Lynch syndrome questions

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Malidosa
Posts: 35
Joined: Sun Dec 29, 2019 11:15 pm

Lynch syndrome questions

Postby Malidosa » Wed Feb 05, 2020 1:25 pm

Hi. So my brother and I both were diagnosed with colon cancer a week apart. I’m 35. He is 34. Luckily both caught early. Me stage 1 and him early stage 2.

I’m being tested for lynch syndrome. Which my oncologist already assumes it is.

My questions are for anyone who has lynch syndrome. How were you treated by physicians once diagnosed? Have they done more scans and exams? Have they suggested removal of other lynch related organs to be removed?

Mainly what had your experience with it been?

Thanks
Dx - Cecum mass - age 35
Stage 1 (T2, N0, M0) - CEA level - 0.5
26 nodes negative
Right Colectomy 1/16/20
Currently investigating a 3.2 cm adrenal mass

KimT
Posts: 687
Joined: Sat Feb 20, 2010 8:53 pm

Re: Lynch syndrome questions

Postby KimT » Wed Feb 05, 2020 1:39 pm

I was diagnosed 11 years ago with lynch. It has gotten much better over the years. When I was first diagnosed, most doctors had not heard of it yet. I have moved around 4 times in the last 10 years so I’ve seen a lot of new doctors. In the past 5 years or so, all my doctors have been familiar with lynch. I have had no issues with them ordering the recommended testing for surveillance.
2/10 dx colon cancer
right hemicolectomy 3/19/10
Stage 2a 0/43 nodes
Lynch syndrome
3/14/10 colon resection/ removal of metal clips
Nov 11 dx ovarian cancer

User avatar
henry123
Posts: 212
Joined: Sun Oct 08, 2017 3:25 am

Re: Lynch syndrome questions

Postby henry123 » Fri Feb 07, 2020 4:33 am

Please see my signature.
Two suggestions
Aspirin
Immunotherapy
46yo M msi-high Lynch +ve
5/16 lap AR 14/21 L nodes +ve
T4N2M1
7/16 Capox 9 cyc
9/16 cea 2
1/17 550
PET CT mets in lung & peri
iri+ avast fail
3/17 10577
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes ,onset of multi nodules in liver
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
11/17 12
CT all clear exc a nodule in Lung. liver norm
1/18 3.6
4/18 2
Aspirin start
6/18 1.5 CT clear
12/18 1.1 NED
6/19 .9 CT clear
1/20 NED Opdivo stop

boxhill
Posts: 557
Joined: Fri Apr 06, 2018 11:40 am

Re: Lynch syndrome questions

Postby boxhill » Fri Feb 07, 2020 11:06 am

I was tested for Lynch, but my dMMR is in the tumor only, so I don't have it. I am MSI-H, and thus an excellent candidate for immunotherapy. Clearly, if you are now NED you don't need it now, but it's good to know it's available.

When I was discussing this with the genetic counselor, she mentioned that women with Lynch may choose to have a prophylactic hysterectomy after childbearing is over, and I've also read this. Since I was 65 at the time, that is something I would have considered. I haven't seen any suggestion that women your age should do so, unless maybe you have already had a number of children and don't want more.

Have you spoken with a genetic counselor? If not, you ought to do so whether or not your results come back positive for Lynch. The fact that your sibling has CRC doesn't necessarily mean you both have Lynch. My sister had CRC, and I don't. Admittedly, we were older.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Suspend treatment

Malidosa
Posts: 35
Joined: Sun Dec 29, 2019 11:15 pm

Re: Lynch syndrome questions

Postby Malidosa » Fri Feb 07, 2020 12:25 pm

Hey Boxhill,

Thanks for always replying to my posts by the way.

I have an appointment set up with a genetic counselor next Tuesday. The whole genetics thing has thrown me for a loop. My oncologist did mention the idea of a hysterectomy depending on what my genetic tests come back with. I mean I’ve had my kids they are teens now. And quite honestly from the minute they said there was cancer in me I’m like just take out whatever I absolutely don’t need. So I’m open to getting anything removed at this point lol

They tossed around the idea of lynch syndrome because my aunt was diagnosed this year also with uterine cancer. But she’s also almost 70. Whom I have been told that hers was tested and showed it was not due to genetics. It’s just odd to me because they keep saying lynch is genetic And passed down but literally we don’t have the link from anyone else to connect it genetically? My moms side has no history of cancer. And my dad just the aunt mentioned earlier with uterine and 2 others sisters with Breast (all diagnosed at or around 60 and all told us there’s was not due to genetic genes)

