The Husbands Corner(for family, friends, boyfriends, ect.)

Tomboy

I feel bad if i hurt a bug, normally, and even put the spiders out the house with a glass and a peice of cardboard! i really would never hurt someone, but it is pretty amazing how mad i can get, and how quickly. i am so sorry, oddducklady. It must be kind of embarrasing for him too,being a man with that, just because of society. but it shouldnt be, none of it is our fault whatsoever, it is just one of the things that can go wrong in our bodies, and i hope i didn't offend you, by saying that. i hope that you too have someone that you can confide in, and that you are not forgetting to take care of yourself too.

oddducklady

Kathec- It has been pretty amazing that my husband has seemed to have no problems with the dx-he has told friends easily and with a kind of irony. At first, of course, he had a real fear that this was due to him having a gene for BC that he could pass on but he had the genetics testing and was negative. I saw a real load lifted off of him with those results. And one positive is that as a man he has not had to deal with any of those reconstruction decisions and all of the problems I see on these forums that comes with that. The way I see him is that he has rather a dashing scar across the left side of his chest. Kind of a one eyed pirate look. And certainly at the cancer center where we go, he was remembered immediately. Gotta look for the positives as getting through this tx has had a lot of negatives.

Dedicated- It is very difficult to see someone that you love be hurting and go through this. You try to put on a positive face but yet you have your own fears. I can not imagine my life without my husband. I try hard not to think about it but there are times when those thoughts are just there and it is scary.  And you have to be flexible with their moods. Every day is different. It sounds like your attitude about this is a lot like mine- my husband and I are a team and we are going to fight this evil shit together. We are not giving up. Know you are not alone.

blondiex46

I bow and am so impressed that you all have the courage to come here and talk about the pain, etc. In my experience it takes alot for men to put their feelings out there for strangers to see.....your wives are very lucky to have such caring and loving me in their lives....keep coming back...hope we can help, explain, listen or whatever you need us to do, maybe even nothing...but again we are here...

Niloc

Oddducklady, keep looking for the positives, as they are there, in unexpected ways. Like I can hug my wife closer on one side than the other - and she appreciates what she has more. We can laugh at things we would never have even thought of before now. Like today she was talking about being always right (as women like to think they always are - chuckle) and I said, "Honey, you haven't got a right, you've got a left but not a right! However, I'm not coming near you at the moment as you'd hit me with your right!" We've learnt to laugh at it now, even though it is so bloody serious. You either laugh at yourselves, or it overtakes you, and that is no good for either of you.

And each set of tests, shudder. I know and accept that she will reenter that zone every time and be a bit touchy (to put it mildly) WAITING - god we hate waiting - for the damn results. PMS is now Pre Mammogram Stress and Post Mammogram Stress. OK, we're lucky in that it should be clear, but there is always that percentage that gets under your guard and irrational thoughts flood in. There is such elation and relief when the all clear for now, is given, but I really feel for those who don't get that result. That's why I'm here - not for me, but for those who don't get the good results.

Blondiex46, we keep coming back cause you've put up with our shitty moods and wingeing like babies when we're sick and you came back for us. It's just returning the debt, but with love, not obligation. What reallly p1sses us both though, are husbands who disappear, run-off with someone else or just focus on a physical feature instead of being thankful we still have them there. Those guys are just cowards and are just unfairly kicking someone, when that person shouldn't have to deal with anything more than what should be most important at that time, themselves.

Kathec, I bow to you as having gone through the process from both sides - as a recipient and as a carer. You are one tough lady - wow that wouldn't be easy. But you're so right - it's not the person's fault that the big BC hits them. It's not like they got it through doing something stupid, it just happened.

It is often hard for a guy to open up his soft side and expose inner feelings to others, but it can really help at times. It can also be helpful to be anonymous online and shed a tear while typing, that we wouldn't shed openly with others. That can be a relief.

Tomboy

i wouldn't have been able to do this nearly so well, without all the wonderful people on BCO, thats for sure! Oddducklady! Ha! "a dashing pirate", good for you!

blondiex46

Niloc, it just isn't the husbands/bf that run, friends to, aquaintences do also, along with other that are cowards, imo

what a good guy u r....

