESA short for emotional support animal lol.She actually had a nurse looking around for a animal when she asks if her emotional support animal can come in with her .They then bust out laughing once she says it's her husband. Also the fun times I've had just trying to figure out what water temp for which clothes when doing wash makes me laugh.

Log in to post a reply

Nov 20, 2021 10:01AM ThreeTree wrote:

Emotional_Hubby - First, I just want to say I love seeing husbands like you on this forum. I know there are many more out there, and you all are just such a boon to your wives. Next, I want to say that while my situation was a bit different and did not involve oncotype, I did have left sided proton radiation and am glad that I did (I had to have neoadjuvant chemo due to large tumor). My center recommended "regular" radiation (photon), but every morning when I went for chemo, I was parked directly across from the proton therapy center, so I looked into it on my own and arranged, on my own, to do that instead of regular photon radiation. I'm getting to my point here, and that is about your long drive and the issue of whether to get a hotel or not. I was very fortunate in that I live just 10-15 minutes away from a proton center and I was getting the rest of my treatment at the same medical location as the center. I was able to drive myself to and from everything with time to spare. When I was getting my proton treatment however, I ran into all sorts of people from other states. I live in Washington and there were people who had travelled here not only from far away places in this state, but also from Hawaii, Idaho, and Alaska if I remember. They were all staying in hotels of course, except for one couple who lived east of the mountains here and they were doing an all day drive over the mountains every day! I got the impression that some had their hotels paid for by their insurance, and it was because their providers had argued that proton therapy was medically necessary, so you might want to look into getting a hotel covered via insurance.

Also, proton therapy is much more expensive than standard photon radiation. I think I was told that the actual flat out cost was around $65,000 for all the sessions. They said that most private insurances decline to pay for it saying that it is still considered "experimental" and not standard treatment. I was 67 at the time and had become Medicare eligible, so I immediately signed up for Medicare, because I was told they would cover it, and they did. I had private insurance through work that did indeed decline to pay as I was told they would. Months later, after the hospital made an automatic appeal and after Medicare had already paid, the private work insurance said that after reviewing my records and seeing how serious everything was, they changed their minds (great ...). There is a time factor and with private insurance most cannot wait long enough for the initial private insurance decision and then appeals before they need the treatment. They've got to get started within a certain time from after surgery or chemo, as is the case.

Your wife is not of Medicare age, so you might really want to look into how you can get this paid for unless you are just personally able and can swing it. I was automatically given an appointment with a financial person at the center to go over how this would get paid for. In your case, you appear to have the oncologist and radiologist already in your corner re protons, something I did not have. In addition to the financial person telling me that almost all private insurance companies will automatically decline to pay, but that Medicare will cover it, they told me that if all else failed and I could not get any insurance coverage, I could have it done for a flat $10,000 out of pocket. That's still "not nothin'", but it was far better than $65,000. My Medicare co-pay wound up being $7,000 and a supplement that I bought covered that, so I was very fortunate in that I live a short drive away and wound up getting it all covered, but do check into the financial side beforehand. It is quite a deal, especially if you need to do the hotel thing. As above though, not only am I glad I was able to do get it covered, I'm glad I got the protons instead of photons and have absolutely no regrets.

Just my two cents re the chemo also: If it was me, I'd probably go for the chemo if it is recommended. It is no fun by any means, but it is "doable" and you get through it, and it adds a good amount of extra protection regarding the possibility of distant metastases.

(Sorry if I've rambled a bit, haven't been up very long and just started the morning coffee. That combined with Letrozole brain fog, makes me a bit mentally disorganized.)

Log in to post a reply

Nov 20, 2021 10:11AM - edited Nov 20, 2021 10:32AM by Emotional_Hubby

As far as insurance my wife is covered as long as The BC center says it's necessary .We are on a Center of Excellence program that pays all treatment related to BC with no deductible or out of pocket cost.They also pay for all my travel and hotels and a per diem for food.They have already paid close to 200k it was like 150k just for the surgery and TE placements.My wife has a fear of flying so I drive her and they pay me .58 cents a mile to do it. Honestly I was shocked at how much this stuff cost.But what really irked me was when I was looking at the itemized bill for surgery was the .50 cent charge for Tylenol .Idk why it just set me off.

