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6:12 pm
August 11, 2010
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While I'm not even considering it at this point in time I've noticed that many women with the CDH1 gene mutation are having preventive mastectomies even though current research is not suggesting this course of action. I'm guessing it may be directly related to personal family history. I'd like to hear more from women who have made this choice.
10:25 am
October 19, 2010
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Hi Karen;
I am planning to have a bilateral prophylactic mastectomy in the spring of 2011. I had a gastrectomy in 2010. Several of my cousins who have inherited the CDH1 gene have already had their breasts removed after having received a cancer diagnosis. They say the mastectomy is an easier surgery than the gastrectomy. I want to show my children that with knowledge you have choices, and I will be the example of one of the choices. I am 54 and my daughter and son (not tested yet) will have my experiences to help her with their decisions.
I am choosing to have nipple sparing surgery. This type of sugery is rarely done in Canada. The oncology surgeon does not want to save the nipple since some lobular tissue will remain, however I think this is the right choice for me. Time will be the best judge.
The thought of reducing my risk for cancer from 60% to 10% is a good enough case for me to have this surgery done. I want to have a new normal with low cancer risk even if it means a few less body parts! I will continue monitoring my colon and have manual examination of breasts. Hopefully, I have chosen the right strategy to live a long, healthy and productive life.
Thank you for this website. It has provided me with information and much support.
9:26 pm
October 6, 2010
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Cathy:
just curious, how was your cousins Breast cancer found?, was it on a mammogram or MRI or did they actually feel a lump? I have cysts that are there for past few years and the doctors don’t ever do any biopsies as they are sure they are cysts (from Doug ultrasounds and MRIs ) but still makes me nervous.
I am looking into starting to see a breast cancer specialist this year to see what she has to say too but I’m not real keen on a prophylactic mastectomy, I guess I am trusting that the screenings will keep me safe. But now that I found out that I am the originator of the CDH1 gene in our family I am becoming a little more concerned
Teri
10:18 pm
August 11, 2010
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Cathy,
I'm glad to know that you've found some value in the website. I, like Teri, am interested in how your cousins' breast cancer was diagnosed. I have twice annual clinical exams as well as an annual mammogram and annual breast MRI. At one time I considered Tamoxifen as a preventive measure – until I read the latest research that suggests that “there is insufficient data to recommend chemoprevention with tamoxifen.”
While I haven't felt compelled to have a prophylactic mastectomy yet, I must admit that I have not spent nearly the time researching the issue as I have with the TG. For me the TG was an easy decision – the breast cancer risk is not as easy for me to wrap my arms around. Part of that may be that there isn't enough (or I haven't read enough) research on the topic. I'm traveling for awhile, but one of my priorities for 2011 is to better educate myself, and also find whatever research is out there so that I can make some informed decisions for myself, and expand our website with that information.
There is no history in my family, but that doesn't mean much. My mother was the first with stomach cancer in our family and she died at age 52. I'm the only female in my generation affected by HDGC, and there is one more in the next generation.
It seems you've put a lot of thought into your decision, and feeling confident in your choice is most of the battle I think. Without a crystal ball to predict the future, we do the best we can. I understand the example you wish to show your children. I felt that way about my TG. I wanted all of my family to know that life could be and would be good, and that this HDGC diagnosis was not a sentence to a lifetime of misery and doom. I think I did a good job :-) as I'm sure you have, and will continue to do. I wish you all the best!
Please do stay in touch during the coming months. I for one am interested in following your progress, supporting you in any way that I can, and learning through your experience. If you decide to share your story through a blog or Caringbridge journal, please be sure to provide a link so that I can post/feature it on the website. I'm sure there are many other women who would benefit from your thoughts and experiences as they try to make their own decisions, and who would be there to provide support and encouragement to you as you take the next step in this journey.
All the best,
Karen
6:29 pm
October 19, 2010
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Hi Teri;
I'm not sure by what method their cancers were diagnosed. I will ask them and get back to you.