Niloc

Yes, poor friends and those who don't like to associiate with 'sick' people, are sorted from real friends - so very right Blondie, but I don't see that as all that negative! However, my wife has also made great friends with fellow BC survivors though her support group and other networks, like on here, that she really enjoys. Mind you, they don't discuss much about BC, but related issues, yes, and unrelated issues more so! They have joined our friends network.

We have found that both our attitudes have changed, for the better, and our outlook on life very different.

Her2husband

Hi all,

My wife has recently been diagnosed as stage 4. I had finally got my head around all the stage 3 treatment, the aftermath of bilateral mastectomy and reconstruction, the "final treatment" and looking forward to the tag 'breast cancer survivor'. Now that has all changed.

We are now in what feels like unchartered waters with little knowledge of what and when and how future events will play out.

We have another appointment with the Onc next week so hopefully some of our questions will be answered. This is a whole new ball game that seems all too real with in someways a deep dread of the inevitable.

j

Dedicated77

Hey brother,

This is such a hard thing to go through.  Especially when your mortality is in question.  I talked to a lot of people about this.  There is hope and never lose that hope.  I talked to one lady whom was stage 4.  She is 10yrs cancer free and still going strong.  And of course I have talked to others who weren't so lucky.  And remember every case is different.  Wait till you go to your doctor and see what he has to say.  Every day I tell my wife how beautiful she is to me and thank her for marrying me.  And i never miss an opportunity to make her smile.  Enjoy every moment you have with each other.  We are always here for ya. 

 

Her2husband

Hi Dedicated77,

Thanks for your reply. As I said it is all new and a little raw at the moment with the usual rollercoaster of emotions. I am sure that there will be an acceptance and new normal phase just need to get there.

J

Moderators

Hi all,

We are looking to share your journeys on our website.
Recently we started a new section on acknowledging our dear members of
the community (http://www.breastcancer.org/community/acknowledgin...). 

November is Caregiver Awareness Month, and we want to
share stories to and from caregivers. If you are interested in sharing your story on our site, please Private message us your story, your inspirational message, suggestions, advice to other caregivers, and a photo of yourself or something that represents you.

Many thanks!
The Mods

Niloc

I wrote a story when Mods first asked and found it to be quite cathartic to put my feelings down and gain perspective from the retrospective. It can be interesting to write it down for remembering "things now almost forgotten" aspect (even if you decide not to submit) I would recommend it.

Sure, I got a bit emotional at times when putting it together, but I'm glad I did for myself. It was also interesting to see my wife read it (wouldn't submit without her checking it first anyway - after all it is "all about her"), as it can bring feelings clearly to the surface to discuss openly.

All I can say is, give it a try and consider sending it onto Mods. Carers deserve a voice here as we are generally the silent group affected by BC and need to support each other by letting others know that: it is normal to get pent up emotions, become furious and angry at how this BC affects our partners, our family and us. We are allowed to hate BC! However, we are also allowed to recognise it as a fact of life too.

Dedicated77

Hey all,
Here’s an update on our situation. As of 19th April 20, 2015, it’s been one year since our last radiation treatment. All is looking good. She has a mild case of lipodemia. Hope I spelt that right. Her arm goes numb and I continue arm massages nightly. But we are doing well. She has her ups and downs, which are understandable. Most of her anxiety comes from going to her checkups. And she is very self-conscious after her mastectomy. Her prosthetic bra is heavy and unconfutable. So, for our one yr anniversary we went out to eat. Our daughter cut her hair on the 19th to donate to locks of love. What a sweet girl. I would like to say thank you for all of you guy’s support and stories.

Niloc

Glad everything is going well for your wife and you. It can be a long road and the check up anxiety is normal. My wife goes through understandable tension before each check up.

