Join Us

We are 220,437 members in 84 forums discussing 161,930 topics.

Help with Abbreviations

Topic: Will chek2 affect treatment plan

Forum: IDC (Invasive Ductal Carcinoma) — Just diagnosed, in treatment, or finished treatment for IDC.

Posted on: Nov 3, 2020 12:21PM

kdholt wrote:

Hi ladies! So 2 weeks ago I had a BMX with reconstruction. I’m still sore, have 2 drains that I hope will be gone by Friday. But I think I’m healing well. My pathology did not change after surgery. Still stage 1A, no node involvement, good margins, etc. I meet with MO next week but surgeon feels my treatment plan will still be 12 weeks of taxol plus 12months of herceptin. I’m super glad I had the BMX now because I found out I have the chek2 mutation. But other than more frequent screenings for colorectal cancer, etc. does that change my overall treatment plan? Any chek2 ladies out there that can speak to this? I did go to the genetic forum but could not find anything that specifically addressed this question.

Deb

Dx 4/10/2008, IDC, <1cm, Stage I, Grade 1, 0/3 nodes, ER+/PR+, HER2- Dx 9/21/2020, IDC, Left, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR-, HER2+
Log in to post a reply

Page 1 of 1 (14 results)

Posts 1 - 14 (14 total)

Log in to post a reply

Nov 3, 2020 03:59PM Beesie wrote:

To my understanding, no, this will not change your treatment plan. The mutation increases your risk to get breast cancer. Now that you have breast cancer, it's the pathology of the cancer that determines the treatment plan.

Of course if you hadn't had the BMX you could choose to have a BMX now, but that would be to avoid a second diagnosis because of your higher risk, it wouldn't have anything to do with the current diagnosis.




“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
Log in to post a reply

Nov 4, 2020 01:07PM kdholt wrote:

Beesie,

Thank you! I’m glad to hear that everything should remain the same!

Debbi

Dx 4/10/2008, IDC, <1cm, Stage I, Grade 1, 0/3 nodes, ER+/PR+, HER2- Dx 9/21/2020, IDC, Left, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR-, HER2+
Log in to post a reply

Nov 7, 2020 06:15AM kdholt wrote:

Back to the chek2, I know I’m overthinking things and I’m writing down questions for my onc. I meet with her Tuesday. But does anyone know if a chek2 mutation affects my overall prognosis? I’ve had cancer twice and the second time more aggressive than the first. Fortunately I had the BMX but they never get all the breast tissue. Right now I feel like a ticking time bomb. Are there long term survivors out there who had a chek2 mutation?

I’m also bummed because when I met with my breast surgeon yesterday she went over my final pathology and of course it changed. So instead of being stage 1A I am now stage 2A due to 2.1 cm tumor and grade 3. Just looking for encouragement I guess. There is just so much about this I don’t understand and the more I read the more confused I get.

Debb

Dx 4/10/2008, IDC, <1cm, Stage I, Grade 1, 0/3 nodes, ER+/PR+, HER2- Dx 9/21/2020, IDC, Left, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR-, HER2+
Log in to post a reply

Nov 7, 2020 08:45AM - edited Nov 7, 2020 08:47AM by Gamb

Hi kd, I also have the Chek2 mutation. The way I understand or was explained to me this mutation increased my risk for probable breast cancer to almost a 50%, so this determined for me to have a double mastectomy. It's also my understanding that it increase probable higher cancer risk for colon cancer and Drs recommend every 3 years for colonoscopy instead of the 10 years people without this mutation.

Now it's the word probable that stands out, because Drs don't know if this mutation leads to anything it could or it could not. Well that's life. Did the ckek2 cause my cancer? Drs can't say, nor can the generics counselor. It's a crap shoot, that's the way I look at it. No one in my family history has breast cancer and the Chek2 had no bearing in my treatment, so other than earlier screenings it does me little to even know i have this mutation.


Log in to post a reply

Nov 7, 2020 08:50AM Gamb wrote:

I do have children and they both have declined to have the genetic test ,to determine if they are carriers. In my opinion, for me at least, I would never had the test if I hadn't got breast cancer.