I think the choice to have your breasts removed is a difficult one. I think knowing how many times breast and stomach cancer has been diagnosed in my genetic pedigree and knowing that my daughter may have the same decisions to make in her future, made the choice easier for me to make.
Cathy
tgarin1 said:
Cathy:
just curious, how was your cousins Breast cancer found?, was it on a mammogram or MRI or did they actually feel a lump? I have cysts that are there for past few years and the doctors don't ever do any biopsies as they are sure they are cysts (from Doug ultrasounds and MRIs ) but still makes me nervous.
I am looking into starting to see a breast cancer specialist this year to see what she has to say too but I'm not real keen on a prophylactic mastectomy, I guess I am trusting that the screenings will keep me safe. But now that I found out that I am the originator of the CDH1 gene in our family I am becoming a little more concernedTeri
4:28 pm
October 19, 2010
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Just had a nice luncheon with my 3 of my cousins who lives have been impacted with this terrible gene. So far, 8 of us, have tested positive. Three of us have had gastrectomies. Two have had breast cancer.
Here are some of the answers to your questions. One cousin said that the radiologist saw something suspicious on her mammogram and asked if she could do a biopsy that same day. J had surgery to remove the cancerous breast and the non cancerous breast was removed as a precaution (it had hyperplastic changes). 4 nodes looked a little strange so they took out 32. She has no loss of mobility in her arms . She later had a reoccurance which was discovered through MRI. She is taking an estrogen blocker and looks great with her newly reconstructed breasts (implants)
Her younger sister had a different experience. Her dx was through mammogram and ultrasound but at surgery the cancer was stage 4. She had the cancerous breast removed followed by chemo and radiation. In Jan 2011, C had a proplylactic mastectomy on the other breast with reconstruction where they harvested her fat to make the new breasts. She is still a little sore but went back to work this week 1/2 time. She is planning her gastrectomy for 2012.
My prophylactic bilateral mastectomy has been postponed due to the high numbers of surgeries required for women with invasive cancer who take priority on the surgical schedule. It is a difficult wait because now that the decision to have the mastectomy has been made I just want to get er done. Also both my cousins were in their early 50's when they were dx, and I am 55.
After speaking with them my feeling is that the MRI is a great screening tool and will catch cancer in its earliest stage.
Having said that, I'm still going for it.
6:49 pm
October 6, 2010
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Cathy:
thanks so much for the info, it helps me support what I need to tell the doctors. I think I will try to see the breast specialist soon to talk things over with her and make sure I’m doing everything I should. You must live in Canada from the sounds of what you are saying about having to wait for surgery. Do they cover a prophylactic mastectomy there or do you have to pay out of pocket If you don’t actually have cancer?
4:28 pm
October 19, 2010
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Hello ladies;
Well I had the prophylactic nipple sparing bilateral mastectomy with expanders on May 4 and was released from hospital on May 5. The oncology surgeon did not recommend the nipple sparing surgery but I felt that it was the right choice for me. I have not reduced my odds for BC to 0% but have reduced the odds enough for my peace of mind. I was in hospital 8 days after the gastrectomy so being released in less thn 24 hrs after surgery was scary. It has been OK. The painkillers work really well and today my drains (2) were removed. At this point in my recovery I am able to do light chores and do not require a daily nap. So if I was to compare the 2 recoveries, this is easier.
On the colourful canvas of my chest is the residual blue dye (sentinal node locator), purple sharpie (incision line),black sutures and maroon dried blood.. I thought it would be really disfiguring (don't look at the images on the web,they'll freak you out) but because I was flat chested to begin with (less than an A) I don't look that much different. In fact once the saline is added to the expander I think my new chest may possibly end up looking nicer than the original. Who would've guessed?
I see the surgeons in 10 days for a post op exams and pathology results.
I found the websites for women with BRCA/mastectomy valuble for information search.