Sorry about the LE, as that is an ongoing hassle and discomfort. Tell her to try a weighted FOAM form in a sports bra or cami, she may find that much more comfortable for everyday use - my wife loves them. Not expensive and often pop up on ebay too - worth a try.

supportivehubby

My wife opted for a bilateral masectomy with reconstuctive surgery. Bit of background, two of her three sisters have/had breast cancer, one terminal, the other had ductal cancer. The third sister, she simply does not want to know, avoids mammograms all together. My wife opted for the surgery simply out of the anxiety of 3D mammograms/MRI's and continual biopsies. All biopsies prior to the surgery were negative. No Bracca gene. The surgery was Tuesday, all went well thus far......

Today we received a call from her doctor and was informed that the pathology report from the masectomy showed two small pea sized tumors, right in the same area of where they took the most recent biopsy just a couple months ago. All I took from the call was 1A, non aggressive, no chemo, possibly a lymph node biopsy. My wife heard "no pills" prior to me joining the call. Prior to all of this, I've done my best to get somewhat versed on breast cancer without delving too deep. My wife was a bit naive thinking that preventative care was like a guarantee of never getting an advanced stage breast cancer. I explained as did her doctor, that that was simply not true. My wife and I are lunar opposites, I like to investigate everything, understand treatment options pros and cons, alternative health, finding the best doctor etc etc. She will likely simply follow the advice of whatever her doctor tells her this coming Wednesday. She likes and trusts her doctor. I like her as well, but "liking" doesn't simply work for me. Is she the best, will her suggestions be the best approach out there??

So I am looking for some guidance, should I quietly investigate once I get more data? Or should I jump off this board? I already grasp there is more to the 1A, the doctor was spewing out info awfully fast in regards to negative positive etc. etc. I don't want to inundate my wife or frighten her, I'd like to help her make the best choices. I also don't want to become the fearful one from reading too much internet info . I am usually the well thought out one in our relationship, she is quick to decide with blinders on at times. I'd rather not live our upcoming years of life in fear and I see that can easily happen with the C word in the mix now...

Any suggestions for me or should I simply take my wife's lead on this as it's her life, her body, her choice? Piece of mind for her is obviously the most important thing right now and moving forward.

Bit confused and frightened myself.....

BarredOwl

Hi supportivehubby:

While some patients don't really ask many questions themselves, it is often because they are not sure what to ask or because they are stressed and may be unable to focus or think clearly. Some are hesitant to question an expert. However, today, doctors are used to fielding questions from engaged and informed patients.

Most patients really appreciate having someone "ride shotgun" at appointments to help absorb the information and advice, take good notes, think of good questions and help to process information and advice. Accompany your wife to her appointments. Let her ask her questions, if any. Then, you can ask yours after: "Just to be sure we understand, [insert question]".

If she is freaked out by information on-line or you are an internet ace, you can lead the effort to obtain relevant and reliable information and share it with her. I have done that for my mother.

It sounds like you both were a little shocked and not able to absorb much from the telephone conversation. But once there is a diagnosis of cancer, in order to make informed decisions, you and your wife need to understand the pathology and diagnosis, and how it relates to the available treatment options and the advice you are receiving as to whether they are recommended or not. ("Trust, but verify.")

Pathology Report:

If you have not already done so, your wife should request a copy of the pathology report, so you (both) can see exactly what the findings are, and know what you are dealing with. Your wife is entitled to a copy (in hard copy or on-line, if available). The pathology report will also help you better understand what the doctors are telling you and help you to frame questions, which may help you with decisions (including no treatment).

In the pathology report, look for these kinds of things (they may sound familiar to you from the telephone call):

What are the sizes of each of the tumors? (e.g., 6 mm, 8 mm, whatever)

For each tumor found, what kind of tumor is it? (e.g., invasive ductal carcinoma, other?)

For each tumor found, has a "grade" been assigned (Grade 1, 2, 3)"?

Invasive cancers are typically tested to determine hormone receptor status (estrogen receptor "ER", progesterone receptor "PR"), and HER2 status. What are the ER, PR and HER2 statuses of each tumor?

If some or all of this information is not available, could it still be obtained from the tissue samples? If not, why not?

What are the sizes of the margins with respect to each tumor? (the distance from the malignant cells to the edge of the surgical sample.) You will want to ask the surgeon if the margins are "adequate", and what is the minimum size that they consider to be "adequate".