And also because proton is considered a specialty procedure my COE definitely covers it

Log in to post a reply

Nov 20, 2021 11:02AM ThreeTree wrote:

Wow, you've got great insurance. If everyone could be so lucky! Also, loved the ESA story!

All the luck in the world to you both.

Log in to post a reply

Nov 20, 2021 11:53AM jhl wrote:

Hi Emotional,

In your first sentence, you mention 'they called'. Who is 'they'? I ask because Genomic Health, the company that runs the OncotypeIQ test indicates results are normally available two weeks after they (Genomic Health) receive the tissue sample. You and your wife are able to call them and receive the results yourself which might allay some of your frustrations. Here is their contact information and the link to the website which is very user friendly: https://www.oncotypeiq.com/en-US/contact/contact-u... I encourage you to call on Monday.

We are heading into a holiday week and I imagine your treatment facility just doesn't have the appointment space to get your wife in. However, that should not prevent you from knowing what the actual score is. Personally, I believe each of us needs time to process these results and in your case, specifically, you have lots of planning you might need to do.

I wish the very best for you & your wife,

Jane

Dx 11/15/2019, IDC: Cribriform, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- (FISH)
Log in to post a reply

Nov 20, 2021 01:15PM Emotional_Hubby wrote:

It was the MO who called and said when it would be available. The results with the MO is just suppose to be a telehealth thing anyway as we said that would be ok instead of driving way out there just to hear a score .Definitely frustrating.We almost feel like they have the results but are waiting on her to completely heal from the BMX before hammering her with bad news. But we have told all her medical providers we don’t like sugar coated BS just shoot straight with us.Especially after all the junk they filled her head with when she was first diagnosed by the first facility that we eventually left as she immediately wanted a BMX but they were like oh it’s early and small we think a lumpectomy would fit you fine.She went through like 9 biopsies to try and get a lumpectomy just to be let down and told your no longer a candidate for it do to multi focal tumors .Then after that they filled her head with a Goldilocks procedure just to let her down again and say your not a candidate because how much skin the surgeon needs to take from left side.Those two things upset my wife so much it crushed her and even me who my wife has always known to be a very strong willed person who hardly ever cried so it scared her and I promised her I won’t let her be disappointed like that again and will make sure her voice is always heard and her decisions not swayed by over zealous doctors. And her choices are hers and I back her 110% right or wrong.I will be calling Monday .We are going to a well known place in Rochester MN

Log in to post a reply

Nov 20, 2021 02:14PM ThreeTree wrote:

Emotional_Hubby - Does the medical facility you go to offer anything like MyChart, i.e. a "patient portal"? There is a law now this year that says results of tests have to be posted immediately after they are ready. There's no need to wait for a doctor to call anymore, unless that's your preference. If you have access to something like MyChart you can just log on and see them as soon as they've been produced.

Log in to post a reply

Nov 20, 2021 02:15PM exbrnxgrl wrote:

emotionalhubby,

Clearly none of us were with your wife during her earlier experiences and I am not trying to defend her medical as I lack the information and knowledge to do that, I did want to say that there is always the chance that things don’t as hoped for or planned during bc treatment. No doctor should “guarantee” an outcome though they should be honest about what could happen. There are many variations in individuals, their anatomy and their bc and sometimes unexpected things just happen. Yes, it is important that you wife’s voice always be heard but I think it might be close to impossible to promise no disappointment again. Since you’re not in favor of sugar coating things understanding the possibility that things can and do go wrong is important to understand. Most times things go well but you just never know. Take care

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
Log in to post a reply

Nov 20, 2021 02:20PM Emotional_Hubby wrote:

Sorry words came out wrong.I shouldn’t say promised not to be disappointed.But more along the lines of just having her more prepared for future failures and making sure she has all the facts not just the ones people want her to hear.In this journey so far ,her words not mine she has told me it just feels like the drs have built her hope up just to be let down time and time again.So now she goes in with a more pessimistic attitude when comes to results.