Hope this helps with your decision making. In our family, almost every woman who inherited the gene, also has breast cancer. It made the decision easier for me.
6:26 pm
October 6, 2010
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Thx so much for the update, sounds like you ate doing great. I don’t know too much about the nipple sparing procedure….do they leave all the ducts there underneath the nipple ? I see the breast cancer risk doctor next week so if I find anything new I’ll post it here.
7:05 pm
August 11, 2010
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Very interesting discussion. I have so much to learn about the breast cancer risks of HDGC. Hopefully as I learn I'll have more to share with everyone.
6:52 pm
October 6, 2010
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Just had consult with a doctor that specializes in people with risk fir breast cancer. I went to see her to see if I should be doing anything else to reduce my risk besides regular screening mammograms and MRIs. She told me that since there are no studies showing reduced risk for breast cancer for Cdh1 positive persons With taking Toxifen that she didn’t think the risk for drug possible side effects would outweigh the benefit. She also said that the screening would be enough to detect this type cancer early enough before it would spread as this cancer is typically a slow growing oneand screening tests almost always will see lobular cancer when it is still small and easily resected/treated. She said prophylactic mastectomy is always an option and this is for individuals that are more nervous about their risk Due to family history ( in my case this doesn’t apply since I am originator of gene mutation..). So insummary I guess the screening tests are enough. If anyone else has different info please post as I’m pretty sure I was her first CDH1 carrier patient(:
7:53 am
August 11, 2010
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Interesting that you post this right now Teri. I'm in the process of editing (and will soon post) some video from my recent conversations with Parry Guilford, part of which is about the lobular breast cancer risk. Your doc is in alignment with Parry's thinking. Annual MRI screening is the most important thing that we can be doing at this time to address the lobular breast cancer risk.
I hope to get the videos on the website before the end of the month. There is an entire segment about the current research in NZ too!
11:41 pm
September 20, 2010
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Cathy…good to hear of your successful surgery and recovery! I can only imagine the relief you must be feeling from reducing your risk with so much careful consideration. I wish you and your cousins a continuing and completely successful recovery process.
Teri, glad you had a good consult/discussion with the breast specialist and had many questions answered, particularly given that you are the first CDH1+ patient. You were an educator:)
Although I'm not directly impacted with HDGC syndrome myself, two of the women I most treasure in the world do have this risk, so I appreciate the discussion and sharing here.
All the best!
Cindy
5:04 pm
October 19, 2010
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Had the tissue expander removed/implants inserted on Friday and I look and feel good. The exchange surgery is the easiest surgery yet and the results are great. My breasts are a bit larger than they were before all of this started and once the implants drop and fluff all of the scarring should be covered by the breasts. They look perfect and I am happy with the results. Looking forward to welcoming 2012 as the start of a New Normal without surgery looming in the future.
Life is good.
Thank you for giving me choices.
9:40 am
February 10, 2012
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CathyO said:
Hi Teri;
I'm not sure by what method their cancers were diagnosed. I will ask them and get back to you.
I think the choice to have your breasts removed is a difficult one. I think knowing how many times breast and stomach cancer has been diagnosed in my genetic pedigree and knowing that my daughter may have the same decisions to make in her future, made the choice easier for me to make.
Cathy
tgarin1 said:
Cathy:
just curious, how was your cousins Breast cancer found?, was it on a mammogram or MRI or did they actually feel a lump? I have cysts that are there for past few years and the doctors don't ever do any biopsies as they are sure they are cysts (from Doug ultrasounds and MRIs ) but still makes me nervous.
I am looking into starting to see a breast cancer specialist this year to see what she has to say too but I'm not real keen on a prophylactic mastectomy, I guess I am trusting that the screenings will keep me safe. But now that I found out that I am the originator of the CDH1 gene in our family I am becoming a little more concernedTeri
I too, am interested in how the cancer was found. We're told to screen ourselves and feel for lumps, but I am worried that's not enough. These days, you get conflicting recommendations. Some doctors say to come in twice a year, some say once a year. And it's even more complicated when you have a genetic condition such as some of you. I feel your pain!