Is there any information about lymph nodes (e.g., sentinel nodes)?

Does the word "pending" appear anywhere in the report, or is there reference to a "supplemental" report or "addendum" to be issued at a later date? If so, be sure to follow up and get the additional test results/reports.

Excellent Pamphlet regarding Pathology Reports:

Here is some more information about the contents of pathology reports. Download and print the very helpful pamphlet at the bottom of the page. Note the Glossary and Checklist at the end of the pamphlet.

http://www.breastcancer.org/symptoms/diagnosis/get...

Radiation and Adjuvant Therapies (post-surgical drug treatments):

Sometimes, radiation is given after mastectomy. Often it is not. I believe that the size of the surgical "margins" and node involvement are factors that play into this decision.

The surgeon may think further treatment is not needed ("no chemo"), and that is very encouraging. However, the surgeon is not the appropriate expert regarding endocrine (anti-hormonal) therapy, chemotherapy or other possible interventions.

With a diagnosis of invasive disease (IA or t1a), there should be meeting with a medical oncologist at some point for expert advice regarding anti-hormonal therapy (e.g., tamoxifen or an aromatase inhibitor, or other intervention), chemotherapy, and/or targeted therapy (e.g., trastuzumab (Herceptin) for HER2+ disease, if applicable). Whether or not any of these are indicated will depend on a variety of factors, like stage, including whether there is any lymph node involvement (e.g., determined by sentinel node biopsy), ER/PR status, HER2 status, medical history, etc. There will be a personal assessment of risk and benefit.

A medical oncologist may recommend further testing to aid or support decision-making (e.g., the "Oncotype DX" test).

You can request a referral to a medical oncologist.

Lymph Node Biopsy:

You mentioned a possible lymph node biopsy. Did your wife have a Sentinel Node biopsy performed during the mastectomy? If no axillary (underarm) lymph node assessment has been done yet, a further discussion with the breast surgeon is needed to discuss what procedure is possible now, what are the possible complications of the proposed procedure, and what information may or may not be gained thereby. Do you have a follow-up appointment scheduled in the next week or so with the surgeon?

Stage and Size:

I note the comment about "1A" or maybe just tumor size "1a". You note there are two small "pea-sized tumors". That sounds like they are each less than 1 centimeter.

The TNM staging system is actually based on three kinds of information: (1) "T" tumor size; (2) "N" node status; and (3) "M" whether there is distant spread. It seems you do not have information about "N" nodal status yet?

Considering size only, here is some information about "T1" size tumors:

T1 Tumor ≤ 20 mm in greatest dimension, can include any one of:

T1mi Tumor ≤ 1 mm in greatest dimension (micro-invasive)

T1a Tumor > 1 mm but ≤ 5 mm in greatest dimension

T1b Tumor > 5 mm but ≤ 10 mm in greatest dimension

T1c Tumor > 10 mm but ≤ 20 mm in greatest dimension

That is a lot of information for you!! But you will learn quickly, and being familiar with the pathology report and terminology will make it much easier for you to understand the advice you received and will be receiving and the basis for it.

Do not hesitate to ask us more questions or the doctors.

Good luck!

BarredOwl

---

Age 52 at diagnosis - Bilateral breast cancer - Stage IA IDC - BRCA negative;

Bilateral mastectomy and SNB without reconstruction 9/2013

Dx Right: ER+PR+ DCIS (5+ cm) with IDC (1.5 mm) and micro-invasion < 1 mm; Grade 2 (IDC); 0/4 nodes.

Dx Left: ER+PR+ DCIS (5+ cm); Grade 2 (majority) and grade 3; isolated tumor cells in 1/1 nodes (pN0i+(sn)).

Moderators

Hi All,

We would really like to put together a slide show showing all your faces to show the amazing diversity of our community, reaching around the world. Please share with us here https://community.breastcancer.org/forum/135/topic..., or PM us. We may also present this at our annual fundraiser in October.

Photo (best quality possible)

Where you live

Diagnosis OR IF YOU ARE A CAREGIVER

Your Age

Quote about how the community/BCO has helped you.