Log in to post a reply

Nov 20, 2021 02:34PM Emotional_Hubby wrote:

Yes we have the Mayo app and also my chart as that’s what Cleveland clinic used.The results seem delayed though.Also I noticed they did not release the biopsy results until after they called us I know that for sure.So they definitely not releasing info as soon as it’s finalized.If what I read is somewhat true and the Oncotype DX is in concordance with ki67 then that might also be the delay.Because at the highest % ki67 was 24 .And with it being that close they might not know just what to recommend.But what also confuses me is the notes the MO left.I thought 26 was cutoff. Either way we wait lol.But here is what the MO said.



Assessment / PLAN

#1 ER-positive (>90%), PR-positive (>90%), HER-2 negative, multifocal grade III invasive ductal carcinoma of the LEFT breast status post bilateral mastectomy , pT1c,pN1a, Ki-67 of 12-24%, Oncotype pending

#2 Negative germline genetic testing

#3 Perimenopausal

#4 Former smoker

#5 Peripheral neuropathy with suspicion for underlying either Buerger or Raynaud's phenomena

Ms. Wife is seen in medical oncology. Her surgical specimen identified multifocal grade 3 invasive ductal carcinoma measuring 1.9 x 1.8 cm. DCIS was present as well spanning 4 cm. One of 14 lymph nodes was positive, with a 7 mm deposit. No extra nodal extension was identified. An Oncotype was sent to me anticipate having the results hopefully next week. We shared with her that there is reasonable anticipation based on her grade and Ki-67, that the Oncotype will return high showing the chemotherapy benefit. We outlined what this recommendation may look like, realizing that the results the Oncotype may change our recommendation.

If the Oncotype score is above 26, particularly if it is above 30, we would recommend adjuvant chemotherapy. For ER positive, HER2 negative breast cancer that is node positive, we note that the anthracycline containing regimen is slightly more beneficial with 2% improvement inf 4 year IDFS based on the Blum JCO analysis of the ABC trials. In her situation, I would view docetaxel/cyclophosphamide (TC x 4-6) cycles as a reasonable alternative and likely what I would choose here if we are able to maximize endocrine therapy with aromatase inhibitor, zoledronic acid, and abemaciclib as done in monarchE study. With a Ki-67 >20%, she meets the recently FDA approved criteria for this.

If her Oncotype is low, we would do adjuvant endocrine therapy opting for aromatase inhibitor with ovarian function suppression. She is keen on hysterectomy and oophorectomy for managing fibroids and this could offer some breast cancer benefit as well (particularly if we are not doing chemotherapy). Zoledronic acid and abemaciclib remain reasonable options in this scenario.


Any input is appreciated.We kinda just like the back and forth and knowledge everyone has bestowed upon us on this forum.Once again thank you from my wife and I



Log in to post a reply

Nov 20, 2021 02:34PM exbrnxgrl wrote:

Doctors work on human bodies and they are human as well. If the hopeful scenario they presented didn’t work out that’s simply because nothing is guaranteed. When I had my port installed I knew the chances of a lung puncture during the procedure were 1%. In going over these things my surgeon and I kind of laughed about this incredibly low incident possibility. So, the port was installed and I went home. Two weeks later I was rushed to the ER with a complete pneumothorax of the right lung. I spent a week in hospital, had 3 separate chest tube insertions and spent a month at home with a portable chest tube. The chances of this happening was less than 1%! Did the doctors get my hopes up about everything being fine during the procedure? No, not at all but there was no reason to emphasize an very rare side effect. We are all aware that sh*t happens but it does stink when it does happen. Take care.