There are a lot of local doctors in my area that I am reading about to see which one might work for me. So far, I've heard about Dr. Robert Goulet, who specializes in breast care. I just hope all of these agencies continue to make progress on fighting breast cancer. It's a terrible disease.
11:48 pm
December 27, 2010
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Just wanted to interject here. I did have prophylactic bilateral mastectomies in 2008 for my CDH1 mutation.
My reasons were my experience with stage 3 HDGC in 1993 treated with chemo radiation and partial gastrectomy then a recurrance in 1997 treated with total gastrectomy. I also had a total hysterectomy shortly in 1998 because I had bilateral enlarging ovarian cysts that were persistant for 5 months. Because of the suspicious nature and my own concerns plus tha fact that that I never used that equipment (my kids are adopted) I went ahead with that.
.Fast forward to early 2008 when following my mothers 2007 death from colon cancer (no other history but was poorly differentiated adenocarcinoma; CDH1 status unknown) I found out I did in fact have a large deletion/mutation on the CDH1 gene. My bloodwork was in Vancouver for over 2 years and following some newly developed equipment and lab techniques it was discovered. The reason they accepted my workup was that my older brother died in 1988 of gastric cancer at 37 following 7 months of chemotherapy and paliative surgery.
As I have had recurrent issues diagnosed with fibrocystic disease I have had mammograms since my late 20s. Even before my knowledge of my mutation Pardeep had discussed with me the recommendations for alternating MRIs since lobular breast cancer is harder to detect. By summer of 2008 I was concerned enough (knowing that the breast cancers present typically in 50s and my brother and I had gotten our cancers in our 30s) to begin investigating the surgery. Actually everyone from my oncologist to my internist to my surgeon to my insurance company felt it was indicated. I went ahead with the surgery November 2008 and had modified radical with a Tram-Flap reconstruction. It was a grueling operation and stayed in 10 days. The physical discomfort and recuperation from the surgery itself was more intense then either of my gastric surgeries. But anyone who has had a Tram Flap will tell you the same thing. On the plus side it totally revised my gastrectoy scar which was 13 inches and is now 6. It also left me with a nice flat tummy and perky boobs. It took me at least 4 months to feel close to normal but I did not regret it. My pathology reports came back that I had atypical lobular hyperplasia (http://www.mayoclinic.com/heal…..N=causes ) Basically a precurser to obular cancer.
So I dodged a bullet. I have seen both my mom and brother deal with chemo at end stage disease plus I myself have had chemo for 9 months back in 1993.. No way do I want to go through that again.. I am also vigilant with my colonoscopies as I think there have been some studies indicating that we have increased risk for that.
7:39 am
May 24, 2011
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Hello
I have been reading through the thread of these posts relating to breast cancer risks as I have been wanting to find out more about this side of the CDH1 gene.
I am now 6 months post prophylactic gastrectomy (hooray!!) and I suppose I have been quite consumed with the stomach cancer risks ,etc, that I havent given alot of thought to the breast cancer risk.
My family has a much higher % of males with the gene and so it is difficult to ascertain stats on this. Infact, my aunt and I are the only 2 females testing positive at this stage and we have both only found this out within the last 18 months,
I too have been doing annual MRI, mamogram and 6 monthly breast checks. My last MRI/mamogram was last week where I had a small scare twhen they found something suspicious on MRI but nothing showed up on ultrasound so hopefully it was nothing!?!
Any information you can provide on this would be greatly appreciated.
Simone
6:51 pm
August 11, 2010
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Hi Simone,
I will commit to digging deeper into the issues, answers, recommendations regarding CDH1 and breast cancer. I don’t believe there has been much research in this regard – something I’d like to see / help change. Don’t expect a quick reply, but I’ll start searching for answers.
Happy Mothers Day! So glad you’re here to celebrate the day with your family :-)
Karen
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