Thanks Everybody!

supportivehubby

Thanks for the info Barred Owl....

I printed the booklet, it will be very helpful for our visit with the surgeon on Wednesday. Our surgeon mentioned that they will be disguising my wife's case, among others, with a large staff prior to our visit

To answer a few questions, they did not take any lymph node samples during the mastectomy as the mastectomy was simply a preventative decision. I did hear ER positive etc or negative, tumor sizes of 4-5 mm right near one another in the left breast, so I believe all the information is available to answer all my questions.

The thing that confuses me though from the pamphlet you linked, I specifically heard the surgeon state it was 1A. How are they able to classify it without a lymph node sample? Is it something in the pathology report that indicates this for them? I

BarredOwl

Hi supportivehubby:

Glad to hear you are ready for the appointment on Wednesday. It sounds like there is some sort of "tumor board" or analogous group of multidisciplinary experts which reviews cases, which is good.

At least under the TNM staging system, I believe that a complete determination of stage seems to require a node (N) assessment. But I guess they could approximate the lowest possible stage by assuming no node involvement.

It is possible that they said something like, if she were node negative, then she would be Stage IA. They may also have just been referring to the size of the tumors as "1a" or T1a. Regarding the "T" component of staging, the two 4-5 mm tumors would each be T1a:

T1a Tumor > 1 mm but ≤ 5 mm in greatest dimension

This is a good explanation of TNM breast cancer staging from the AJCC, with a chart:

https://cancerstaging.org/references-tools/quickre...

See the T1 info on page 1 (top center).

The various N statuses are explained on page 2 (right column).

Then, see the little grid/chart in the bottom half (center) of page 1.

If a T1 tumor, such as a T1a tumor, is node negative (N0), and M0, it would be "T1, N0, M0" which is listed in the chart as Stage IA. But if there is some degree of node involvement, the stage would be higher according to the chart.

The doctor will probably review everything with you again, and you can ask if the approximate stage information could be different if there was lymph node involvement.

You may want to make a list of questions to take with you. There are some sample questions throughout my last message, and you will probably think of more!

Best wishes to your wife for a speedy recovery from surgery!

BarredOwl

Homehelp

HI All

I am a husband and caregiver and a physician

you guys rock !!

my wife had a bilateral mastectomy 1 1/2 years ago and had tumor markers increasing and a solitary liver lesion

she started a clinical trial with a Abraxane and a possible PDL 1 inhibitor and seems to be tolerating it well

It's a long journey .. stay strong and speedy recovery to all

The1toC

Home help

Yes it's a long journey but every step is worth i, so many learning points along the way and, weirdly, opportunities for personal growth whether one wants it or not!

I wish your wife comfort and treatment success and most of all long healthy life.

physician to physician I will encourage you to consider that the medical works is limited to what it knows and does well. Treatment protocols do not include or consider the influence of attitude, support, participation in programs like Livestrong etc. They are all important and generally no way to measure via RTC to be included in the literature, bill and code for even in ICD10,etc.

Glad your wife has such support and that you believe in her and her success-do what you can to make sure she does too. Take good care of yourself so that you can take good care of her too.

Homehelp

thank you The 1 to C

These new immune receptor inhibitors can potentially be a game changer ,especially for triple negative

Genetic maping of tumors , and determining specific proteins and targets may soon be reality

I would encourage people to look into the new trials if they qualify

Thanks to all for the support !

PatrickG

Hi guys,

I am glad I found this page, been coming to the boards for a little while now but only the page for husbands of stage IV. This page seems to have a lot more movement. It's a double edge sword I am happy to have more men to talk to but sad that there are so many.

My wife and I got the news in early September that she was stage IV has bilateral IDC ILC. The number of tumors exceeds 15 between both breasts, andhas metastasized to her bones. Most of our lives have settled down some now that we are on our way to the three month mark.

I find it very hard to handle my emotions at times. For the most part all is good but it can still be difficult. I have become much more versed in what this DX means. We are lucky I guess that for the time being she only has tamoxifen and zometa for her bones. No surgery yet we have to wait to see if the initial treatment is working for them to go ahead with that.