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
Log in to post a reply

Nov 20, 2021 02:45PM - edited Nov 20, 2021 02:47PM by Emotional_Hubby

Oh we get nothing is ever guaranteed.But for instance when she had her RO consult and he told her there is a very low risk of developing a different cancer from it she actually was relieved that he told her that and thanked him and even said that's the kind of info she wants from her drs.All she wants is all the facts not just the picked over facts.And even though she has some doubts about her MO she adores him and her as he has a woman doing a fellowship who she sees also.They not only told her all the facts they even were very educated on all the trials and whatnot .Ponderx Taylorx Monarch etc. The point being was the first RO she spoke with never mentioned the info about secondary cancer and made it seem like a cake walk.

Log in to post a reply

Nov 20, 2021 03:05PM - edited Nov 20, 2021 03:06PM by exbrnxgrl

Oh my! Cancer and a cakewalk? Doesn't sound like bc to me. I can understand your wife's feelings. I switched mo's almost immediately after my dx as my first mo came very close to patting me on the head and saying, “Don't worry about it little lady…" Definitely not the doc for me.

Bilateral mx 9/7/11 with one step ns reconstruction. As of 11/21/11, 2cm met to upper left femur Dx 7/8/2011, IDC, Left, 4cm, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Surgery 9/7/2011 Lymph node removal: Left; Mastectomy: Left, Right; Reconstruction (left); Reconstruction (right) Dx 11/2011, IDC, Left, 4cm, Stage IV, Grade 1, 1/15 nodes, mets, ER+/PR+, HER2- Hormonal Therapy 11/21/2011 Arimidex (anastrozole) Radiation Therapy 11/21/2011 Bone Hormonal Therapy 6/19/2014 Femara (letrozole) Hormonal Therapy Aromasin (exemestane)
Log in to post a reply

Nov 20, 2021 06:19PM jhl wrote:

ThreeTree,

Just to clarify, that law applies to results & notes that are generated by the healthcare facility that does the tests/notes. The Oncotype is done by an outside facility so those results are not posted to the patient portal. On the healthcare facility side, those results are 'imported' and it goes into a tab for outside lab/imaging which is only available to providers in the health system. One would be able to see the result if the MO noted it on a progress note but Emotional would not be able to see it on the patient side of the portal.

However, Genomic Health is very patient friendly and is willing to provide the results to patients themselves.

Be well,

Jane

Dx 11/15/2019, IDC: Cribriform, Right, <1cm, Stage IA, Grade 2, 0/2 nodes, ER+/PR+, HER2- (FISH)
Log in to post a reply

Nov 20, 2021 07:01PM ThreeTree wrote:

Jane/jhl - Thanks for that info - it's good to know!

Have a nice Thanksgving!

Log in to post a reply

Nov 20, 2021 07:58PM edwards750 wrote:

What a wonderful and caring husband you are! I’m sure your wife appreciates and loves you for being so involved during her medical issues.

My two cents worth - I had one of the “I didn’t expect this to be the case” issues from my BS. My path report after my lumpectomy showed a micromet in my SN. He was surprised, I was devastated. Ordinarily it might warrant chemo but my Oncologist ordered the Oncotype test to see if chemo would be a benefit. Thank God she did. The results did come back in 2 weeks and I had a score of 11 with an 8% chance if a recurrence. I was DX in 2011 with IDC, Stage 1b, Grade 1.

During that time I had occasion to call to the staffat Genomic Labs about an insurance issue and I agree they were very nice and helpful.

Hoping and praying for good results for your wife. Keep the faith.

Diane

Log in to post a reply

Nov 20, 2021 08:35PM AliceBastable wrote:

My situation was very much like that of edwards750, where a sentinel node micromet was found unexpectedly - too small to show on any of the pre-op imaging, but there in the pathology. My RO had told me 22 sessions, very basic early stage treatment. When I went for my mapping session, I was told 33 sessions. I was pretty mad because I'd had the lumpectomy, a re-excision, and another surgery for an unrelated cancer, all within three months, and I wanted to be OVER with all things medical. The RO and I had a tense and testy conversation, but he explained that the micromet changed the initial plan and he had to follow the standard longer treatment protocol. Also, my MO had assumed chemo based on the pathology, and planned a port placement during the re-excision. We didn't find out until the day before that surgery that my Oncotype score came back low enough for no chemo, which surprised everyone.