I mean the tests are out there just waiting to get results at this point but I’m just sort of stuck right now in the state of wondering like can lynch just start in me and my brothers generation? What does this mean for my kids? Cause admittedly they are very freaked out. And already asking for colonoscopies because they just want the peace of mind of an all clear. Just hoping to find some assurance also that lynch isn’t in itself just a ticking time bomb for more cancer.
Dx - Cecum mass - age 35
Stage 1 (T2, N0, M0) - CEA level - 0.5
26 nodes negative
Right Colectomy 1/16/20
Currently investigating a 3.2 cm adrenal mass

boxhill
Posts: 557
Joined: Fri Apr 06, 2018 11:40 am

Re: Lynch syndrome questions

Postby boxhill » Fri Feb 07, 2020 2:29 pm

We had no one in our family with CRC before us. On the other hand, our family is very small on both sides, so as the counselor pointed out there weren't many possibilities.

Can we assume that your tumor was tested, and showed dMMR? Is the same true for your brother?

You are likely not a "unicorn" Lynch case. That's what I tried to keep in mind about my own chances while waiting. And my results were delayed for weeks, so it seemed interminable. My first thought was for my son, naturally.

Hope you get good news.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Suspend treatment

Supportivechild
Posts: 24
Joined: Thu Dec 26, 2019 12:45 am

Re: Lynch syndrome questions

Postby Supportivechild » Tue Feb 11, 2020 7:46 pm

My mother just did her genetic counseling today. She was told that based on her family history with cancer and her biopsy results her cancer has no genetic component. They suggest the blood test to check for the lynch syndrome which could be linked to her aunt who died from stomach cancer or her grandmother who had ovarian cancer.
It was so much information to take in. My mother doesnt want the blood test.
Caregiver of mother 56
12-13-19 DX Rectal Cancer
5 CM Mass
T1N1M0
2 suspicious lymph nodes 7x4mm 5x3 mm
Abdomen/Pelvis CT
MRI Rectal Screening
Chest CT
PET SCAN

boxhill
Posts: 557
Joined: Fri Apr 06, 2018 11:40 am

Re: Lynch syndrome questions

Postby boxhill » Thu Feb 13, 2020 4:32 pm

Supportivechild, why doesn't she want to do the blood test?

Does she understand that if she is negative that it means that you and any siblings you might have can't have it? It would be excellent for your peace of mind. On the other hand, if she does have it, you would be in a position to get tested and take steps to protect your health going forward.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Suspend treatment

Supportivechild
Posts: 24
Joined: Thu Dec 26, 2019 12:45 am

Re: Lynch syndrome questions

Postby Supportivechild » Tue Feb 18, 2020 11:27 am

boxhill wrote:Supportivechild, why doesn't she want to do the blood test?

Does she understand that if she is negative that it means that you and any siblings you might have can't have it? It would be excellent for your peace of mind. On the other hand, if she does have it, you would be in a position to get tested and take steps to protect your health going forward.



From my understanding the possibility of the results being positive wouldn't give her a peace of mind. She would live her life worrying about the other cancers linked to the syndrome. She has a high level of anxiety. I will take it upon myself to get tested and protect myself.
Caregiver of mother 56
12-13-19 DX Rectal Cancer
5 CM Mass
T1N1M0
2 suspicious lymph nodes 7x4mm 5x3 mm
Abdomen/Pelvis CT
MRI Rectal Screening
Chest CT
PET SCAN

boxhill
Posts: 557
Joined: Fri Apr 06, 2018 11:40 am

Re: Lynch syndrome questions

Postby boxhill » Tue Feb 18, 2020 11:14 pm

I think getting the blood test yourself is a good idea.

I discovered when tested that although I didn't have Lynch I did have ATM, which increases the chances of breast cancer. I have tried to persuade my sister to get tested, since she has **4** daughters, but she hasn't done it. One of her daughters just went ahead and did it herself, using my test results as evidence that her insurance should cover it. Thankfully, she was negative. There is no history of breast cancer in our family either.

BTW, I don't see how your mother can have a strong likelihood of Lynch if there were no genetic factors in her tumor. I thought that Lynch was a possibility only if one's tumor showed dMMR, the question then being if the dMMR mutation was only in the tumor or germline. But perhaps I am mistaken.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Suspend treatment


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