I know all to well the anger that can come with your wife having to go through all of this. We have to sit there and watch as our wives fight. We are their support the one that takes care of them and keeps them comfortable and above all love them but we can't fight for them,and that I think is the hardest part.

If I can answere any questions or can offer any help I will but I will also be here to get the support that only we the husbands can give each other. Hope to hear from you all often.

PatrickG

Homehelp

Thanks guys

I am not at all against the nontraditional treatments such as acupuncture or meditation etc

at this point we are limited because of the clinical trial

attitude helps , but at times as Patrick says , lots of emotions to deal with , especially when we seem to be watching this happen to our loved ones in slow motion !

we just hope that the tumor continues to respond and that there continues to be more drugs that can be used effectively

Also they are working on a vaccine , which might also be helpful .

Dedicated77

Hey gents,

Well we are hitting our 2 yr mark from the ending of the radiation treatment. I just wanted to give an up date. We are doing great. We do check ups every 3 months and no sign of recurrence. Thank you all for participating in this blog and all the support you have given me and my wonderful wife. It has helped out a great deal in going through this process. You all are in my prayers. My door is always open if you need to talk or just want to BS.

Sincerely,

Ske

mike3121

Six months from her latest PET scan, which was clean. Waiting for results from latest PET scan. Why won't that darn doctor call us? They say 6 months, 2 years then 5 years are, generally, critical periods.

My wife's BC history. My wife refuses to use the internet, well except for Amazon and Ebay.

My wife, back in Dec of 2012 was diagnosed with Stage 4 ER+ PR+ HER2-breast cancer. One node and a small spot on the spine. After 3 infusions of AC she was clean except for the 6 cm tumor in her breast. The oncologist said since the cancer was responding well to estrogen blocker (aromasin) it was best to leave it be. Ops forgot to mention in the midst of all this cancer stuff she had to have removed a grapefruit sized and very painful non-cancerous ovarian cyst.

A little over a year later, Nov 2014, the cancer morphed and went crazy. She had a radical mastectomy and breast removal. A biopsy showed it to be ER+ and the oncologist prescribed tamoxifen. 19 lymph nodes were removed and 9 of the 19 had triple negative Metaplastic keratinized squamous carcinoma. A PET scan done after the surgery showed some cancer still in her armpit, probably spill over from the nodes. She has two cancers, one ER+ PR+ HER2- and another triple negative. She went back on A-C (lifetime amount), no Taxol as she almost died from it earlier. Almost died from NeuLasta too. Also 7 weeks of radiation.

After all that she had have major surgery to remove a tumor from her kidney. Eighty five percent were cancerous but hers was benign. Happy dance, she's NED and back on tamoxifen.

Prayers and fingers crossed.

Doc finally called. Good news. "No active cancer found." However he found some "undefined issues," whatever that is. He'll talk to my wife about that next week. What the heck is an "undefined issue?"

ragman

Fairly new here, i've posted in other threads, and was looking for a husbands thread, and found this.

Wife diagnosed 29 years ago, stage 1, small tumor less than half cm, lymph nodes negative. Lumpectomy, rad, no further treatment. 3 years later, new tumore same side, mastectomy. No further treatment. Small, again, no lymph nodes involved. Saw MO every three months, then every 6, then once a year at year 5. All good. 8 years ago, one of her markers peeked above the normal range (CA 15-3) at 33.So back to every 3 months. It bounced around between 32 and 40 back and forth. After 2 years, she went to 6 month visits, with Dr concluding that its just her new normal, since it was going up and down between 32 and 40, and it was just something to keep an eye on. 6 months ago it was 40, at the high end of her range. week, it was 49. Dr still feels that its nothing , she just runs high. I questioned him on it, he said, normal physical exam, she has been running above normal for 8 years, no symptoms and her other markers (CEA and CA 125) are "perfect"/normal. So he is not too concerned. Said if we want we can come back in 3 months but he thinks 6 is sufficient. And also added, to do scans now would be a wild goose chase, that he doesnt want to send us on.