All this to say, none of them are psychic and nobody is usually trying to make the information sunnier or grimmer, it's just there are a lot of unforeseeable variables.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Boring. Hope it stays that way. Dx 5/2018, ILC, Left, 2cm, Stage IA, Grade 1, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
Log in to post a reply

Nov 21, 2021 03:43AM Sabbymama wrote:

If your wife's MO does suggest the four rounds of TC (Taxotere and Cytoxan), I would suggest reading through the "Anyone on just Taxotere and Cytoxan?" thread in the community pages. I went through 4 rounds of this regimen and the ladies in that forum really have a wealth of information and helped me not only mentally prepare but had great suggestions for things to have on hand that would help along the way. Even if your wife is not ready to engage in conversation, she could read through the discussions to help her prepare for chemo. Each round is administered 3 weeks apart so I suppose you could travel to your infusion center just prior to the treatment if you didn't want to stay there for the whole 3 months. I found that I felt physically fine on the infusion day and the following day. My tough days would start once the Neulasta injection was done and days 4-8 were hellish. If you were able to travel home prior to that injection (if your wife qualified for an auto-injector), she would be able to recover at home if that would be more comfortable for her? I usually started to feel good again a few days before the next infusion.

If she does need to move forward with TC, I would recommend getting the port. My MO left the decision to me and I opted not to get a port and with my first infusion, I had the Cytoxan break through my vein and "leak" into my surrounding tissue. It caused my skin to blister up and was pretty scary, but luckily it healed in a few weeks and I have only a mild scar now. The port was placed a few days before my second infusion.

Sadly with the TC, in my case, my hair came out about a week prior to my second infusion. That might be a very difficult process for your wife to cope with. It was devastating for me even though I thought I had prepared myself for that eventuality. There are great tips to deal with this on that forum as well and I found this video very helpful

Hopefully, that score will be low and she won't need it, but just in case ;). Luckily, it doesn't look like she had any extranodal extension or lymphovascular invasion and that is a positive thing! Thinking of you both and sending positive vibes!

Dx 3/2/2020, DCIS/IDC, Left, 6cm+, Stage IIIA, Grade 2, 4/22 nodes, ER+/PR+, HER2- (FISH) Surgery 4/10/2020 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy; Reconstruction (left): Tissue expander placement Chemotherapy 5/25/2020 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Radiation Therapy 9/14/2020 Whole-breast: Breast, Lymph nodes, Chest wall Hormonal Therapy 10/12/2020 Arimidex (anastrozole) Surgery 6/10/2021 Prophylactic mastectomy: Right
Log in to post a reply

Nov 21, 2021 04:54AM Emotional_Hubby wrote:

Thank you for all the replies to this thread.Have a Happy Thanksgiving everyone.

Log in to post a reply

Nov 21, 2021 07:46AM - edited Nov 21, 2021 08:23AM by wondering44

Emotional_H,

My Ki-67 was higher than your wife's Ki-67. Perhaps that was why I was told before surgery I would end up doing chemo. Once the Oncotype and surgery pathology came back, two MO's said no chemo. They said even if the MRI, ultrasound, mammogram, and biopsy had diagnosed the tumor correctly before surgery and I had done chemo to reduce the size of cancer before surgery, it probably would not have benefited me with an Oncotype score of 8. I'd have ended up doing chemo with little to no changes to cancer and put my body through a mess of treatment that risked long-term damage to my body. As ridiculous as I thought it was when I didn't get the correct diagnosis before surgery to go ahead and fight the tumor size, I now consider myself lucky to have skipped chemo.

It sounds like you guys have the option to ask the MO for CT/PET scans to confirm cancer has not spread beyond the macromets with your health insurance coverage without concern for out-of-pocket expenses. I asked my MO for the additional scans (I mentioned I had one spot of pain in my lungs during exercise), and she happily ordered them. It was a huge relief to get the scan results back showing no evidence of metastatic disease.

There is also a form that your wife can sign to allow you to discuss treatment directly with her medical team. I did it for my husband. It helped me have him ask the doctors questions while I was trying to wrap my brain around all of it.