Log in to post a reply

Nov 7, 2020 12:06PM Beesie wrote:

kdholt, as you said, even after a BMX, a small amount of breast tissue always remains. This is why, for most patients, there is a 1% - 2% chance of developing breast cancer (not a recurrence but a new primary cancer) after a BMX. I would expect that with the CHEK2 mutation your risk will be somewhat higher. But how much higher?

Honestly, I have no idea, but I like playing with numbers so let's do that. To my understanding, for BRCA+ patients, a BMX generally reduces breast cancer risk by 90% - 95%. On average the breast cancer risk for someone with a BRCA mutation is about 70%. A 90% - 95% reduction in risk with a BMX takes this risk down to 3.5% - 7%. (Good, the 7% matches what I recall reading!) If with the CHEK2 mutation your risk to develop a first BC is 50% (I took that from Gamb's post), then a similar reduction from a BMX would take the risk down to 2.5% - 5%. Even with a genetic mutation, usually the risk to develop a second BC is lower than the risk to develop BC one time. I would expect that the risk to develop a third BC is lower still. So this means your risk to develop a 3rd breast cancer, now that you've had the BMX, is probably somewhere between the 1% - 2% risk faced by the average patient, and the 2.5% - 5% first time breast cancer risk faced by a CHEK2 patient who's had a BMX. Average it out to 3%. Of course that's all speculation, but the data behind the speculation is real data so your real risk is going to be right in the range. Make sense?

So, a bit higher than average but hardly a ticking time bomb.

“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
Log in to post a reply

Nov 7, 2020 02:09PM kdholt wrote:

Gamb and Beesie thank you so much for your responses. You help me see things more clearly and remove the panic. Beesie I’m not good with numbers so I’m glad you like them!

One more question for someone out there. My breast surgeon still thinks I’m a good candidate for taxol and herceptin. She brought it up again when I saw her yesterday. So I have been scouring these forums looking for information on TH. To me it looks like many stage 1 her+ Get it but what about us stage 2. Do we still qualify for TH? Or will I more than likely get something different? I know treatment protocols change often. I see my MO Tuesday so I guess I will know for sure what the plan is then. I guess I’m really hoping to be able to do TH and hoping new stage and grade of my cancer aren’t going to prevent me from this treatment path. My daughter is getting married in May and I’d love to have the hard stuff behind me by then so I can enjoy the day!

Debbi

Dx 4/10/2008, IDC, <1cm, Stage I, Grade 1, 0/3 nodes, ER+/PR+, HER2- Dx 9/21/2020, IDC, Left, 2cm, Stage IIA, Grade 3, 0/3 nodes, ER+/PR-, HER2+
Log in to post a reply

Nov 7, 2020 02:27PM Beesie wrote:

Debbi, with the title of this thread, the people who can answer your question about TH probably aren't reading here. You might want to repost the question in the HER2+ forum, with a very specific subject line, something like "Chemo protocols Stage II HER2+" or " Taxol + Herceptin for Stage II?".


“No power so effectually robs the mind of all its powers of acting and reasoning as fear.” Edmund Burke
Log in to post a reply

Nov 7, 2020 03:13PM MinusTwo wrote:

kdholt - you can get the answers by just reading the chemo threads. Take some time to slow down now and start reading instead of reacting. I'll go ahead and answer on yet the next thread you've started, but please do try to slow down and actually read what's out there.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
Log in to post a reply

Dec 12, 2020 06:31AM - edited Dec 12, 2020 06:35AM by Nottodaycancer2020

hi kdholt-I am chek2 positive and in the middle of treatment. So far my treatment has remained the same for my breast cancer. I just had my bilateral mastectomy on 12/1 with immediate reconstruction.