Needless to say, i am nervous. She is too, but she is completely not pro active. She puts her head in the sand. If i didnt make the appointments for her, she would never see a Dr.

For the husbands - how involved do you get? What do you do with a woman who is so scared of a Dr appointment that she cannot function. I dont want to, as someone in another thread said, be her parent. I want her to take control of her health, but she seems just incapable. Its amazing, after 26 years of no recurrence. I love her more than life itself, and i want to protect her. And yet i want to be her supportive husband, not her parent and caretaker, as long as she is physically able to take care of herself. But she seems mentally incapable.

Any thoughts, on both the marker issue AND the mental issue, appreciated.

Dedicated77

Ragman,

I'm very involved with my wife's treatments. I can only talk to what I have noticed in my wife and my self. I'm a US Navy Sailor and have had some training on PTSD. We just hit our 2 yr mark from radiation. I have noticed that when she is feeling sick or hurt in some way she refuses to make a doctors appointment for it. And me on the other hand I urge her to make one.

Here is what goes through my mind over this. Why is she hurting? What's causing it? Is the cancer coming back? She on the other hand, dreads going to her appointments. She fears that it has come back. Almost seems like she would rather not know and it will just go away.

So I think we, as a couple, suffer from a degree of PTSD. I still haven't got my wife to see a counselor for it. And I have a great support group with my command that helps me keep a level head. My wife is a mild to moderate mental handicap teacher and feels weird going to counseling over this. But I keep trying to get her to go and I support her 100%. It defiantly can be an upward climb some time, and very trying.

My suggestion for the mental side is seek help. Talk to someone about this. Believe it or not they do have councilors that specialize in Cancer/PTSD. Its worth looking into. Well I hoped this helps in some way. Just hang in there. and you or anyone can contact me.

Homehelp

going through this experience as a physician is eye opening

While I know most but not all of the questions to ask ,this area is not my specialty and I don't have the control I am used to

Having said that , there are many emotional and psychological issues that must be dealt with when it comes to further testing and evaluations

My wife's tumor marker was borderline at around 35 for 18 months and we asked about more testing but were told it's not indicated

Only when she insisted the fatigued was worse did we insist on scans but when a doctor says its not needed or doesn't push for it usually because we want good news

But patients symptoms matter and I learned to push for what we think we need even if we must fight the insurance company

When our wife's don't want to go for studies or treatment counseling is good and real heart to heart discussions are needed

PTSD is unfortunately a good way to relate to what we all are going through so counseling is worthwhile if needed

But all of us are scarred and nervous to get results

I explain to my kids that as life evolves results carry totally different meanings

When we were young we worried what we got on an exam or on our boards

Now results are about scans and lab work

That's our new reality

Good luck to all and keep in touch

ragman

Thanks guys. PTSD is a good way to put it, I guess. Before my wife's diagnosis, when she was in her early to mid 30s, (she was diagnosed at 36) she was diligent about her Dr appointments. After she was blindsided with a diagnosis, then 3 years later with a new BC, everything changed, and since then it's all me making appointments. So I guess PTSD is an apt description.

@Homehelp, if my wife had symptoms, I would insist on scans, but she doesn't, so I still hope the Dr is correct and it's just her new normal, after 8 years of 1 rising marker. Although f she had symptoms, I probably wouldn't have to push. I only hope that if she does have symptoms, now or in the future, she doesn't keep it from me (and her Dr.)

I imagine by the way, that going through this as a Dr, it must be tougher, with your higher level,of knowledge

@Dedicated77, first, thank you for your service to our nation.

Your situation with your wife sounds uncannily like a mirror image of mine. The only difference being that u are 2 years in, and I am 29 years in. Your are right, we both have PTSD of sorts. I too am extremely scared at all of her appointments. My own appointments as well,since I was diagnosed with Prostate Cancer 18 months ago. But I react differently and make my appointments when I need to, and plow through it.

Related to this anxiety, I am seeing a psych for biofeedback, which is helping me. I truly wish I could get her to go for counseling. She would never do it. Hopefully, all stays under control, and we go on with life

Thanks for your replies, they are much appreciated