"I don't get to control my cancer. I do get to control how I choose to live each day with cancer." - Me Dx 7/8/2021, DCIS, Right, 1cm, Stage 0, Grade 3 Dx 7/8/2021, IDC, Right, 2cm, Stage IB, Grade 2, ER+/PR+, HER2- (FISH) Surgery 8/18/2021 Lymph node removal: Right, Sentinel, Underarm/Axillary; Mastectomy: Right Dx 8/23/2021, IDC, Right, 6cm+, Stage IIB, Grade 3, 0/4 nodes, ER+/PR+ Dx 8/23/2021, DCIS, Right, 6cm+, Stage 0, Grade 3, 0/4 nodes Radiation Therapy Whole-breast: Breast, Lymph nodes
Log in to post a reply

Nov 21, 2021 09:44AM Emotional_Hubby wrote:

Thank you for the info.I am already added and her care team mainly calls and talks to me. She already had the PET/CT scans and all that before surgery. Here is that info.And also is why she wants the other surgery to remove ovaries and uterus

IMPRESSION:

1. FDG avid left breast lesion corresponding to biopsy-proven invasive ductal carcinoma. Mild FDG activity within left axillary lymph node.

2. No definitive FDG avid hepatic or bone metastasis.

3. Indeterminate focal FDG uptake in the left uterus. Correlation with pelvic ultrasound is recommended for further evaluation.

EXAM: PET CT SKULL TO THIGH FDG

Serum glucose at time of F-18 FDG injection was 92 mg/dL. Patient followed standard dietary/fasting requirements for this exam.

RADIOPHARMACEUTICAL/MEDS:

Route: intravenous

fludeoxyglucose F 18 injection USP (FDG F-18),15.09 millicurie

TECHNIQUE: F-18 FDG PET/CT scan was performed from the vertex through the upper thighs with low dose, non-contrast, free-breathing CT images for attenuation

correction and anatomic localization (AC/AL), with imaging beginning at

approximately 60 minutes after radiotracer injection.

COMPARISON: Diagnostic mammogram 08/31/2021 and MR breast 07/29/2021.

INDICATION: Staging breast cancer. Left breast invasive ductal carcinoma with axillary metastasis. Subsequent treatment strategy.

FINDINGS: FDG avid 2.3 cm lesion in the medial left breast with SUV max of 6.8 (image 132) corresponds to biopsy-proven invasive ductal carcinoma (image 133). Asymmetric low-level-mild FDG activity within a left axillary lymph node with SUV max of 1.3 (image 114).

No FDG avid distant lymphadenopathy. No FDG avid hepatic or bone lesions.

Indeterminate focal FDG uptake in the left uterus with SUV max of 7.8 (image 244).

Incidental findings on low-dose unenhanced CT fused images: 2.2cm oval lesion in the medial right breast with internal biopsy clip corresponding to biopsy proven benign nodule has no significant FDG uptake. 7 mm nodule in the medial left breast with no significant FDG uptake (image 123). No suspicious bone lesions


9. Hyperintense T2 lesion in the liver is indeterminate, and may

represent a cyst. Further evaluation with dedicated cross sectional

imaging is recommended.

IMPRESSION:

Liver: 2 adjacent cysts vs septated cyst in the left lobe corresponds to findings on outside MR. No other solid or cystic lesions.

Bile ducts: Not dilated.

EXAM: US ABDOMEN LIMITED LIVER

COMPARISON: MR of 7/29/21.

IMPRESSION:

Uterine fibroids, including a 1.9 cm in the greatest dimension fibroid in the left aspect of the uterine body.

EXAM: US PELVIS TRANSVAGINAL AND TRANSABDOMINAL COMPARISON: PET/CT scan dated 09/01/2021.

TECHNIQUE: Transabdominal and transvaginal.

FINDINGS:

Uterus: 4.1 cmx5.0 cmx9.1 cm.