My Gyno is recommending I get a hysterectomy due to the chek2 since all the medications turn off your reproductive organs and I am done having kids.
I will be getting an extra colon exam compared the rest of the population starting at the age 40

Let me know if you have any questions. It's hard to find the chek2 positive ladies on here

34 years old, DX-DCIS on 6/25, DX-IDC-HER2 triple positive in July, 1 node involved, grade III, positive for CHEK2 gene, started TCHP regimen on 7/24/2020
Log in to post a reply

Dec 14, 2020 06:16PM smackan wrote:

I have the Chek2 mutation as well. My variant is I157t. It did not change my treatment plan. I did have a thyroid ultrasound and am recommended to have a colonoscopy every 3 years but it was postponed due to Covid. I am having rotating mammogram or MRI every 6 months due to the mutation. I didn’t choose to do a mastectomy but if the cancer comes back, I am sure I will regret that decision. Also, I did met with a gynecologist but did not recommend recommend taking ovaries or hysterectomy. They said we would just monitor yearly but I was 53 when diagnosed so just starting menopause.

Chek2 Mutation. Onctotype=15 Dx 5/21/2019, IDC, Left, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (IHC) Surgery 7/31/2019 Lumpectomy; Lymph node removal: Sentinel Radiation Therapy 9/20/2019 Whole-breast Hormonal Therapy 10/28/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Dec 31, 2020 09:01AM jennyjo20 wrote:

Hi everyone, I also have a CHEK2 mutation. Mine is c.1100delC, which did not change my treatment plan. Most of what I have learned is similar to what has already been mentioned. Namely, that we have twice the risk of breast and colon cancer from the rest of the population, and therefore need better screening (breast - alternating mammo with MRI every 6 months; colon - colonoscopies starting at 40 and done every 5 years instead of 10). My report says it may be linked to other cancers such as thyroid, melanoma, kidney, stomach and lymphoma, but there isn't a strong enough link to change the screening recommendations at this point. When I spoke to the genetic counselor, she said the types of cancer I've seen in my family are likely the ones I will be at higher risk for.

By process of elimination, this came from my dad's side. Breast and pancreatic cancer in my mom's family prompted genetic testing, so we know she is negative for this mutation (although I don't know what additional risk I get from her side of the family). Thankfully, my dad remains cancer-free at 69. His mother had both breast and colon cancer, but not until her late 70s/early 80s. One of his brothers had non-hodgkins lymphoma in his 30s, another has had melanoma and prostate cancer, both in his 70s, and my dad's third brother, like my dad, has never had cancer.

I notified all members of that side of the family and don't know how many of them have been tested. My brother's test results are pending and I'm really hoping he doesn't have it.

Prior to learning of my breast cancer diagnosis (and CHEK2 mutation) I'd been monitoring two subcentimeter thyroid nodules for several years now. The current recommendation is that they don't biopsy anything less than a centimeter, especially when they aren't growing. Upon learning of my CHEK2 mutation, I asked if that changed the recommendation and was told it does not, but I could biopsy if I wanted to. Since they've remained stable, and I had my hands pretty full with breast cancer treatment all year, I have chosen not to. But that might change now that I'm settling into the endocrine therapy leg of this marathon.

I'd love to stay connected with other people who have this mutation and share any new information we learn. Thank you everyone for sharing, and I'm happy to answer any additional questions about my own situation.

Diagnosed at 42 - Oncotype 24; CHEK2 mutation Dx 2/2020, IDC, Right, 1cm, Stage IIA, Grade 2, 1/5 nodes, ER+/PR+, HER2- (FISH) Surgery 3/18/2020 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 4/17/2020 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide) Hormonal Therapy 7/7/2020 Arimidex (anastrozole), Zoladex (goserelin) Radiation Therapy 7/13/2020 Whole-breast: Breast, Lymph nodes Hormonal Therapy 8/17/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
Log in to post a reply

Feb 3, 2021 09:27AM Mommd wrote:

I have CheK2 gene, low penetrance, variant c.1283. (see notes below). Treatment very much depends on each person's gene variant and all other medical factors.