Myometrium: There is a 1.2 x 1.8 x 1.9 cm in size solid masslike lesion in the left aspect of the uterine body. In addition, there is a 1.2 x 1.2 x 1.4 cm

solid lesion in the anterior fundus. These structures most likely represent uterine fibroids.

Endometrium: Normal. Thickness: 3 mm

Right ovary: A 1.6 cm simple appearing cyst or follicle. Ovarian volume: 7 ml. Left ovary: Normal. Ovarian volume: 4 ml.

Intraperitoneal Fluid: None.

Log in to post a reply

Nov 22, 2021 07:48AM Emotional_Hubby wrote:

Well called Genomic Health this morning.Turns out the results really are just not ready yet.They said the projected date for results is the 26th and we can just call and get the results instead of waiting until MO appointment on the 30th.Thanks again.At least now we can just enjoy turkey day with the 4 boys and not worry bout results until day after .Well wishful thinking anyway.

Log in to post a reply

Nov 22, 2021 09:56AM Serendipity09 wrote:

Emotional Hubby - I'm sorry your wife (and you) have to go through this. I can relate to not wanting to talk about it, nor do I refer to it by what it is, but by "the beast." I lurked through the threads as I did not have the support system and asked a few questions here and there mainly due to surgery, but that was it. When I was diagnosed with a recurrence is when I decided to engage in this community and have really found it supportive, but most of all comforting. I wish I had done it during my initial diagnosis as it helped me feel less alone; I had no one, family or friends, who could relate.

She's very lucky to have you and I pray that all things turn out well for her.

Happy Thanksgiving to you all!

Dx 3/2020, IDC, Right, 4cm, Stage IIB, Grade 3, 1/4 nodes, ER-/PR-, HER2- (IHC) Chemotherapy 3/31/2020 AC + T (Taxol) Surgery 9/16/2020 Lymph node removal; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Chemotherapy 11/3/2020 Xeloda (capecitabine) Dx 7/2021, Right, 2cm, Grade 3, ER-/PR-, HER2- Surgery 7/9/2021 Reconstruction (left); Reconstruction (right) Chemotherapy Xeloda (capecitabine) Chemotherapy Carboplatin (Paraplatin) Radiation Therapy Whole-breast: Breast, Lymph nodes, Chest wall
Log in to post a reply

Nov 29, 2021 03:42PM - edited 22 hours ago by Emotional_Hubby

Well score came back 25.Basically not much help at all being right at the cutoff .She really doesn't know what to do now and is even more confused.

Log in to post a reply

Nov 29, 2021 04:22PM Beesie wrote:

Emotional_Hubby, ask the MO if it is appropriate to run the Oncotype RSClin computer model. Your wife's MO can access it through the Physician's portal on the Genomic Health Oncotype website. The model takes no time at all to complete. It provides a more refined (to the individual patient) recurrence risk and quantifies the chemo benefit, by taking the Oncotype score and adding in 3 other factors - patient's age, tumor size and tumor grade.

Big caution, however. I don't know whether RSClin has been validated for patients who are node positive - I don't think it has been since it was validated using theTAILORx study, which included only node negative patients. But it still might be interesting to run to see whether the model edges your wife more towards chemo based on her age, tumor size and tumor grade, even assuming that she was node negative,

https://www.clinicaloncology.com/Breast-Cancer/Article/06-21/Tool-Uses-Clinicopathologic-Genomic-Features-to-Predict-Chemo-Benefit-in-Early-Breast-Cancer-/63632



Dx 9/15/2005 Right, 7cm+, DCIS-Mi, Stage IA, Gr 3, 0/3 nodes, ER+/PR- ** Dx 01/16/2019 Left, 8mm, IDC, Stage IA, Gr 2, 0/3 nodes, ER+/PR-, HER2- (FISH) ** Surgery 11/30/2005 MX Right, 03/06/2019 MX Left ** Hormonal Therapy 05/2019 Letrozole
Log in to post a reply

22 hours ago Emotional_Hubby wrote:

It says Absolute chemo benefit of 7%.She talks to MO tomorrow but she leaning towards just getting radiation .

Page 1 of 1 (30 results)