I had genetic testing through Invitae in 2018 because my mother died of pancreatic cancer and genetic testing became available for 1st degree relatives. My sister had IDC breast cancer12 years ago, negative genetic testing, bil mastectomy, and had a new breast tumor (different type) 5 years ago in residual breast tissue! Due to borderline increased risk (19.5%) with my Chek2 variant I started annual MRI alternating with annual mammo. July 2019 mammo neg. Dec 2019 MRI showed slight contrast on right and US showed an 8 mm density. I have mildly dense breasts and had a very painful benign stereotactic bx 12 years ago with post procedure bleed 2 days later. I opted to wait and have repeat studies. Mammo July 2020 showed 2 lesions on right, MRI confirmed no other lesions. After consults with 2 breast surgeons, med onc, rad onc and genetics counselor as well as a 1 hour phone consult with the Invitae genetics counselor, all agreed that with MY CHEK2 VARIANT, bilateral mastectomy was not necessary and lumpectomy, sentinel nodes, RT and AI was essentially equal for long term risk of recurrence. I opted to have my care at the medical school rather than the community hospital which offered more options at each step of treatment. I am grateful that my surgeons also discussed the psychosexual impact of mastectomies vs right lumpectomy with bilateral oncoplastic reconstruction for symmetry. I am 66 and after breastfeeding 4 children along with age, I had significant ptosis. Medicare and my supplemental Medicare unsurance covered ALL costs. I have a great cosmetic outcome and sex life and am continuing to have MRI every 6 months and mammo every 6 months at this time. The geneticists, GI specialist and PCP have all recommended colonoscopy every 5 years. I also have hypothyroidism for many years with 2 nodules that have been biopsied at 2 different times and are negative. I will continue to get preventive health screening and vaccinations, eat a very healthy diet, exercise daily for at least 60 minues, have rare alcohol use, do yoga and meditation and work on adequate sleep despite AIs.

A Pathogenic (low penetrance) variant, c.1283C>T (p.Ser428Phe), was identified in CHEK2.

  • The CHEK2 gene is associated with an increased risk for autosomal dominant breast, colon, thyroid and
  • prostate cancers (PMID: 15492928, 18759107, 21807500, 21876083, 25431674).

  • The lifetime risk of breast cancer in females with a single pathogenic CHEK2 variant is 25-39% (PMID:
  • 18172190, 21876083). This variant is described as pathogenic with low penetrance because it does not confer the same level of cancer risk as other pathogenic variants identified in CHEK2 (see variant details below). There is also a reported association between CHEK2 and other cancers including male breast, colorectal, prostate and thyroid cancers, but the lifetime risk of these other cancers is currently unknown(PMID: 18759107, 21807500, 23713947, 15492928, 25431674).

    Log in to post a reply

    Feb 3, 2021 06:41PM jennyjo20 wrote:

    Thank you for sharing, Mommd. Though we have different Chek2 variants, I still find your information very helpful. Hearing that your thyroid nodules were confirmed to be benign, makes me feel a little more comfortable sticking with my doctors' recommendation that I not biopsy unless they grow (which they haven't since 2016). It was hard to not feel doomed to a life of various cancers when I first got the news about my mutation. But constant fear is a pretty awful way to live, so instead I'm committing myself to all the risk-reduction and early detection methods within my power, and trying my best to live an otherwise happy and healthy life.

    My brother did get his results back and unfortunately also has this mutation. He's 40 and will be getting his first colonoscopy this month. Fingers crossed that he will get a clean bill of health and will be told to return in 5 years like me.

    If anyone ends up receiving additional screening guidelines, please share and I will do the same.

    Diagnosed at 42 - Oncotype 24; CHEK2 mutation Dx 2/2020, IDC, Right, 1cm, Stage IIA, Grade 2, 1/5 nodes, ER+/PR+, HER2- (FISH) Surgery 3/18/2020 Lumpectomy: Right; Lymph node removal: Sentinel Chemotherapy 4/17/2020 Abraxane (albumin-bound or nab-paclitaxel), Cytoxan (cyclophosphamide) Hormonal Therapy 7/7/2020 Arimidex (anastrozole), Zoladex (goserelin) Radiation Therapy 7/13/2020 Whole-breast: Breast, Lymph nodes Hormonal Therapy 8/17/2020 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)

    Page 1 of 1 (14 results)